I am not angry. Just thought some of you may have been wondering what the heck we've been doing since we warned about the approaching storm in the last post.
We made it through Hurricane Sandy unscathed. We lost power for about 24 hours but were able to keep Zachary's emergency backup batteries charged by plugging them into the charger in the van, though that required quite a bit of driving around. It got cold in the house (59 degrees) but the power came back on shortly before we were ready to abandon ship.
A lot has happened since then.
Probably the biggest news is that Zachary had what we think was a successful sleep study. We don't have the official results back yet but he went all night without oxygen or needing to be put on the vent, so those are really good signs. His carbon dioxide got a little high but not so much so that he needed to be vented. This means we may soon be able to start weaning him from the vent when he's sleeping, which is another prerequisite to getting rid of the trach.
We've also started weaning him from his bottles of formula, which means starving him until he's so hungry he'll eat stuff like yogurt and baby food and rice cereal. We've made some progress, though not as much or as fast as we'd like. And he's lost some weight, dropping below 20 pounds again. But we're seeing a dietitian at Georgetown University Hospital who seems supportive of our desire to get him eating real food. It's real tough on the days he's cranky, crying, and signing for his bottle, but we've held firm so far.
He's had a bunch of other doctor's appointments too in last month. He's seen the pediatrician multiple times, the pulmonologist, the cardiologist, and the dietitian, not to mention his physical therapist and speech and occupational therapists. All have gone reasonably well. Still getting better, just more slowly than we'd like. But he's headed in the right direction.
And we've entered the dreaded RSV season, the time of year when kids get this respiratory infection that really puts those with chronic lung disease like Zachary into a tailspin. The doctors have told us to put him on lockdown and avoid other children or enclosed places where it could be transmitted.
We're haggling with the insurance company, Medicaid, and the pediatrician's office to get him a synthetic vaccine called Synagis that's supposed to help, but the health care and insurance bureaucracies are beating our butts right now. He's technically outside the guidelines for getting this very costly series of shots (one per month from October to March) but all the doctors seem to think he needs it. We're going to prevail eventually, though hopefully before he gets RSV.
Mom and dad are TIRED. The nursing hasn't gotten any better. But I think we've gotten better at dealing with the disappointment of unmet expectations. We could use a break though. We each stay up two nights a week to cover unfilled shifts. I am surprised at how efficient one can become on an hour or two of sleep per night, though it is no way to live, and as one of my friends says, is unsustainable. That's for sure. But it's better than the alternative, sadly.
Hope to start posting more regularly again. Thanks for checking in on us!
Monday, November 19, 2012
Sunday, October 28, 2012
calm before the storm
So I'm sure you've heard, there's a storm a coming.
All the smarty weather people say it is going to be bad. Word is that the worst will be from about 8:00 a.m. Monday to 8:00 p.m. Tuesday, when we're supposed to get really heavy wind (up to 80 miles an hour) and rain (5 to 10 inches), which if accurate, will almost certainly mean we'll lose power.
Washington has officially shut down. No government. No transportation. No schools. Those of us who live here are used to the over-hyped prognostications about winter storms that never seem to be as serious as they are made out to be. Hope that's the case this time.
The power company called a couple days ago to tell us to expect to lose power for multiple days. Guess that's what passes for customer service these days.
The medical supply called to see if we needed anything, and when we said we needed some oxygen, said they'd put in an order, which means we'll get it who knows when.
And the hospital called to see if we had any alternate plans other than shelter-in-place, which, not to their surprise, will be to go to the hospital if we lose power for too long so we can keep the ventilator operational. We're hoping though that we can sufficiently charge the equipment in the van and avoid any hospital visits.
We've prepared about as much as we can. All the back-up power for Zachary's medical equipment is charged. We've got lots of canned food and water to ride out the storm and its aftermath. Fresh batteries for flashlights abound. All the cars are filled with gas.
So we're just sitting and waiting. Just a cold light rain right now. Soon to change though.
All the smarty weather people say it is going to be bad. Word is that the worst will be from about 8:00 a.m. Monday to 8:00 p.m. Tuesday, when we're supposed to get really heavy wind (up to 80 miles an hour) and rain (5 to 10 inches), which if accurate, will almost certainly mean we'll lose power.
Washington has officially shut down. No government. No transportation. No schools. Those of us who live here are used to the over-hyped prognostications about winter storms that never seem to be as serious as they are made out to be. Hope that's the case this time.
The power company called a couple days ago to tell us to expect to lose power for multiple days. Guess that's what passes for customer service these days.
The medical supply called to see if we needed anything, and when we said we needed some oxygen, said they'd put in an order, which means we'll get it who knows when.
And the hospital called to see if we had any alternate plans other than shelter-in-place, which, not to their surprise, will be to go to the hospital if we lose power for too long so we can keep the ventilator operational. We're hoping though that we can sufficiently charge the equipment in the van and avoid any hospital visits.
We've prepared about as much as we can. All the back-up power for Zachary's medical equipment is charged. We've got lots of canned food and water to ride out the storm and its aftermath. Fresh batteries for flashlights abound. All the cars are filled with gas.
So we're just sitting and waiting. Just a cold light rain right now. Soon to change though.
Monday, October 22, 2012
wedding weekend
We went to Richmond this past weekend to watch one of Erin's cousins get married. Zachary went with us too, though he skipped the wedding itself, which was lots of fun.
He had a weekend full of firsts, such as his first time staying in a hotel, which he thought was wonderful since it had so many doors he could open and close, and open and close, and open and close. He also was quite fascinated by the elevators, in which he could see his reflection.
He also got to meet some extended family for the first time, which gave him an opportunity to show everyone how well he waves hello and goodbye. He also visited Virginia's capitol and had his first full-blown public meltdown in the hotel lobby. He also got to see grandma, Uncle Matt and Aunt Jill and cousins Jake and Grace, who visited him in his room while we were at the wedding and reception. (We brought a nurse with us too).
It wasn't all fun and games, though. He got sick on his second night there despite our best efforts, probably because of the germy floors and air. Not sure just yet whether it's just a little cold or something more serious, like a respiratory infection. Time will tell. Right now he has a runny nose, dry cough, diminished appetite, low energy and is needing way more oxygen that he usually requires.
So sad to see him feel so crummy. His coughing fits have gotten so bad and he cries so much that tears run down his little cheeks. We're giving him more frequent and varied nebulized breathing medicines so hopefully that will start helping soon.
But the good news is that at least his feeding tube gives us the ability to give him food and fluids even though he's not hungry, so he can stay hydrated and nourished. He needs to get better quick so we don't have to cancel the sleep study he has on Halloween.
The sleep study, which requires a night in the hospital, will help determine whether he's retaining carbon dioxide when he sleeps, which is why he's still on the vent at night. If he's not, then we can start weaning the vent at night over the course of a couple months, which is a necessary step before we can start the process of decannulation, or getting the trach out.
If the sleep test goes badly, he'll need to stay on the vent at night through the end of the year and into next year while his lungs continue to heal from the battering they took when he was first born and they were paper thin and were brutalized by the force required to properly ventilate him. Wouldn't be the end of the world, but would be a disappointment for sure since the trach would have to be in longer than we would have hoped.
We have had some positive news on other medical fronts recently. He reached 20 pounds today so he's finally on the growth chart and trending up. And his pulmonary hypertension hasn't gotten any worse, so we've decided to go back to seeing his first cardiologist who we really liked before it was recommended that we see a PH specialist.
So all-in-all it was a good weekend. Could have done without the sickness, but he had some new experiences and got to meet some people who care about him very much, which made it worth it, as did seeing Erin's cousin Marc and his family so happy at their wonderful wedding weekend.
He had a weekend full of firsts, such as his first time staying in a hotel, which he thought was wonderful since it had so many doors he could open and close, and open and close, and open and close. He also was quite fascinated by the elevators, in which he could see his reflection.
He also got to meet some extended family for the first time, which gave him an opportunity to show everyone how well he waves hello and goodbye. He also visited Virginia's capitol and had his first full-blown public meltdown in the hotel lobby. He also got to see grandma, Uncle Matt and Aunt Jill and cousins Jake and Grace, who visited him in his room while we were at the wedding and reception. (We brought a nurse with us too).
It wasn't all fun and games, though. He got sick on his second night there despite our best efforts, probably because of the germy floors and air. Not sure just yet whether it's just a little cold or something more serious, like a respiratory infection. Time will tell. Right now he has a runny nose, dry cough, diminished appetite, low energy and is needing way more oxygen that he usually requires.
So sad to see him feel so crummy. His coughing fits have gotten so bad and he cries so much that tears run down his little cheeks. We're giving him more frequent and varied nebulized breathing medicines so hopefully that will start helping soon.
But the good news is that at least his feeding tube gives us the ability to give him food and fluids even though he's not hungry, so he can stay hydrated and nourished. He needs to get better quick so we don't have to cancel the sleep study he has on Halloween.
The sleep study, which requires a night in the hospital, will help determine whether he's retaining carbon dioxide when he sleeps, which is why he's still on the vent at night. If he's not, then we can start weaning the vent at night over the course of a couple months, which is a necessary step before we can start the process of decannulation, or getting the trach out.
If the sleep test goes badly, he'll need to stay on the vent at night through the end of the year and into next year while his lungs continue to heal from the battering they took when he was first born and they were paper thin and were brutalized by the force required to properly ventilate him. Wouldn't be the end of the world, but would be a disappointment for sure since the trach would have to be in longer than we would have hoped.
We have had some positive news on other medical fronts recently. He reached 20 pounds today so he's finally on the growth chart and trending up. And his pulmonary hypertension hasn't gotten any worse, so we've decided to go back to seeing his first cardiologist who we really liked before it was recommended that we see a PH specialist.
So all-in-all it was a good weekend. Could have done without the sickness, but he had some new experiences and got to meet some people who care about him very much, which made it worth it, as did seeing Erin's cousin Marc and his family so happy at their wonderful wedding weekend.
Sunday, October 14, 2012
turning two
My baby boy turns two tomorrow!
We celebrated yesterday with a small party at our house joined by some family and a few close friends. Aunt Judy made this amazing cake, which tasted as good as it looked.
I can't believe it has been two years since Zachary's remarkable birth. They have been years filled with ups and downs and hopes and fears. But most of all the days between then and now have been filled with love for this unbearably adorable little boy and amazement at how much he seems like any other toddler entering his terrible twos.
I think one of the things that struck me most about his birthday celebration was how little I thought about the special circumstances that surrounded his birth and the challenges of the resulting rehabilitation, but instead was focused more on matters such as making sure there was enough food and drink and the score of the Redskins game.
I wasn't thinking about lung disease, mucous plugs, feeding therapies, or any of the other unresolved medical and developmental issues, of which there certainly are many. But yesterday I felt like I was able to put those very important issues into perspective, at least more so than I have in the past. One of my greatest worries is that I have become so invested in being the parent of a preemie that I'm missing out on just being a parent.
So my pledge to my son for his third year is to be a little less protective so he can do what little boys do while I work on being a little more father and a little less caregiver.
Happy birthday, buddy.
Sunday, October 7, 2012
happy anniversary
Today is my sixth wedding anniversary. Hard to believe it has been six years since we stood in the shadows of the Jefferson Memorial before friends and family and promised all those things.
We're not really the same people we were back then. We're older, hopefully wiser, and definitely more weary given the challenges of the past two years. We used to be those people who had cool and exciting experiences like exploring Ecuador, visiting London, enjoying Rome, and cruising the Italian Coast. We used to camp, kayak, run, and in retrospect, waste a lot of time too. Not so much anymore.
Some of the lifestyle changes are simply from having a child, sick or otherwise. But some are unique to caring for Zachary, which we've done as best we can. We've been forced to band together to make life-altering decisions, both for him and us, and modify our lives as needed, like becoming a one-income family so one of us can be here to care for him the way he should be cared for all the time.
The challenges have brought us closer at some times, and driven us apart at others. Sometimes it's not so hard. Sometimes it's really difficult. But we have been really lucky to have such great friends and wonderful family to help us through the rough spots.
I have no idea whether these continued tests will eventually break us or bond us more tightly. But I am certain that Zachary is lucky to have the best mommy a little boy could ever hope for, and I couldn't think of a more dedicated and committed partner fighting with me for his future.
Happy Anniversary, Erin.
We're not really the same people we were back then. We're older, hopefully wiser, and definitely more weary given the challenges of the past two years. We used to be those people who had cool and exciting experiences like exploring Ecuador, visiting London, enjoying Rome, and cruising the Italian Coast. We used to camp, kayak, run, and in retrospect, waste a lot of time too. Not so much anymore.
Some of the lifestyle changes are simply from having a child, sick or otherwise. But some are unique to caring for Zachary, which we've done as best we can. We've been forced to band together to make life-altering decisions, both for him and us, and modify our lives as needed, like becoming a one-income family so one of us can be here to care for him the way he should be cared for all the time.
The challenges have brought us closer at some times, and driven us apart at others. Sometimes it's not so hard. Sometimes it's really difficult. But we have been really lucky to have such great friends and wonderful family to help us through the rough spots.
I have no idea whether these continued tests will eventually break us or bond us more tightly. But I am certain that Zachary is lucky to have the best mommy a little boy could ever hope for, and I couldn't think of a more dedicated and committed partner fighting with me for his future.
Happy Anniversary, Erin.
Thursday, October 4, 2012
TODAY show story about the Zaky
http://video.today.msnbc.msn.com/today/49286455#49286455
The TODAY show ran a story this morning on the creator of the Zaky, which is used to comfort preemies in the NICU when their parents can't be there. We were fortunate that Aunt Judy found out about this and got one for Zachary while he was in the hospital. We still use it today!
The TODAY show ran a story this morning on the creator of the Zaky, which is used to comfort preemies in the NICU when their parents can't be there. We were fortunate that Aunt Judy found out about this and got one for Zachary while he was in the hospital. We still use it today!
Monday, October 1, 2012
BIG decision
We've made a big decision, or at least an important one that's going to have a major impact on life around here in the not too distant future. That decision is to forgo nursing starting at the beginning of next year.
In some ways it won't be too different than now, where we have week after week with multiple days and nights without nurses because there aren't any available who have experience working with kids with trachs who use ventilators. But in others it will be a significant change, especially when we really need a respite from the physical and mental rigors of caring for a medically-fragile kiddo like Zachary.
Don't get me wrong; we have been really, really fortunate to have had the help and benefit of some very caring and well-intentioned nurses over the past 15 months since Zachary came home. Might be a stretch to say we couldn't have done it without them, as we've been continually surprised by our capacity for adapting to each new challenge and learning how to care for such a labor-intensive little boy. I wouldn't have thought I'd ever be able to change a ventilator circuit, replace a trach, or put a dislodged feeding back into place, but such tasks have become routine.
But we still haven't become fully accustomed to private duty nursing. I still find it a little uncomfortable, if not downright intrusive, to have virtual strangers in my house day and night, each of whom has their own idiosyncrasies, like the one who used to throw bags of trash down the stairs, marking up the wall. Or the one who wouldn't clean up. Or the one who took their socks off in the middle of the night. Or the one who almost always showed up late.
But there have been some very serious issues too. Like the ones we found sleeping. Or the ones who didn't know how to operate the medical equipment. Or the ones who gave the wrong medication. Or the ones who lied about doing treatments or taking safety precautions. Or the ones who didn't know what to do in case of emergency. Or the one who left someone else's pill on the floor of the playroom. Or the one who left Zachary unattended. You get the picture.
I think most of the nurses we have met are in the business for the right reasons. Those that weren't were pretty easy to spot. But good intentions just aren't good enough. And all that caring and all those good intentions haven't always translated into competent care. And it pisses me off, because I've entrusted these people with my son's life. I don't think our experience is all that unique, unfortunately. Other parents have shared similar stories. I wish I knew why this seems to be an industry-wide problem and how to fix it. That's another post for another day.
For now, we're planning and preparing to adjust to a nurseless world next year. We figure it will take a couple months to get the house in order and establish routines for doing everything ourselves. But we have so many open shifts now as it is, especially at night, that we're getting a lot of on-the-job training. And we would be happy to train-up any friends and family who'd like to help out every now and then. Just ask.
This may seem like a dumb decision to make, and who knows, maybe we'll come to regret it. But it will be a big step toward normalizing life around here and further healing from the wounds inflicted by our tiny tot's early birth.
In some ways it won't be too different than now, where we have week after week with multiple days and nights without nurses because there aren't any available who have experience working with kids with trachs who use ventilators. But in others it will be a significant change, especially when we really need a respite from the physical and mental rigors of caring for a medically-fragile kiddo like Zachary.
Don't get me wrong; we have been really, really fortunate to have had the help and benefit of some very caring and well-intentioned nurses over the past 15 months since Zachary came home. Might be a stretch to say we couldn't have done it without them, as we've been continually surprised by our capacity for adapting to each new challenge and learning how to care for such a labor-intensive little boy. I wouldn't have thought I'd ever be able to change a ventilator circuit, replace a trach, or put a dislodged feeding back into place, but such tasks have become routine.
But we still haven't become fully accustomed to private duty nursing. I still find it a little uncomfortable, if not downright intrusive, to have virtual strangers in my house day and night, each of whom has their own idiosyncrasies, like the one who used to throw bags of trash down the stairs, marking up the wall. Or the one who wouldn't clean up. Or the one who took their socks off in the middle of the night. Or the one who almost always showed up late.
But there have been some very serious issues too. Like the ones we found sleeping. Or the ones who didn't know how to operate the medical equipment. Or the ones who gave the wrong medication. Or the ones who lied about doing treatments or taking safety precautions. Or the ones who didn't know what to do in case of emergency. Or the one who left someone else's pill on the floor of the playroom. Or the one who left Zachary unattended. You get the picture.
I think most of the nurses we have met are in the business for the right reasons. Those that weren't were pretty easy to spot. But good intentions just aren't good enough. And all that caring and all those good intentions haven't always translated into competent care. And it pisses me off, because I've entrusted these people with my son's life. I don't think our experience is all that unique, unfortunately. Other parents have shared similar stories. I wish I knew why this seems to be an industry-wide problem and how to fix it. That's another post for another day.
For now, we're planning and preparing to adjust to a nurseless world next year. We figure it will take a couple months to get the house in order and establish routines for doing everything ourselves. But we have so many open shifts now as it is, especially at night, that we're getting a lot of on-the-job training. And we would be happy to train-up any friends and family who'd like to help out every now and then. Just ask.
This may seem like a dumb decision to make, and who knows, maybe we'll come to regret it. But it will be a big step toward normalizing life around here and further healing from the wounds inflicted by our tiny tot's early birth.
Monday, September 24, 2012
pandas, penguins, and people
http://www.washingtonpost.com/local/newborn-giant-panda-cub-dies-at-national-zoo/2012/09/23/e58c19f8-019b-11e2-9367-4e1bafb958db_story.html?hpid=z1
You may have heard that the giant baby panda cub that was born at the National Zoo in Washington died Sunday, just a week after its birth. (I've included a link to the story from the Washington Post).
To my surprise, the news made me sad, really sad. It's not that I'm a huge panda fan, though I was disappointed we didn't get to see them during our visit last month. I think it made such an impression because it got me thinking about the universality of parenthood, the fragility of life, and the profound sorrow that any parent, human or animal, feels at the loss of a child.
I had no idea about how much I could love and how deeply attached I could become to someone I hardly even knew, even before he was born. Zachary's birth was so improbable anyway, with years of trying turning into IUI and then IVF, each costly cycle raising our hopes then dashing them days later until we finally got picture proof.
We suddenly joined this club that carries with it both unmatched joys and enormous responsibility. His early birth and multiplicity of problems prompted me into bargaining for his survival. Though my prayers would acknowledge that it was selfish to question God's plan for him, I would beg for that plan to include many years of health and happiness, with or without me. I realized from that initial prayer, which was my first in some time, that I would be willing to do anything for him.
I remembered the scene from the movie March of the Penguins where the poppa penguins risked their lives braving icy winds to keep the just-layed eggs warm while the momma birds trekked many miles back to the fishing grounds to fatten up so they could nurse the baby birds when they hatched. The movie showed one father whose efforts failed and the way in which he expressed his sorrow, much like the mama panda, making distress calls and cradling a toy much as she had been cradling her newborn cub.
I guess the news just hit home because I know we are blessed that we still have our little guy. We thought on more than one occasion that we wouldn't have him for long, going so far as to have a nurse take one first -- and we thought last -- family picture of the three of us. I cry every time I look at that picture, sometimes even when I think about it, like now. But I can't bring myself to erase it, maybe because it reminds me how lucky we are and not to take a single second with him for granted.
I might just be feeling overly emotional because I'm tired, it's late, and I'm spending another lonely nurseless night watching my boy sleep and wondering what he'll be like when he grows up, praying that he's not taken from us too soon by accident or sickness, and wondering how any parent could ever bear that burden.
So I guess in at least one way pandas, penguins, and people aren't all that different.
Saturday, September 22, 2012
boys weekend
It's just the boys this weekend.
Mommy went on an out-of-town paddling trip yesterday, leaving us behind to get into all manner of trouble.
So far we've watched some TV, which Zachary doesn't normally get to do. He didn't so much watch as just grab the remote and change channels. I think he was enamored with the power it gave him. Hope that doesn't go to his head.
We also tried to stay up late last night, but the little guy tuckered out at 8:00 p.m., which is earlier than he normally goes to bed. He made up for it by getting up around 6:00 a.m. this morning though.
We've got a big day planned today. Going to go for a walk this afternoon, then after playing for a while, are going to watch Florida State and Clemson, if he can stay up that long. Then tomorrow we're going to watch the Redskins.
Erin and I have been trying to get away for a day or two here and there to mentally decompress, get a little exercise, and recharge our batteries. One of these days we may even get away together for a few days, or at least that's the hope.
So anyone have any ideas what me and the boy can do while mommy's gone?
Mommy went on an out-of-town paddling trip yesterday, leaving us behind to get into all manner of trouble.
So far we've watched some TV, which Zachary doesn't normally get to do. He didn't so much watch as just grab the remote and change channels. I think he was enamored with the power it gave him. Hope that doesn't go to his head.
We also tried to stay up late last night, but the little guy tuckered out at 8:00 p.m., which is earlier than he normally goes to bed. He made up for it by getting up around 6:00 a.m. this morning though.
We've got a big day planned today. Going to go for a walk this afternoon, then after playing for a while, are going to watch Florida State and Clemson, if he can stay up that long. Then tomorrow we're going to watch the Redskins.
Erin and I have been trying to get away for a day or two here and there to mentally decompress, get a little exercise, and recharge our batteries. One of these days we may even get away together for a few days, or at least that's the hope.
So anyone have any ideas what me and the boy can do while mommy's gone?
Saturday, September 15, 2012
what's been going on?
I've been off the grid for a while and neglected my posting duties, so here's what's been going on the past several weeks for those of you who are interested, which I guess is you since you are reading this right now.
Zachary visited his cousins Grace and Jake a couple weeks ago in Cleveland. He LOVED being around kids his size, well, almost his size. It was interesting to see him interact with them. He was fascinated by Jake, who's 3, and followed him around trying to pat him on the head. Jake was a good sport, but could have done without the irritation. Grace just wanted to hug and cuddle with Zachary, which was really cute.
I was worried about him getting knocked down and around, but on the few occasions he took a tumble, he popped up smiling and laughing. He did do a header onto the hardwood floor while running around the house, resulting in a nasty-looking knot and bruise on his forehead. I think it hurt me more than him. I'm looking forward to him spending more time with them and other kids his age and ability so he can start getting used to interacting and socializing with someone other than us and his doctors and nurses.
He also had an ultrasound last week to check on the artery and vein that were fixed a month or so ago. There was still some residual blood flowing where it shouldn't, but it wasn't too much and the doctor thinks things looked pretty good. Has to check again in about six months but it looks like we'll be able to avoid a second surgery, which is a relief.
But for whatever reason, his heart rate has been creeping up to pre-surgery levels, about 15 to 20 beats per minute higher than it was before he started having problems. He's not showing any signs of being sick, like increased secretions or a fever or anything like that, so we're miffed. His pediatrician doesn't seem too concerned, but can't explain it either. We've reached out to his cardiologist and pulmonologist to get their thoughts, so stay tuned.
Zachary is also very happy that football season has started. He things Florida State could have a great year (national championship?) and that RGIII and the Redskins are going to be very exciting to watch, though probably won't win the NFC East or make the playoffs. But what does he know, he's not even two years old, though he will be next month, believe it or not!
Zachary visited his cousins Grace and Jake a couple weeks ago in Cleveland. He LOVED being around kids his size, well, almost his size. It was interesting to see him interact with them. He was fascinated by Jake, who's 3, and followed him around trying to pat him on the head. Jake was a good sport, but could have done without the irritation. Grace just wanted to hug and cuddle with Zachary, which was really cute.
I was worried about him getting knocked down and around, but on the few occasions he took a tumble, he popped up smiling and laughing. He did do a header onto the hardwood floor while running around the house, resulting in a nasty-looking knot and bruise on his forehead. I think it hurt me more than him. I'm looking forward to him spending more time with them and other kids his age and ability so he can start getting used to interacting and socializing with someone other than us and his doctors and nurses.
He also had an ultrasound last week to check on the artery and vein that were fixed a month or so ago. There was still some residual blood flowing where it shouldn't, but it wasn't too much and the doctor thinks things looked pretty good. Has to check again in about six months but it looks like we'll be able to avoid a second surgery, which is a relief.
But for whatever reason, his heart rate has been creeping up to pre-surgery levels, about 15 to 20 beats per minute higher than it was before he started having problems. He's not showing any signs of being sick, like increased secretions or a fever or anything like that, so we're miffed. His pediatrician doesn't seem too concerned, but can't explain it either. We've reached out to his cardiologist and pulmonologist to get their thoughts, so stay tuned.
Zachary is also very happy that football season has started. He things Florida State could have a great year (national championship?) and that RGIII and the Redskins are going to be very exciting to watch, though probably won't win the NFC East or make the playoffs. But what does he know, he's not even two years old, though he will be next month, believe it or not!
Tuesday, August 28, 2012
Saturday, August 25, 2012
Welcome to Holland
http://www.youtube.com/watch?v=RqGQjoTn2xY&feature=shareis
I came across this poem many months ago. It reminded me not to focus so much on what we've missed out on given the special circumstances of Zachary's birth and ongoing recovery, but instead to appreciate the things we otherwise may have never known or appreciated. Worth the watch.
I came across this poem many months ago. It reminded me not to focus so much on what we've missed out on given the special circumstances of Zachary's birth and ongoing recovery, but instead to appreciate the things we otherwise may have never known or appreciated. Worth the watch.
Saturday, August 18, 2012
whew . . .
We're back (both from the hospital and to the blog). We've actually been home from the hospital for a few days now but I've been too busy and too tired to post.
A lot has happened since last weekend. Zachary was admitted to the hospital on Sunday after showing signs of congestive heart failure because of the flood of blood that was swamping his heart, a result of the artery that had connected to a vein near his tiny ticker.
We didn't really know how sick he was until after surgery when the docs told us that his heart eventually would have stopped working from fatigue had they not fixed the problem. One of the surgeons actually said "I'm not saying it would have happened in the next couple days, but it would have happened eventually." Ok then.
The near four hour procedure was rough for us all. They placed two metal coils and some metal wire (actually nickel and titanium to be exact) in the connection between the artery and vein to make the blood flow where it's supposed to. Upon doing so they said his heart rate dropped back to near normal almost immediately and the blood that had been pooling under his eye as a result of the venous congestion started dissipating.
The waiting was the hard part for us. We got updates about every hour from one of the nurses who was assisting with the procedures. It took so long because they also did a heart catheterization to measure the pressure in his ventricles (which was just slightly elevated) and checked to see whether he had any additional arteriovenous abnormalities in his lungs, which he thankfully did not.
He rested comfortably for the first few hours after surgery, thanks to some sedatives and pain-killers. Then he woke up and was not too happy. The docs thought it was a hangover from the anesthesia since he was under a long time for such a little guy. Had a very rough night that night with a really high heart rate and some vomiting, but he calmed down over the next couple days.
We're very happy obviously to have caught the problem in time. But a test before he was discharged showed there was some residual flow of blood around the coils and wires that are supposed to stop that from happening. Hoping that will resolve itself or he may need to go back in a month or so to have some more metal inserted to dam-up the vessels.
The other unfortunate occurrence is that he hasn't eaten much by mouth since the surgery. Not sure why but we're going to be devastated if he stops eating orally after we spent to much time weaning him from his feeding tube, which his pulmonologist wants us to start using again, at least overnight. He labels him as "failure to thrive," which is a sort of catch-all term for kids who aren't gaining weight and getting enough nutrition.
We've worked hard getting him where he is, or was pre-surgery, and will do everything we can to avoid tube feeds with artificial formula, but we'll need to fatten him up soon or any weaning from the ventilator, and subsequent removal of the trach, will be delayed. But the consensus seems to be that fixing the blood flow problem may help his overall health, allowing him to breathe easier, burn fewer calories doing so, and perhaps gain weight faster. Let's hope!
Things went well, then, everything considered. Whew . . .
A lot has happened since last weekend. Zachary was admitted to the hospital on Sunday after showing signs of congestive heart failure because of the flood of blood that was swamping his heart, a result of the artery that had connected to a vein near his tiny ticker.
We didn't really know how sick he was until after surgery when the docs told us that his heart eventually would have stopped working from fatigue had they not fixed the problem. One of the surgeons actually said "I'm not saying it would have happened in the next couple days, but it would have happened eventually." Ok then.
The near four hour procedure was rough for us all. They placed two metal coils and some metal wire (actually nickel and titanium to be exact) in the connection between the artery and vein to make the blood flow where it's supposed to. Upon doing so they said his heart rate dropped back to near normal almost immediately and the blood that had been pooling under his eye as a result of the venous congestion started dissipating.
The waiting was the hard part for us. We got updates about every hour from one of the nurses who was assisting with the procedures. It took so long because they also did a heart catheterization to measure the pressure in his ventricles (which was just slightly elevated) and checked to see whether he had any additional arteriovenous abnormalities in his lungs, which he thankfully did not.
He rested comfortably for the first few hours after surgery, thanks to some sedatives and pain-killers. Then he woke up and was not too happy. The docs thought it was a hangover from the anesthesia since he was under a long time for such a little guy. Had a very rough night that night with a really high heart rate and some vomiting, but he calmed down over the next couple days.
We're very happy obviously to have caught the problem in time. But a test before he was discharged showed there was some residual flow of blood around the coils and wires that are supposed to stop that from happening. Hoping that will resolve itself or he may need to go back in a month or so to have some more metal inserted to dam-up the vessels.
The other unfortunate occurrence is that he hasn't eaten much by mouth since the surgery. Not sure why but we're going to be devastated if he stops eating orally after we spent to much time weaning him from his feeding tube, which his pulmonologist wants us to start using again, at least overnight. He labels him as "failure to thrive," which is a sort of catch-all term for kids who aren't gaining weight and getting enough nutrition.
We've worked hard getting him where he is, or was pre-surgery, and will do everything we can to avoid tube feeds with artificial formula, but we'll need to fatten him up soon or any weaning from the ventilator, and subsequent removal of the trach, will be delayed. But the consensus seems to be that fixing the blood flow problem may help his overall health, allowing him to breathe easier, burn fewer calories doing so, and perhaps gain weight faster. Let's hope!
Things went well, then, everything considered. Whew . . .
Friday, August 10, 2012
NICU . . . PICU . . . CICU
We'll be hitting the trifecta, so to speak, on Sunday, though it's not one we are looking forward to winning.
The trio to which I refer is the third different ICU that Zachary soon will be visiting. He was in the Neonatal ICU for his first eight months, then had several stints in the Pediatric ICU over the past year. And now he'll be spending some time in the Cardiac ICU starting Sunday in preparation for surgery the following day to fix his AVM.
We weren't expecting surgery so soon but his condition has worsened over the past week or so. His heart rate is getting higher as his heart compensates for the short-circuited blood flow created by the tangled vessels. He's also been breathing faster and the amount of oxygen in his blood has crept close to dropping below the level his cardiologist and pulmonologist are comfortable with.
The plan is to thread a catheter through his groin to his heart and inject contrast dye so they can see what exactly is going on with the vessels. Then, absent any other problems, use a metal coil to divert the blood flow back where it's supposed to go, a procedure called an arteriogram with embolization.
Then they'll also perform a pulmonary angiograph, which is similar, but to check for vessel malformations in his lungs. The lung doc wants to rule out an underlying genetic condition called Hereditary Hemorrhagic Telangiectasis (HHT) that could be causing abnormal blood vessel formation in his lungs. Not going to worry about that now though.
We're really bummed about the coming hospitalization. Best case is he'll be in for three or four days if all goes well. Could be longer if it doesn't.
It's going to be sad to see him poked and prodded again and not understand why we aren't stopping his pain. And he'll probably be most troubled by being caged up in the hospital cribs, which are really like little jails, bars and all.
We'll see what happens.
The trio to which I refer is the third different ICU that Zachary soon will be visiting. He was in the Neonatal ICU for his first eight months, then had several stints in the Pediatric ICU over the past year. And now he'll be spending some time in the Cardiac ICU starting Sunday in preparation for surgery the following day to fix his AVM.
We weren't expecting surgery so soon but his condition has worsened over the past week or so. His heart rate is getting higher as his heart compensates for the short-circuited blood flow created by the tangled vessels. He's also been breathing faster and the amount of oxygen in his blood has crept close to dropping below the level his cardiologist and pulmonologist are comfortable with.
The plan is to thread a catheter through his groin to his heart and inject contrast dye so they can see what exactly is going on with the vessels. Then, absent any other problems, use a metal coil to divert the blood flow back where it's supposed to go, a procedure called an arteriogram with embolization.
Then they'll also perform a pulmonary angiograph, which is similar, but to check for vessel malformations in his lungs. The lung doc wants to rule out an underlying genetic condition called Hereditary Hemorrhagic Telangiectasis (HHT) that could be causing abnormal blood vessel formation in his lungs. Not going to worry about that now though.
We're really bummed about the coming hospitalization. Best case is he'll be in for three or four days if all goes well. Could be longer if it doesn't.
It's going to be sad to see him poked and prodded again and not understand why we aren't stopping his pain. And he'll probably be most troubled by being caged up in the hospital cribs, which are really like little jails, bars and all.
We'll see what happens.
Friday, August 3, 2012
can't make this stuff up
6:30 a.m. -- walked in on nurse about to give Zachary TOO MUCH of the WRONG medicine
7:15 a.m. -- needed to suction Zachary but nurse failed to replace suction catheter without telling me
1:00 p.m. -- nurse mistakenly turns off vent heater wire
4:15 p.m. -- pulmonologist calls to cancel sleep study because of AVM
5:30 p.m. -- nurse throws bag of garbage on porch (not in garbage can)
8:15 p.m. -- found a Viagra pill (not ours) on the floor in Zachary's play room
7:15 a.m. -- needed to suction Zachary but nurse failed to replace suction catheter without telling me
1:00 p.m. -- nurse mistakenly turns off vent heater wire
4:15 p.m. -- pulmonologist calls to cancel sleep study because of AVM
5:30 p.m. -- nurse throws bag of garbage on porch (not in garbage can)
8:15 p.m. -- found a Viagra pill (not ours) on the floor in Zachary's play room
Thursday, August 2, 2012
AVM
Finally found out what's been causing the blue arm and other assorted symptoms Zachary has been experiencing the past few weeks. It's called an Arteriovenous Malformation, or AVM, for short.
It was hard to follow the explanation we got from the docs but here goes. One of the arteries in his right upper chest sprang a leak sometime ago (probably because it was nicked by one of the central lines he had in the past) and established a connection, referred to as a shunt or fistula, with a nearby vein. Then the capillaries in the area intertwined themselves around the whole thing creating a tangled mess of blood vessels.
The result: oxygenated blood coming from his heart is not going to his arm like it is supposed to. Instead it is taking a short cut through the connection between the artery and vein and is being shuttled right back to his heart, making his heart work harder than it should. The concerns are twofold. First, the vessels could weaken and start bleeding badly. Second, his heart could be jeopardized because it is trying to compensate for the diverted blood flow. Both would be life threatening.
AVMs are more common in the brain, though they can appear anywhere in the organs, torso, or limbs. Many people who have them are asymptomatic, in which case surgical intervention may be eschewed. But action is indicated in most cases when symptoms are present, as in Zachary's case.
Aside from his arm turning blue, it gets cold and swells, and his heart rate has increased by about 20 beats per minute, indicating increased strain on his heart. And he's been a little uncoordinated the past week or so, stumbling around and struggling to keep his balance. These symptoms are not unusual for people with AVMs, apparently.
His cardiologist has consulted with a vascular surgeon, who is devising a plan of attack, which will involve one or more procedures to alleviate the problem. He'll have to be in the cardiac ICU as a precaution following the surgery, which I think is just hospital protocol and not because of specific concerns.
We're sad, of course, that our little guy has to go through more invasive tinkering with his insides. And we're also frustrated that this might delay the mid-August sleep study that could allow us to start weaning the vent. Seems like we keep taking two steps forward and one, or more, back.
Should know in the next day or so what the plan will be.
It was hard to follow the explanation we got from the docs but here goes. One of the arteries in his right upper chest sprang a leak sometime ago (probably because it was nicked by one of the central lines he had in the past) and established a connection, referred to as a shunt or fistula, with a nearby vein. Then the capillaries in the area intertwined themselves around the whole thing creating a tangled mess of blood vessels.
The result: oxygenated blood coming from his heart is not going to his arm like it is supposed to. Instead it is taking a short cut through the connection between the artery and vein and is being shuttled right back to his heart, making his heart work harder than it should. The concerns are twofold. First, the vessels could weaken and start bleeding badly. Second, his heart could be jeopardized because it is trying to compensate for the diverted blood flow. Both would be life threatening.
AVMs are more common in the brain, though they can appear anywhere in the organs, torso, or limbs. Many people who have them are asymptomatic, in which case surgical intervention may be eschewed. But action is indicated in most cases when symptoms are present, as in Zachary's case.
Aside from his arm turning blue, it gets cold and swells, and his heart rate has increased by about 20 beats per minute, indicating increased strain on his heart. And he's been a little uncoordinated the past week or so, stumbling around and struggling to keep his balance. These symptoms are not unusual for people with AVMs, apparently.
His cardiologist has consulted with a vascular surgeon, who is devising a plan of attack, which will involve one or more procedures to alleviate the problem. He'll have to be in the cardiac ICU as a precaution following the surgery, which I think is just hospital protocol and not because of specific concerns.
We're sad, of course, that our little guy has to go through more invasive tinkering with his insides. And we're also frustrated that this might delay the mid-August sleep study that could allow us to start weaning the vent. Seems like we keep taking two steps forward and one, or more, back.
Should know in the next day or so what the plan will be.
Thursday, July 26, 2012
bruit
Yeah -- we didn't know what that was either until recently.
We found out though after Zachary's right arm started turning blue. Turns out a bruit is the sound that blood makes when it rushes past an obstruction, like a blood clot. Not sure that's what it is yet, but the pediatrician and cardiologist are sufficiently concerned that they've decided to do an ultrasound to find out.
His arm started turning purplish-blue a couple weeks ago. Sometimes just for a few minutes. Sometimes for half an hour or so. The thought is that maybe some blood on the way back to the heart is being blocked from leaving his arm because of an obstruction somwehere.
He had an U/S a while back because he has some prominent veins in his neck and chest that his cardiologist thinks may be the result of previous clots, which are not uncommon in kiddos who have had risk factors like central lines, of which he had three for many, many months. Too soon to speculate on what the path forward will be if clots are found, though the good news is that it appears not to be cardiac related.
The coming month is going to be important because, in addition to the U/S, he has another sleep study scheduled mid-month. The study will require an overnight in the hospital and help determine whether he still needs to be on he ventilator when sleeping.
If not, we will probably be able to start weaning that in hopes of shedding it for good in the Fall. If he still needs the vent, probably will be vent-dependent at night through year's end, when the sleep study will be repeated.
Keep your fingers crossed!
We found out though after Zachary's right arm started turning blue. Turns out a bruit is the sound that blood makes when it rushes past an obstruction, like a blood clot. Not sure that's what it is yet, but the pediatrician and cardiologist are sufficiently concerned that they've decided to do an ultrasound to find out.
His arm started turning purplish-blue a couple weeks ago. Sometimes just for a few minutes. Sometimes for half an hour or so. The thought is that maybe some blood on the way back to the heart is being blocked from leaving his arm because of an obstruction somwehere.
He had an U/S a while back because he has some prominent veins in his neck and chest that his cardiologist thinks may be the result of previous clots, which are not uncommon in kiddos who have had risk factors like central lines, of which he had three for many, many months. Too soon to speculate on what the path forward will be if clots are found, though the good news is that it appears not to be cardiac related.
The coming month is going to be important because, in addition to the U/S, he has another sleep study scheduled mid-month. The study will require an overnight in the hospital and help determine whether he still needs to be on he ventilator when sleeping.
If not, we will probably be able to start weaning that in hopes of shedding it for good in the Fall. If he still needs the vent, probably will be vent-dependent at night through year's end, when the sleep study will be repeated.
Keep your fingers crossed!
Tuesday, July 17, 2012
another one?
Let me start by providing the following disclaimer: Erin authorized and approved this post, so I'm not betraying a marital confidence or anything like that. You paying attention now?
So here it is: I want Zachary to have a brother or sister. There are lots of reasons not to have another baby. I'm too old (and let me be clear on this point: I'm just referring to me, not Erin). Zachary's medical conditions are a LOT of work and will be for some time. And the most important: there's a 25 percent chance that the same problems that led to Zachary's early birth could happen again.
I don't think I could ever put another child through what Zachary had to go through, and what he continues to deal with. He was in so much pain for so long that well-meaning doctors, who had taken an oath to do no harm, raised the subject of taking him off life support because it might be the more humane thing to do, both to stop his suffering and avoid the profound mental and physical disabilities that could accompany a child born so soon who was subjected to such invasive medical interventions.
We would have (and almost did) if we would have thought all hope was lost and he didn't have any fight left in him. But I'll swear to my dying day that he wanted us to keep fighting for him. Maybe that was just wishful thinking to assuage our guilt, but he proved tougher and more resilient than anyone expected. So the idea of a one-in-four chance that something like that might happen again scares the hell out of me and should extinguish any idea about trying to have another one.
But . . .
Zachary has given my life a new meaning and direction that was lacking before his arrival. I feel like I've finally done something with my life that means something to someone. I have a purpose, each and every day, and it's very simple: love my little boy and take care of his needs, whatever they are and however I can.
We missed most of the fun pregnancy stuff, like readying the baby's room, waiting for labor to start, wheeling mom and baby out of the hospital after three days for the big homecoming. I'd like to have those experiences. I don't blame anyone for thinking that sounds selfish. Maybe it is.
We were more than three months from his due date when the doctor told Erin on a Saturday morning "we have to get the baby out, NOW!" Then a half dozen doctors and nurses showed up. We asked them to clear the room for a minute so we could collect our thoughts. They gave us about 15 seconds.
I feel guilty when I feel sorry for myself about what happened, how it happened, and how it has impacted out lives. I know we're lucky he's alive and doing so well. Some parents aren't as fortunate, as we saw firsthand too many times. And don't get me wrong, it's not that I'm not satisfied with having just him. Hard to explain I guess.
Erin is not of the same mind as me on the matter. Not upset at all. Can totally understand her perspective. So unless she wants a sister wife (and why would any guy want more than one wife anyway?) we won't be having another one.
Disappointing.
So here it is: I want Zachary to have a brother or sister. There are lots of reasons not to have another baby. I'm too old (and let me be clear on this point: I'm just referring to me, not Erin). Zachary's medical conditions are a LOT of work and will be for some time. And the most important: there's a 25 percent chance that the same problems that led to Zachary's early birth could happen again.
I don't think I could ever put another child through what Zachary had to go through, and what he continues to deal with. He was in so much pain for so long that well-meaning doctors, who had taken an oath to do no harm, raised the subject of taking him off life support because it might be the more humane thing to do, both to stop his suffering and avoid the profound mental and physical disabilities that could accompany a child born so soon who was subjected to such invasive medical interventions.
We would have (and almost did) if we would have thought all hope was lost and he didn't have any fight left in him. But I'll swear to my dying day that he wanted us to keep fighting for him. Maybe that was just wishful thinking to assuage our guilt, but he proved tougher and more resilient than anyone expected. So the idea of a one-in-four chance that something like that might happen again scares the hell out of me and should extinguish any idea about trying to have another one.
But . . .
Zachary has given my life a new meaning and direction that was lacking before his arrival. I feel like I've finally done something with my life that means something to someone. I have a purpose, each and every day, and it's very simple: love my little boy and take care of his needs, whatever they are and however I can.
We missed most of the fun pregnancy stuff, like readying the baby's room, waiting for labor to start, wheeling mom and baby out of the hospital after three days for the big homecoming. I'd like to have those experiences. I don't blame anyone for thinking that sounds selfish. Maybe it is.
We were more than three months from his due date when the doctor told Erin on a Saturday morning "we have to get the baby out, NOW!" Then a half dozen doctors and nurses showed up. We asked them to clear the room for a minute so we could collect our thoughts. They gave us about 15 seconds.
I feel guilty when I feel sorry for myself about what happened, how it happened, and how it has impacted out lives. I know we're lucky he's alive and doing so well. Some parents aren't as fortunate, as we saw firsthand too many times. And don't get me wrong, it's not that I'm not satisfied with having just him. Hard to explain I guess.
Erin is not of the same mind as me on the matter. Not upset at all. Can totally understand her perspective. So unless she wants a sister wife (and why would any guy want more than one wife anyway?) we won't be having another one.
Disappointing.
Thanks for everything, Miss Cat!
Zachary had his last session today with his favorite therapist who is leaving the area, unfortunately.
We are all sad to see her go. She has played a very instrumental role in helping Zachary overcome his early birth and catch up to where most kids are developmentally at his age. His fantastic progress over the past year is due in large part to her work with him and the guidance she gave us.
She's helped him roll over, sit, stand, climb stairs, and walk, way before we thought he'd reach any of these milestones. She always had a positive attitude, even when Zachary was tired and fussy and uncooperative. We will make sure to tell Zachary when he gets older how lucky he was to have such a talented and dedicated physical therapist.
Everyone at the White House wishes her well and will miss her, especially Zachary, even if he doesn't know it just yet.
We are all sad to see her go. She has played a very instrumental role in helping Zachary overcome his early birth and catch up to where most kids are developmentally at his age. His fantastic progress over the past year is due in large part to her work with him and the guidance she gave us.
She's helped him roll over, sit, stand, climb stairs, and walk, way before we thought he'd reach any of these milestones. She always had a positive attitude, even when Zachary was tired and fussy and uncooperative. We will make sure to tell Zachary when he gets older how lucky he was to have such a talented and dedicated physical therapist.
Everyone at the White House wishes her well and will miss her, especially Zachary, even if he doesn't know it just yet.
Saturday, July 14, 2012
we have an eater . . . and a screamer . . . and happy parents
The tube wean is over.
And the results? He's now an eater, according to his occupational and speech therapists. He's not exactly eating everything or as much as he should be for his age, but he's eating, which he wasn't three weeks ago.
His favorites are vanilla yogurt, mixed with some purees, like pears or prunes (when, you know, he needs a little extra help), and rice cereal. He'll eat a whole bowl full. I'm embarrassed to say it's not too bad, even the prunes. We even mix some mashed avocado in every now and again, just to give him a few extra calories, which he doesn't seem to mind.
The process was full of ups and downs and tears and cheers. And lots of food. On the floor. On the carpet. On the walls. On . . . well, you get the picture. Things weren't looking so good about a week ago. He had made some progress but still wasn't a willing participant. But the last week has seen the little guy go from unhappily tolerating a few bites of purees to putting a death grip on the spoon and shoveling the grub in faster than he can swallow it.
He still has trouble with solids, even meltable ones, and usually gags and sometimes barfs when he gets a crumb or two in his mouth and has to swallow them. But we think all the practice he's getting with the pasty mixture he's now eating will get him used to chewing and swallowing, hopefully soon. And his therapists think that as he develops better oral and motor skills he will be willing to bite and chew some substantial solids since he'll be more in control of what and how much goes in his mouth.
So all-in-all, I'd have to say the wean was reasonably successful. Didn't achieve all the goals we had hoped for, but made some great progress and hopefully established a solid foundation for future gains. And he only lost about 1/2 a pound during the process, or about 2.5 percent his body weight.
We've also learned that, as he has gained more control over his feeding, he has decided to exert this new found independence in other areas, like screaming to make his intentions known. Sometimes he screams when he wants something, like to go outside, and sometimes he screams because he's happy, or tired, or hungry, or who knows why. I thought it was funny at first. Not so much anymore.
We're really happy though that he's getting all his nutrition from real food and not from the sugary synthetic formula he had been drinking. We still give him a couple bottles of whole milk each day to make sure he's getting enough calories, but we haven't had to use his feeding tube for weeks, except to give him medicine and a little extra water when he's been dehydrated.
So we have an eater, and a screamer, and a couple happy parents.
And the results? He's now an eater, according to his occupational and speech therapists. He's not exactly eating everything or as much as he should be for his age, but he's eating, which he wasn't three weeks ago.
His favorites are vanilla yogurt, mixed with some purees, like pears or prunes (when, you know, he needs a little extra help), and rice cereal. He'll eat a whole bowl full. I'm embarrassed to say it's not too bad, even the prunes. We even mix some mashed avocado in every now and again, just to give him a few extra calories, which he doesn't seem to mind.
The process was full of ups and downs and tears and cheers. And lots of food. On the floor. On the carpet. On the walls. On . . . well, you get the picture. Things weren't looking so good about a week ago. He had made some progress but still wasn't a willing participant. But the last week has seen the little guy go from unhappily tolerating a few bites of purees to putting a death grip on the spoon and shoveling the grub in faster than he can swallow it.
He still has trouble with solids, even meltable ones, and usually gags and sometimes barfs when he gets a crumb or two in his mouth and has to swallow them. But we think all the practice he's getting with the pasty mixture he's now eating will get him used to chewing and swallowing, hopefully soon. And his therapists think that as he develops better oral and motor skills he will be willing to bite and chew some substantial solids since he'll be more in control of what and how much goes in his mouth.
So all-in-all, I'd have to say the wean was reasonably successful. Didn't achieve all the goals we had hoped for, but made some great progress and hopefully established a solid foundation for future gains. And he only lost about 1/2 a pound during the process, or about 2.5 percent his body weight.
We've also learned that, as he has gained more control over his feeding, he has decided to exert this new found independence in other areas, like screaming to make his intentions known. Sometimes he screams when he wants something, like to go outside, and sometimes he screams because he's happy, or tired, or hungry, or who knows why. I thought it was funny at first. Not so much anymore.
We're really happy though that he's getting all his nutrition from real food and not from the sugary synthetic formula he had been drinking. We still give him a couple bottles of whole milk each day to make sure he's getting enough calories, but we haven't had to use his feeding tube for weeks, except to give him medicine and a little extra water when he's been dehydrated.
So we have an eater, and a screamer, and a couple happy parents.
Wednesday, July 4, 2012
derecho
Don't know what a derecho is? Neither did I until last Friday when one blew through the DC-area, wreaking havoc, outing the power, and extinguishing the AC during a string of 100-plus degree days.
For the record, a derecho is a wide-spread and long-lived straight-line windstorm. Got that? It plunged Northern Virginia into chaos temporarily, darkening traffic lights, downing trees, and closing gas stations, hotels, and most places to get coffee.
We had about a 1/2 hour warning of its impending arrival and were able to get the emergency batteries ready to be connected when we lost power, which was almost immediately as the storm arrived. But the battery that was supposed to last 9 hours lasted only one. Had another back-up that lasted through the night, until we were able to get to a friend's house (thanks Ally!) who had power.
Fortunately the power came back on after a couple days, though not before all our food spoiled and the cat almost wilted. We were lucky compared to some who five full days after the storm still don't have power. I could live without any additional derecho's for a while. Weather guys say this happens in our area about once every five years, though I don't ever remember experiencing one in my many years in DC.
The disruption really impinged upon the tube weaning. We did our best to keep Zachary focused and moving forward, however. He kept trying (licking) new solids and even accidentally swallowed a tiny bit of wheat bread and pita chip, though he choked and gagged. He even had some really spicy cheese and pepperoni, though he has gotten into the habit of licking something once then tossing it wherever, like on the floor, wall, or couch.
We've started replacing the remaining formula he's getting with whole milk. He hasn't seemed to notice. Probably will cut back further on the formula in a day or two. He's been remarkably well behaved throughout this ordeal (both the storm and starvation) though he has had his inconsolable moments.
So we're making slow progress. Hope he picks up the pace soon.
For the record, a derecho is a wide-spread and long-lived straight-line windstorm. Got that? It plunged Northern Virginia into chaos temporarily, darkening traffic lights, downing trees, and closing gas stations, hotels, and most places to get coffee.
We had about a 1/2 hour warning of its impending arrival and were able to get the emergency batteries ready to be connected when we lost power, which was almost immediately as the storm arrived. But the battery that was supposed to last 9 hours lasted only one. Had another back-up that lasted through the night, until we were able to get to a friend's house (thanks Ally!) who had power.
Fortunately the power came back on after a couple days, though not before all our food spoiled and the cat almost wilted. We were lucky compared to some who five full days after the storm still don't have power. I could live without any additional derecho's for a while. Weather guys say this happens in our area about once every five years, though I don't ever remember experiencing one in my many years in DC.
The disruption really impinged upon the tube weaning. We did our best to keep Zachary focused and moving forward, however. He kept trying (licking) new solids and even accidentally swallowed a tiny bit of wheat bread and pita chip, though he choked and gagged. He even had some really spicy cheese and pepperoni, though he has gotten into the habit of licking something once then tossing it wherever, like on the floor, wall, or couch.
We've started replacing the remaining formula he's getting with whole milk. He hasn't seemed to notice. Probably will cut back further on the formula in a day or two. He's been remarkably well behaved throughout this ordeal (both the storm and starvation) though he has had his inconsolable moments.
So we're making slow progress. Hope he picks up the pace soon.
Friday, June 29, 2012
the wall
It was bound to happen sooner or later.
Zachary hit the wall this morning. Not the one Pink Floyd sang about or the one I hit at mile 22 of the marathon I ran many years ago, but the one where he became so hungry he simply was unable to deal with his emotions. And it wasn't pretty. It ended up being about a half hour of uncontrollable crying followed by 15 minutes of laying flat on his back staring into space. Could have been worse but it was tough seeing him so upset and signing for his bottle and not understanding why we weren't giving it to him.
We're now on day 5 of the tube wean and it is clear that it is about to get ugly. Real ugly. We kinda expected it. The therapist overseeing the wean called from Germany yesterday to warn us that, based on her experience and the progress we've made so far, she thought a big meltdown was coming in the next day or two. And it will coincide with a further reduction in the number of calories and amount of fluid he'll be getting. The last couple days he's only received about a quarter the usual calories he had been getting before we started this torture known as feeding therapy.
Right now we're forgoing his first two bottles and offering his purees and solids instead. If he doesn't eat anything, he gets nothing until his 1:30 p.m. bottle. That bottle may be on its way out too this weekend, along with the Pediasure (the high calorie, sugary, artificial junk he drinks) in favor of whole milk. The therapists have explained that there's a connection between thirst and hunger and the willingness to try purees and solids. We basically need to get him good and hungry before he'll be open to transitioning from simply licking foods to actually biting, chewing, and swallowing them.
We feel like terrible parents to be denying him such a basic necessity of life, but it's for his own good. And we are doing it under the supervision of his pediatrician, an occupational therapist, a speech therapist, and a physical therapist, so he's being well monitored for any signs of distress that would halt the wean. It's still tough though, perhaps the most difficult thing we've seen so far in his short life, maybe even more so than the surgeries and blood transfusions, and tubes and wires that were commonplace his first eight months. I guess it's because he's self aware now compared to then.
I just wish he understood short-term pain for long-term gain.
Zachary hit the wall this morning. Not the one Pink Floyd sang about or the one I hit at mile 22 of the marathon I ran many years ago, but the one where he became so hungry he simply was unable to deal with his emotions. And it wasn't pretty. It ended up being about a half hour of uncontrollable crying followed by 15 minutes of laying flat on his back staring into space. Could have been worse but it was tough seeing him so upset and signing for his bottle and not understanding why we weren't giving it to him.
We're now on day 5 of the tube wean and it is clear that it is about to get ugly. Real ugly. We kinda expected it. The therapist overseeing the wean called from Germany yesterday to warn us that, based on her experience and the progress we've made so far, she thought a big meltdown was coming in the next day or two. And it will coincide with a further reduction in the number of calories and amount of fluid he'll be getting. The last couple days he's only received about a quarter the usual calories he had been getting before we started this torture known as feeding therapy.
Right now we're forgoing his first two bottles and offering his purees and solids instead. If he doesn't eat anything, he gets nothing until his 1:30 p.m. bottle. That bottle may be on its way out too this weekend, along with the Pediasure (the high calorie, sugary, artificial junk he drinks) in favor of whole milk. The therapists have explained that there's a connection between thirst and hunger and the willingness to try purees and solids. We basically need to get him good and hungry before he'll be open to transitioning from simply licking foods to actually biting, chewing, and swallowing them.
We feel like terrible parents to be denying him such a basic necessity of life, but it's for his own good. And we are doing it under the supervision of his pediatrician, an occupational therapist, a speech therapist, and a physical therapist, so he's being well monitored for any signs of distress that would halt the wean. It's still tough though, perhaps the most difficult thing we've seen so far in his short life, maybe even more so than the surgeries and blood transfusions, and tubes and wires that were commonplace his first eight months. I guess it's because he's self aware now compared to then.
I just wish he understood short-term pain for long-term gain.
Wednesday, June 27, 2012
Now that's my boy!
There's never been any doubt that Zachary's my boy. Sit us side by side and I look like his older, fatter twin. But today confirmed it for sure when we found out that he has actually gained an ounce since his tube wean started two days ago.
What?
Most kids lose weight, of course. Some as much as 10 percent of their total poundage. Zachary's doctor set a strict limit of 5 percent weight loss, at which time the wean would have to be put on hold. But he has gained instead so far. His care team thinks it is because he hasn't vomited since Friday and consequently is keeping in more than is going out. (Thank you, Prevacid, for being the wonder drug that you apparently are).
Days 2 and 3 of the wean have seen him drinking more of his bottles and getting less water. Soon he's going to start getting less and less of the formula by bottle until, we hope, he eats something, anything. He's starting to explore some new foods, and by explore I mean lick. He has tasted some beef jerky, spicy chips, salty pita chips, sour apples and nectarines. Today we are going to try some pineapple chunks and mandarin oranges, maybe some frosted blueberry pop-tarts, and perhaps some Blazin' Buffalo and Ranch Doritos.
Part of the therapy involves modeling so he can see us eat, so we learned quickly to buy things we don't mind eating too. Probably the only time we'll ever have this much junk food in the house. And before anyone starts thinking about making any fat jokes (you know who you are) I've lost 20 pounds over the past three months, though it has been tough not to snack away with my boy.
So far so good.
What?
Most kids lose weight, of course. Some as much as 10 percent of their total poundage. Zachary's doctor set a strict limit of 5 percent weight loss, at which time the wean would have to be put on hold. But he has gained instead so far. His care team thinks it is because he hasn't vomited since Friday and consequently is keeping in more than is going out. (Thank you, Prevacid, for being the wonder drug that you apparently are).
Days 2 and 3 of the wean have seen him drinking more of his bottles and getting less water. Soon he's going to start getting less and less of the formula by bottle until, we hope, he eats something, anything. He's starting to explore some new foods, and by explore I mean lick. He has tasted some beef jerky, spicy chips, salty pita chips, sour apples and nectarines. Today we are going to try some pineapple chunks and mandarin oranges, maybe some frosted blueberry pop-tarts, and perhaps some Blazin' Buffalo and Ranch Doritos.
Part of the therapy involves modeling so he can see us eat, so we learned quickly to buy things we don't mind eating too. Probably the only time we'll ever have this much junk food in the house. And before anyone starts thinking about making any fat jokes (you know who you are) I've lost 20 pounds over the past three months, though it has been tough not to snack away with my boy.
So far so good.
Tuesday, June 26, 2012
developmental assessment
The City's social services board came today to conduct Zachary's developmental assessment and determine his eligibility for early intervention services.
The result: He is eligible for services for another year because he is at least 25 percent delayed in multiple developmental areas and exhibits atypical development. Although he's 20 months old, he functions at the following levels:
Gross motor skills: 13-15 months
Fine motor skills: 12-15 months
Self-help: 12-15 months
Expressive language: 9-11.5 months
Receptive language: 8-12 months
Cognitive: 12-19 months
Social-emotional: 12-15 months
We think his report card is pretty damn good, especially considering all the surgeries and the fact that he spent his first eight months (249 days) in the hospital on his back. His physical therapist and speech therapist think he's doing wonderfully as well. He is farther along intellectually than physically, but everyone expects him to catch up in the next couple years, though he may always be a small little guy.
So good going, little man. We're mighty proud of you!
The result: He is eligible for services for another year because he is at least 25 percent delayed in multiple developmental areas and exhibits atypical development. Although he's 20 months old, he functions at the following levels:
Gross motor skills: 13-15 months
Fine motor skills: 12-15 months
Self-help: 12-15 months
Expressive language: 9-11.5 months
Receptive language: 8-12 months
Cognitive: 12-19 months
Social-emotional: 12-15 months
We think his report card is pretty damn good, especially considering all the surgeries and the fact that he spent his first eight months (249 days) in the hospital on his back. His physical therapist and speech therapist think he's doing wonderfully as well. He is farther along intellectually than physically, but everyone expects him to catch up in the next couple years, though he may always be a small little guy.
So good going, little man. We're mighty proud of you!
Tube wean (day 1)
This is gonna be brutal.
Started the dreaded tube wean yesterday. We started by withholding the formula he normally would get through his g-tube and instead just giving him water. We normally let him drink his formula by bottle and then whatever he doesn't take orally he gets the rest through the tube. But yesterday, instead of getting the formula in the tube, he just got water. And he was pissed. (See the attached video).
But the odd thing was, he didn't devour his next bottle. Or the next one. Or the one after that.
Much to our surprise, he didn't drink anything at all, at 1:30p, 4:45p, or 8:00p. We think it may be because he started taking an acid blocker on Friday because he was vomiting massive amounts, like 10 times a day. Good news is that he hasn't vomited since. Bad news is that it seems to have suppressed his appetite. Not the optimum outcome when his therapy is based on having him "develop a relationship with hunger." I didn't make that up, by the way, that's what we're aiming for.
Today's therapy will be more intensive and hands on with two visits from the feeding expert. We did get him to lick some Doritos this morning, as well as a sour apple slice. And just now he licked some spicy beef jerky. He turned down a rice crispy treat though. Man I am getting hungry!
Keep your fingers crossed we make some progress today.
Started the dreaded tube wean yesterday. We started by withholding the formula he normally would get through his g-tube and instead just giving him water. We normally let him drink his formula by bottle and then whatever he doesn't take orally he gets the rest through the tube. But yesterday, instead of getting the formula in the tube, he just got water. And he was pissed. (See the attached video).
But the odd thing was, he didn't devour his next bottle. Or the next one. Or the one after that.
Much to our surprise, he didn't drink anything at all, at 1:30p, 4:45p, or 8:00p. We think it may be because he started taking an acid blocker on Friday because he was vomiting massive amounts, like 10 times a day. Good news is that he hasn't vomited since. Bad news is that it seems to have suppressed his appetite. Not the optimum outcome when his therapy is based on having him "develop a relationship with hunger." I didn't make that up, by the way, that's what we're aiming for.
Today's therapy will be more intensive and hands on with two visits from the feeding expert. We did get him to lick some Doritos this morning, as well as a sour apple slice. And just now he licked some spicy beef jerky. He turned down a rice crispy treat though. Man I am getting hungry!
Keep your fingers crossed we make some progress today.
Thursday, June 21, 2012
BARF
So my kid barfs.
I know, I know, all kids do from time-to-time. But my kid barfs, I mean, he really projectile vomits. And he does it once or twice a day on good days, and three or four or more on bad ones, of which there have been many recently.
When he was still in the hospital we were assured that most children outgrow these messy mouth eruptions after about a year of age. But he's approaching two and things seem to be getting worse instead of better.
None of his doctors have been able to pinpoint a specific cause for the vomiting. The consensus seems to be that there's probably several reasons for all the spewing, such as:
The worst part about it isn't all the laundry (of which there is a lot) or the fact that our house smells like vomit (which it does) but the toll it is taking on him, both physically and psychologically. It breaks our hearts to hear him wretch and know how scared and uncomfortably he is. Makes you want to cry sometimes. And all the vomit, along with all the antibiotics he received while in the hospital, have turned his teeth brownish-yellow and started wearing away at their enamel.
But there's no end in sight right now. Some days are better than others. And some are really, really, bad. But he's such a trooper and soldiers on without missing a beat. I wonder whether he thinks this is normal or whether he knows this shouldn't be happening?
I know, I know, all kids do from time-to-time. But my kid barfs, I mean, he really projectile vomits. And he does it once or twice a day on good days, and three or four or more on bad ones, of which there have been many recently.
When he was still in the hospital we were assured that most children outgrow these messy mouth eruptions after about a year of age. But he's approaching two and things seem to be getting worse instead of better.
None of his doctors have been able to pinpoint a specific cause for the vomiting. The consensus seems to be that there's probably several reasons for all the spewing, such as:
- GERD, or Gastroesophageal Reflux Disease, which is caused by stomach acid coming up from the stomach into the esophagus.
- Delayed stomach empty emptying, which results in his earlier feedings filling up his stomach until there's not room for more.
- Bowel movements, believe it or not, some think he may be straining so hard to poop that it causes him to get sick (which is better than when he was a baby and stopped breathing when he pooped).
- Secretions, which when not suctioned fast enough makes him gag and eventually vomit.
- Tracheostomy tube, which may move in his trachea and make him choke and gag.
The worst part about it isn't all the laundry (of which there is a lot) or the fact that our house smells like vomit (which it does) but the toll it is taking on him, both physically and psychologically. It breaks our hearts to hear him wretch and know how scared and uncomfortably he is. Makes you want to cry sometimes. And all the vomit, along with all the antibiotics he received while in the hospital, have turned his teeth brownish-yellow and started wearing away at their enamel.
But there's no end in sight right now. Some days are better than others. And some are really, really, bad. But he's such a trooper and soldiers on without missing a beat. I wonder whether he thinks this is normal or whether he knows this shouldn't be happening?
Wednesday, June 20, 2012
back again . . . new updates
Been a long while since my last post and a lot has happened.
First, today is noteworthy because it was one year ago today that we brought Zachary home from the hospital for the very first time, 249 days after he was born. In some ways it seems that the year has gone quickly while in others it seems like lifetimes ago. Much has changed since then but a lot remains the same. But we are all in a very different place now than we were then, for better or worse.
We also successfully vacationed to Florida for a family reunion. Zachary traveled 1,920 miles back and forth in the van, met one great grandmother, two grandmothers, and two grandfathers, along with aunts, uncles, and cousins -- and more than a few admiring strangers. The trip took about 17 hours each way, which included about 10 explosive vomits on the way down. Fun for all.
He has also been recovering from his bout with viral pneumonia that landed him in the hospital for a week or so in May. He's pretty much off the extra oxygen during the day that was helping him heal but still gets a little at night just to help him rest easier. Hope we can avoid future lung infections, which are especially harmful to kiddos with bad lungs.
And we are less than a week from starting the tube wean that had been postponed last month because of the illness and resulting hospitalization. The hope is that within three weeks he won't need the feeding tube for anything other than a safety precaution because he'll be eating age-appropriate solids and getting all his calories orally. I am hopeful but not optimistic, though I learned early on not to bet against this tough little guy.
Hope to start posting more regularly again.
Thanks for checking in!
First, today is noteworthy because it was one year ago today that we brought Zachary home from the hospital for the very first time, 249 days after he was born. In some ways it seems that the year has gone quickly while in others it seems like lifetimes ago. Much has changed since then but a lot remains the same. But we are all in a very different place now than we were then, for better or worse.
We also successfully vacationed to Florida for a family reunion. Zachary traveled 1,920 miles back and forth in the van, met one great grandmother, two grandmothers, and two grandfathers, along with aunts, uncles, and cousins -- and more than a few admiring strangers. The trip took about 17 hours each way, which included about 10 explosive vomits on the way down. Fun for all.
He has also been recovering from his bout with viral pneumonia that landed him in the hospital for a week or so in May. He's pretty much off the extra oxygen during the day that was helping him heal but still gets a little at night just to help him rest easier. Hope we can avoid future lung infections, which are especially harmful to kiddos with bad lungs.
And we are less than a week from starting the tube wean that had been postponed last month because of the illness and resulting hospitalization. The hope is that within three weeks he won't need the feeding tube for anything other than a safety precaution because he'll be eating age-appropriate solids and getting all his calories orally. I am hopeful but not optimistic, though I learned early on not to bet against this tough little guy.
Hope to start posting more regularly again.
Thanks for checking in!
Saturday, May 26, 2012
Understanding BPD
Found a good summary of BPD, also known as Chronic Lung Disease, on the American Lung Association's website. This is what has happened to Zachary's lungs and what he is trying to overcome.
Bronchopulmonary dysplasia (BPD) is a lung disease that is seen most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs.
About 5,000 to 10,000 babies born in the United States each year have BPD. More babies today have BPD than 30 years ago because more very premature babies survive.
Most babies with BPD recover, and many are able to have normal, active lives.
Recovery may be a slow process. After your baby leaves the hospital he or she may need continued medication, breathing treatments, or even oxygen at home. Although most children can come off supplemental oxygen by the end of their first year, a few with serious cases may need a breathing machine called a ventilator for several years or, in rare cases, their entire lives.
During the first two years, a child with BPD may have a number of lung infections. You should see the doctor when your baby has a cold, runny nose, cough, chest cold or fever.
Within a year or two, most children who had BPD have few breathing problems. They are not restricted in their activities and do not need special medical treatment.
BPD most commonly occurs as a complication of respiratory therapy in premature infants with respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.
Babies with RDS must have oxygen and often need a machine to help them breathe to prevent brain damage and to save their lives. But, the oxygen premature babies need can damage their lungs by causing inflammation. This can injure the airways. High levels of oxygen also may slow the normal development of the lungs in very premature babies.
When oxygen must be delivered into the babies' lungs by a breathing machine (ventilator or respirator), it may be even more damaging. These machines use pressure to push air into the lungs. But the pressure can irritate the lungs and cause them to become more inflamed. To help avoid this problem, babies may instead be given oxygen through the nose with a nasal continuous positive airway pressure (CPAP) machine.
Infections in premature babies' lungs can be another cause of BPD. The infection causes inflammation, which narrows breathing passages.
What is BPD?
Bronchopulmonary dysplasia (BPD) is a lung disease that is seen most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs.
About 5,000 to 10,000 babies born in the United States each year have BPD. More babies today have BPD than 30 years ago because more very premature babies survive.
How Serious is BPD?
Most babies with BPD recover, and many are able to have normal, active lives.
Recovery may be a slow process. After your baby leaves the hospital he or she may need continued medication, breathing treatments, or even oxygen at home. Although most children can come off supplemental oxygen by the end of their first year, a few with serious cases may need a breathing machine called a ventilator for several years or, in rare cases, their entire lives.
During the first two years, a child with BPD may have a number of lung infections. You should see the doctor when your baby has a cold, runny nose, cough, chest cold or fever.
Within a year or two, most children who had BPD have few breathing problems. They are not restricted in their activities and do not need special medical treatment.
What Causes BPD?
BPD most commonly occurs as a complication of respiratory therapy in premature infants with respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.
Babies with RDS must have oxygen and often need a machine to help them breathe to prevent brain damage and to save their lives. But, the oxygen premature babies need can damage their lungs by causing inflammation. This can injure the airways. High levels of oxygen also may slow the normal development of the lungs in very premature babies.
When oxygen must be delivered into the babies' lungs by a breathing machine (ventilator or respirator), it may be even more damaging. These machines use pressure to push air into the lungs. But the pressure can irritate the lungs and cause them to become more inflamed. To help avoid this problem, babies may instead be given oxygen through the nose with a nasal continuous positive airway pressure (CPAP) machine.
Infections in premature babies' lungs can be another cause of BPD. The infection causes inflammation, which narrows breathing passages.
Thursday, May 24, 2012
Goucher player paralyzed in freak accident
http://www.d3hoops.com/notables/2012/05/goucher-player-paralyzed
This has nothing to do with Zachary, but I wanted to share to remind everyone how fragile life is and how we must live each day to the fullest. I played basketball at Goucher and was on campus shortly after this happened. I can't imagine how Damone and his family are getting through this but I am sure they would appreciate your prayers.
This has nothing to do with Zachary, but I wanted to share to remind everyone how fragile life is and how we must live each day to the fullest. I played basketball at Goucher and was on campus shortly after this happened. I can't imagine how Damone and his family are getting through this but I am sure they would appreciate your prayers.
Friday, May 18, 2012
CRAZY couple weeks
It has been a rough couple weeks around here.
Zachary got pneumonia and spent all last week in the hospital. The viral infection in his lungs was making it more difficult for him to breathe, and consequently, raising his heart rate significantly. We could tell he felt altogether crummy, and last Monday about midnight, went to the hospital after we were having trouble keeping his blood properly oxygenated with the amount of oxygen we had been authorized to administer by his doctors. Ended up in the Pediatric ICU around 4:00 a.m.
He got more O2 and higher vent settings to help him breathe better. He got sicker for a couple days but by Thursday morning was feeling better. Got to go home on Saturday, although he missed the March of Dimes walk, which was that morning. (Team Zachary raised more than $4,100). Although he's on the upswing we still have to give him oxygen 24/7, probably for a couple more weeks until he can maintain his sats on his own. And we've had to suction his increased secretions more often. Seems like we dodged a bullet though, as we've heard that lung infections can be life threatening for kids with BPD (the lung disease he has).
Unfortunately, his homecoming coincided with his day nurse going on vacation, so we had no day or night nurse for most of the following week. Started taking its toll on us after a day or so. Last night we had a nurse and finally got a full night's sleep for the first time since he got home. Didn't want to get out of bed this morning, that's for sure.
The illness has delayed the tube weaning, which was supposed to start the day he ended up in the hospital. Looks like we won't start until the end of June or the beginning of July at the earliest. His pediatrician and therapists want him to be in optimal health when the process begins, as he is expected to lose weight, which he really can't afford to lose since he still weighs less than 17 pounds.
We're all looking forward to going to Florida in a couple weeks for the family reunion. Hope he's ready for all the attention he's going to get!
Zachary got pneumonia and spent all last week in the hospital. The viral infection in his lungs was making it more difficult for him to breathe, and consequently, raising his heart rate significantly. We could tell he felt altogether crummy, and last Monday about midnight, went to the hospital after we were having trouble keeping his blood properly oxygenated with the amount of oxygen we had been authorized to administer by his doctors. Ended up in the Pediatric ICU around 4:00 a.m.
He got more O2 and higher vent settings to help him breathe better. He got sicker for a couple days but by Thursday morning was feeling better. Got to go home on Saturday, although he missed the March of Dimes walk, which was that morning. (Team Zachary raised more than $4,100). Although he's on the upswing we still have to give him oxygen 24/7, probably for a couple more weeks until he can maintain his sats on his own. And we've had to suction his increased secretions more often. Seems like we dodged a bullet though, as we've heard that lung infections can be life threatening for kids with BPD (the lung disease he has).
Unfortunately, his homecoming coincided with his day nurse going on vacation, so we had no day or night nurse for most of the following week. Started taking its toll on us after a day or so. Last night we had a nurse and finally got a full night's sleep for the first time since he got home. Didn't want to get out of bed this morning, that's for sure.
The illness has delayed the tube weaning, which was supposed to start the day he ended up in the hospital. Looks like we won't start until the end of June or the beginning of July at the earliest. His pediatrician and therapists want him to be in optimal health when the process begins, as he is expected to lose weight, which he really can't afford to lose since he still weighs less than 17 pounds.
We're all looking forward to going to Florida in a couple weeks for the family reunion. Hope he's ready for all the attention he's going to get!
Sunday, May 13, 2012
To momma . . .
How Preemie
Moms Are Chosen
by Erma Bombeck
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
by Erma Bombeck
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
Monday, May 7, 2012
tube wean (day 1) . . . not
Today was gonna be the day we started trying to wean the little guy from his stomach tube through which he gets much of his feedings. That got put on hold, however, because Zachary got sick.
We had to make an unscheduled trip to the pediatrician this morning because overnight he was requiring oxygen (and a lot of it considering he hasn't needed it for several weeks) to keep the oxygen saturation of his blood above where it's supposed to be. His heart rate was higher than normal too. And he was coughing and had vomited his earlier feedings, along with being generally fussy, which he almost never is.
The verdict: pneumonia and a partially collapsed right lung. Not the best way to start the week for sure. We're giving him more O2 along with some antibiotics and steroids to see if that helps over the next 24 to 48 hours. If not, we'll be heading to CNMC for a likely admission until his lung improves so he doesn't have to work so hard to breathe.
Tough to see him so uncomfortable and not really be able to help. And a little disappointed that the wean will have to wait for now. We'll keep you posted . . .
We had to make an unscheduled trip to the pediatrician this morning because overnight he was requiring oxygen (and a lot of it considering he hasn't needed it for several weeks) to keep the oxygen saturation of his blood above where it's supposed to be. His heart rate was higher than normal too. And he was coughing and had vomited his earlier feedings, along with being generally fussy, which he almost never is.
The verdict: pneumonia and a partially collapsed right lung. Not the best way to start the week for sure. We're giving him more O2 along with some antibiotics and steroids to see if that helps over the next 24 to 48 hours. If not, we'll be heading to CNMC for a likely admission until his lung improves so he doesn't have to work so hard to breathe.
Tough to see him so uncomfortable and not really be able to help. And a little disappointed that the wean will have to wait for now. We'll keep you posted . . .
Sunday, May 6, 2012
calm before the storm
Things change tomorrow.
That's when we're going to stop feeding Zachary. Not to punish him, but to get him to experience hunger and hopefully start eating baby food and other solids that he should be eating at his age. Right now, he just drinks formula from a bottle, and not even enough to grow sufficiently at that. So we have to give him the extra he passes on through his feeding tube, supplemented with other oils and calories.
This "tube weaning" as it's called is sure to be hell on everyone, especially him. The general plan is to start reducing the amount of formula he's given each day until after about a week, when he'll be denied the stuff entirely in hopes that he will eat solids because he is so hungry. So my guess is we're going to have a hungry, cranky, irritable, and sleep-deprived toddler on our hands after a couple days. (I get cranky when I miss a single meal so I can't imagine how it must feel to miss multiple ones).
Sounds simple enough, in theory. The big obstacle, at least in my mind, is that he generally chokes and barfs whenever any real food makes its way into his mouth. He usually panics and gags whenever this happens. He hasn't even had any solid food in his mouth for almost two month. So to say he's out of practice eating would be an understatement.
Not going to be easy for us either, watching our baby cry out in hunger and wonder why we are not helping him. We've been told by the therapists that parents are often too eager to pull the plug on the wean just before there's about to be a breakthrough. I can totally see that happening. There will undoubtedly be some tension between us and his therapists in this regard, so it will be a stressful time for everyone. But it will be worth it if it works.
Zachary needs to start gaining some weight. He's bounced between 16.5 and 17 pounds for the better part of two months. It could be worse, but it worries me that my almost 19-month old weighs so little, especially if he gets sick. We've been warned to expect that he'll lose weight during the wean, so we'll be seeing his pediatrician every couple days for weigh-ins and general health checks. We'll abort the wean if he loses more than 10 percent of his body weight.
So on this calm Sunday morning we're anticipating the coming storm; hoping it won't be as bad as we think and praying we'll all get through it in one piece.
That's when we're going to stop feeding Zachary. Not to punish him, but to get him to experience hunger and hopefully start eating baby food and other solids that he should be eating at his age. Right now, he just drinks formula from a bottle, and not even enough to grow sufficiently at that. So we have to give him the extra he passes on through his feeding tube, supplemented with other oils and calories.
This "tube weaning" as it's called is sure to be hell on everyone, especially him. The general plan is to start reducing the amount of formula he's given each day until after about a week, when he'll be denied the stuff entirely in hopes that he will eat solids because he is so hungry. So my guess is we're going to have a hungry, cranky, irritable, and sleep-deprived toddler on our hands after a couple days. (I get cranky when I miss a single meal so I can't imagine how it must feel to miss multiple ones).
Sounds simple enough, in theory. The big obstacle, at least in my mind, is that he generally chokes and barfs whenever any real food makes its way into his mouth. He usually panics and gags whenever this happens. He hasn't even had any solid food in his mouth for almost two month. So to say he's out of practice eating would be an understatement.
Not going to be easy for us either, watching our baby cry out in hunger and wonder why we are not helping him. We've been told by the therapists that parents are often too eager to pull the plug on the wean just before there's about to be a breakthrough. I can totally see that happening. There will undoubtedly be some tension between us and his therapists in this regard, so it will be a stressful time for everyone. But it will be worth it if it works.
Zachary needs to start gaining some weight. He's bounced between 16.5 and 17 pounds for the better part of two months. It could be worse, but it worries me that my almost 19-month old weighs so little, especially if he gets sick. We've been warned to expect that he'll lose weight during the wean, so we'll be seeing his pediatrician every couple days for weigh-ins and general health checks. We'll abort the wean if he loses more than 10 percent of his body weight.
So on this calm Sunday morning we're anticipating the coming storm; hoping it won't be as bad as we think and praying we'll all get through it in one piece.
Tuesday, May 1, 2012
We're almost there!
http://www.marchforbabies.org/personal_page.asp?pp=4157841&ct=4&w=5302475&u=zacharywhite
Team Zachary has almost reached its goal of raising $3,500 for the March of Dimes walk to stop prematurity and help families of preemies. We're just $135 short! Please help put us over the top by clicking on the link above and donating before May 12. Thanks so much!
Team Zachary has almost reached its goal of raising $3,500 for the March of Dimes walk to stop prematurity and help families of preemies. We're just $135 short! Please help put us over the top by clicking on the link above and donating before May 12. Thanks so much!
Monday, April 30, 2012
WALKING
That's right. Our little guy is walking. Not just taking a few steps; but full-blown meandering around the house whenever and wherever he wants. Things will never be the same.
It all happened rather quickly. He was taking a few unbalanced steps for his physical therapist last week, then after she left, he kept taking more and more until he realized he could do it on his own. He can even stand still and balance himself without moving.
Hard to believe this is the same kiddo who spent eight months in the hospital attached to so many machines that he couldn't even turn over without setting off several alarms and ripping tubes and wires from his arms and legs.
He even has his first real pair of shoes. He was specially-fitted last weekend with those little white baby shoes and some custom orthotics to help correct some over-pronation (inward slanting) of his feet when he walks. His PT thinks the problem will resolve itself in a matter of months.
Even though he has these fancy new kicks he still prefers to go shoeless, not surprisingly.
It all happened rather quickly. He was taking a few unbalanced steps for his physical therapist last week, then after she left, he kept taking more and more until he realized he could do it on his own. He can even stand still and balance himself without moving.
Hard to believe this is the same kiddo who spent eight months in the hospital attached to so many machines that he couldn't even turn over without setting off several alarms and ripping tubes and wires from his arms and legs.
He even has his first real pair of shoes. He was specially-fitted last weekend with those little white baby shoes and some custom orthotics to help correct some over-pronation (inward slanting) of his feet when he walks. His PT thinks the problem will resolve itself in a matter of months.
Even though he has these fancy new kicks he still prefers to go shoeless, not surprisingly.
Friday, April 20, 2012
every breath he takes
There hasn't been a single night in Zachary's 18 months that he hasn't been on a ventilator or been given supplemental oxygen to help him breath and heal from his scarred lungs. That could change soon, relatively speaking.
We got great news from the pulmonologist yesterday who told us we could stop giving Zachary the extra O2 he's been getting (which he only gets now when he sleeps) unless he needs it! So as long as the O2 saturation in his blood remains above 92% he won't need the extra oxygen.
That's good for a couple reasons. First, there are side effects to prolonged administration of O2 in children, such as reduced respiratory drive and dependence on the additional oxygen. Second, it is another obstacle that needs to be hurdled before we can stop putting Zachary on the ventilator at night, which if all goes well, could happen as soon as September.
Right now he gets about a 1/4 liter of flow when he sleeps on the vent. That equates to about 23 percent O2. (The air we breathe is about 21 percent O2, so you can see it's not too much). The extra boost has helped maintain his oxygen saturation above 92%, which studies have shown is really important for kids like Zachary with chronic lung disease and pulmonary hypertension. Our "sats" as those in the know refer to them are normally about 95% or higher.
Zachary has taken a couple naps since the new orders and has done well without the added O2. He kept his sats above 92 percent without any additional oxygen. When he slept last night though, he needed a little booster, probably because he was sleeping deeper and breathing more shallowly. He was able to maintain his sats with just 1/10th of a liter. Not bad for his first night if you ask me.
Oops, as I am typing his sats have dropped below 90% while he's napping. It went back up quickly though so I'm not giving him any O2 just yet. I know his sats because we have a pulse oximiter, which is a machine that allows us to continually monitor his O2 saturation and heart rate. There's an elastic band we put around his foot to which a probe is attached that shoots light through his foot that makes the reading. I like to measure my sats every now and then just to make sure I'm ok, but that's another story for another day.
The next big respiratory milestone will be a sleep study in mid June, which will help determine whether he can maintain his sats while sleeping off the vent without having the carbon dioxide in his blood rising too much and causing problems. If so, the vent weaning can begin. If not, no changes until a repeat sleep study in December. Keep your fingers crossed.
We got great news from the pulmonologist yesterday who told us we could stop giving Zachary the extra O2 he's been getting (which he only gets now when he sleeps) unless he needs it! So as long as the O2 saturation in his blood remains above 92% he won't need the extra oxygen.
That's good for a couple reasons. First, there are side effects to prolonged administration of O2 in children, such as reduced respiratory drive and dependence on the additional oxygen. Second, it is another obstacle that needs to be hurdled before we can stop putting Zachary on the ventilator at night, which if all goes well, could happen as soon as September.
Right now he gets about a 1/4 liter of flow when he sleeps on the vent. That equates to about 23 percent O2. (The air we breathe is about 21 percent O2, so you can see it's not too much). The extra boost has helped maintain his oxygen saturation above 92%, which studies have shown is really important for kids like Zachary with chronic lung disease and pulmonary hypertension. Our "sats" as those in the know refer to them are normally about 95% or higher.
Zachary has taken a couple naps since the new orders and has done well without the added O2. He kept his sats above 92 percent without any additional oxygen. When he slept last night though, he needed a little booster, probably because he was sleeping deeper and breathing more shallowly. He was able to maintain his sats with just 1/10th of a liter. Not bad for his first night if you ask me.
Oops, as I am typing his sats have dropped below 90% while he's napping. It went back up quickly though so I'm not giving him any O2 just yet. I know his sats because we have a pulse oximiter, which is a machine that allows us to continually monitor his O2 saturation and heart rate. There's an elastic band we put around his foot to which a probe is attached that shoots light through his foot that makes the reading. I like to measure my sats every now and then just to make sure I'm ok, but that's another story for another day.
The next big respiratory milestone will be a sleep study in mid June, which will help determine whether he can maintain his sats while sleeping off the vent without having the carbon dioxide in his blood rising too much and causing problems. If so, the vent weaning can begin. If not, no changes until a repeat sleep study in December. Keep your fingers crossed.
Saturday, April 14, 2012
Friday, April 13, 2012
TEAM ZACHARY UPDATE
http://www.marchforbabies.org/personal_page.asp?pp=4157841&ct=4&w=5302475&u=zacharywhite
It's crunch time!
Zachary's team in the March of Dimes March for Babies is in fourth place in fundraising for the walk, which takes place in just 29 days. Please help us reach our goal of raising $3,500 to help fund research to stop premature births and help families affected by this life-changing event.
If you are interested in walking with us, or donating to our effort, please click on the link above.
Thank you all for your help!
It's crunch time!
Zachary's team in the March of Dimes March for Babies is in fourth place in fundraising for the walk, which takes place in just 29 days. Please help us reach our goal of raising $3,500 to help fund research to stop premature births and help families affected by this life-changing event.
If you are interested in walking with us, or donating to our effort, please click on the link above.
Thank you all for your help!
Thursday, April 12, 2012
black and blue
It has been a rough week for both Zachary and Sammy.
First, late last week, Zachary grabbed the cat's ear and somehow separated the lining from the rest of the ear, causing it to fill with blood. Sammy went to the vet once to have his ear drained but the blood kept coming back, so he had to have surgery, where he got 20 stitches, to put everything back together. He's doing fine, though his ear will probably be floppy from now on. And I'm not sure he'll be as accommodating when Zachary tries to grab him in the future.
Here's the poor guy shortly after we got him back from the vet.
First, late last week, Zachary grabbed the cat's ear and somehow separated the lining from the rest of the ear, causing it to fill with blood. Sammy went to the vet once to have his ear drained but the blood kept coming back, so he had to have surgery, where he got 20 stitches, to put everything back together. He's doing fine, though his ear will probably be floppy from now on. And I'm not sure he'll be as accommodating when Zachary tries to grab him in the future.
Here's the poor guy shortly after we got him back from the vet.
Zachary had his own mishap earlier this week when he slipped on the stairs and cut his mouth near the gum line. We couldn't stop the bleeding so we had to take him to the ER, where it took them some time to get it under control. We were all covered in blood by the time we got to the hospital, though he was the calmest one among us. I guess after all he's gone through a little blood is no big deal.
Tuesday, April 10, 2012
Busy couple months ahead
There's a lot going to be happening over the next couple months on the medical front.
Tomorrow (well, today actually since it's 3:01 a.m.) we're visiting the surgeon who put in the trach to evaluate how things are going with that. The bleeding we saw a few months back has all but stopped, though we did get a trickle or two earlier today. Seems like whatever was causing it has abated. We've had a few issues with granulomas, or skin growths, around his stoma (the hole in his neck). But they don't seem to be causing too much discomfort.
Next week we're seeing the pulmonologist. We have good news to report in that Zachary has been weaned from supplemental oxygen when he's awake and wears his speaking valve without problem. He still gets O2 when he naps and overnight while he's on the ventilator. Next big event is a repeat sleep study in June to see if we can start lessening the time he's on the vent at night.
The following week it's off to the pediatrician for his 18-month checkup. Can you believe that? In some ways it seems like he was born just yesterday while in others it feels like he was born years ago. I think I've aged ten years in the past 18 months. Look like it too.
After that we'll be seeing his new cardiologist, who is monitoring his pulmonary hypertension. He wants to do an ultrasound of his neck because he thinks he may be at increased risk for blood clots based on some enlarged veins in his neck and chest. We'll keep you posted on that. And he'll do an echocardiogram of his heart to see if there's been any improvement with the PH and if he wants to put him on a regimen of, believe it or not, Viagra! The little blue pills help open blood vessels in the lungs, which lower pressures and results in less strain on the heart. I'll be sure to ask what to do about an erection lasting longer than four hours. I wonder if he'll think that's funny?
And starting in May, the dreaded tube wean. I'll do a separate post on that as it nears, but basically, we'll have some feeding and nutrition experts with us every day to help us try to stop feeding Z-man liquids through his stomach tube and instead feed him solely solids by mouth. From what we've heard it can be a traumatic experience for all involved, since the plan is not to give him his formula if he refuses to eat by mouth. The idea is that eventually he'll get hungry enough to eat whatever we give him. We'll see.
Not a lot of rest for the weary, but hopefully good news and continued improvement.
Tomorrow (well, today actually since it's 3:01 a.m.) we're visiting the surgeon who put in the trach to evaluate how things are going with that. The bleeding we saw a few months back has all but stopped, though we did get a trickle or two earlier today. Seems like whatever was causing it has abated. We've had a few issues with granulomas, or skin growths, around his stoma (the hole in his neck). But they don't seem to be causing too much discomfort.
Next week we're seeing the pulmonologist. We have good news to report in that Zachary has been weaned from supplemental oxygen when he's awake and wears his speaking valve without problem. He still gets O2 when he naps and overnight while he's on the ventilator. Next big event is a repeat sleep study in June to see if we can start lessening the time he's on the vent at night.
The following week it's off to the pediatrician for his 18-month checkup. Can you believe that? In some ways it seems like he was born just yesterday while in others it feels like he was born years ago. I think I've aged ten years in the past 18 months. Look like it too.
After that we'll be seeing his new cardiologist, who is monitoring his pulmonary hypertension. He wants to do an ultrasound of his neck because he thinks he may be at increased risk for blood clots based on some enlarged veins in his neck and chest. We'll keep you posted on that. And he'll do an echocardiogram of his heart to see if there's been any improvement with the PH and if he wants to put him on a regimen of, believe it or not, Viagra! The little blue pills help open blood vessels in the lungs, which lower pressures and results in less strain on the heart. I'll be sure to ask what to do about an erection lasting longer than four hours. I wonder if he'll think that's funny?
And starting in May, the dreaded tube wean. I'll do a separate post on that as it nears, but basically, we'll have some feeding and nutrition experts with us every day to help us try to stop feeding Z-man liquids through his stomach tube and instead feed him solely solids by mouth. From what we've heard it can be a traumatic experience for all involved, since the plan is not to give him his formula if he refuses to eat by mouth. The idea is that eventually he'll get hungry enough to eat whatever we give him. We'll see.
Not a lot of rest for the weary, but hopefully good news and continued improvement.
Monday, April 9, 2012
Zachary does the zoo
Zachary went to the zoo for the first time this past weekend. He was all dudded-up in his monkey jacket and yellow sun hat, as you can see here:
I think he was more interested in all the kids who were running around looking for Easter eggs than he was in the animals, though he did seem to take a special interest in the baby pigs:
The zoo was a smallish community type place where one can easily see all the animals in less than an hour, which is a good thing since Zachary was falling asleep after about 45 minutes. I think he enjoyed it, though perhaps not as much as mommy and daddy did having a more regular baby outing.
We're trying to get him out and about more often for longer periods because we have decided to drive to Florida in June for a family reunion. It will be a 15-plus hour drive so we are trying to get him accustomed to being in the van and seeing new people, places, and things so he's not so overwhelmed, though I am sure he will be regardless of our efforts.
We are also starting to think about how to pre-position medical equipment and supplies to ensure that we have what we need while we are there. Packing isn't as easy as it used to be when you have to take ventilators, oxygen canisters, suction machines, and all the other needed and just-in-case paraphernalia. (Our days of packing the night before to go to Europe or South America are most certainly over) As an extra precaution, we're also mapping hospitals along our route just in case something goes awry along the way.
So as the weather gets warmer we're looking for other places to go. Any ideas?
Thursday, March 22, 2012
Out to lunch
Zachary was out to lunch this week, literally.
He went out to eat at a restaurant near our house, the first such public trip. He seemed to have a good time, though unsurprisingly he didn't eat, not that we expected him to. He mostly watched cars pass by on the street. And he walked back and forth on the sidewalk in front of the restaurant, with our assistance of course!
He's not so much interested in scooting anymore. He's all about being up and mobile. He's cruising while holding onto furniture . . .
. . . and insisting that we help him practice his walking skills, which is back-breaking work since we have to bend down so far to hold his hands.
His physical therapist thinks he may go straight from scooting to walking without crawling at all. Doesn't really matter much to us, we're just happy he's so happy.
He went out to eat at a restaurant near our house, the first such public trip. He seemed to have a good time, though unsurprisingly he didn't eat, not that we expected him to. He mostly watched cars pass by on the street. And he walked back and forth on the sidewalk in front of the restaurant, with our assistance of course!
He's not so much interested in scooting anymore. He's all about being up and mobile. He's cruising while holding onto furniture . . .
. . . and insisting that we help him practice his walking skills, which is back-breaking work since we have to bend down so far to hold his hands.
His physical therapist thinks he may go straight from scooting to walking without crawling at all. Doesn't really matter much to us, we're just happy he's so happy.
Friday, March 16, 2012
Huffington Post: 7 things you don't know about a special needs parent
http://www.huffingtonpost.com/mobileweb/maria-lin/special-needs-parenting_b_1314348.html
Came across this article that shares some insights on being the parent of a child with special needs. I definitely feel like this sometimes.
Came across this article that shares some insights on being the parent of a child with special needs. I definitely feel like this sometimes.
Tuesday, March 13, 2012
Losing weight
Not me, unfortunately, but Zachary.
Got blindsided today when we found out that Zachary has lost weight over the past month, despite the high-calorie oral and tube formulas we have been feeding him. He weighed in at 16 pounds, 6 ounces, two ounces less than last month. His pediatrician thinks the backslide may be the result of him burning more calories breathing since he's getting less and less supplemental oxygen during the day or because he's become so much more active, or a combination of both.
The doctor is not the "sky is falling" kind of worried, but was definitely dismayed, as were we, that not only did he not gain weight during this crucial period for lung development but actually lost a little instead. So she's determined that the best way to beef him up quickly is to give him sunflower oil, and lots of it. We'll be giving him up to 25 teaspoons of the stuff each day, which will pile up the calories without requiring a higher volume of the dense formula he currently gets, which he'd probably just throw-up.
We'll see next month whether and/or how well this works. It does mean that hopes of beginning an aggressive weaning from the feeding tube will probably be pushed back some until he starts gaining weight more consistently.
If only I had this problem.
Got blindsided today when we found out that Zachary has lost weight over the past month, despite the high-calorie oral and tube formulas we have been feeding him. He weighed in at 16 pounds, 6 ounces, two ounces less than last month. His pediatrician thinks the backslide may be the result of him burning more calories breathing since he's getting less and less supplemental oxygen during the day or because he's become so much more active, or a combination of both.
The doctor is not the "sky is falling" kind of worried, but was definitely dismayed, as were we, that not only did he not gain weight during this crucial period for lung development but actually lost a little instead. So she's determined that the best way to beef him up quickly is to give him sunflower oil, and lots of it. We'll be giving him up to 25 teaspoons of the stuff each day, which will pile up the calories without requiring a higher volume of the dense formula he currently gets, which he'd probably just throw-up.
We'll see next month whether and/or how well this works. It does mean that hopes of beginning an aggressive weaning from the feeding tube will probably be pushed back some until he starts gaining weight more consistently.
If only I had this problem.
Sunday, March 11, 2012
Springing forward
I usually despise the day we move the clocks forward. There never seems to be a good time to lose an hours sleep. But this year I am a little less unhappy about it than normal because it means we are getting close to the end of RSV season.
RSV, or Respiratory Syncytial Virus, is a respiratory infection caused by germs transmitted in the air or on surfaces on which those who are infected come into contact. Most kids will have been infected by this virus by age 2 or 3, usually causing common cold-like symptoms in those who are healthy.
But it can be deadly for kids with respiratory insufficiency like Zachary. A child like him who gets RSV usually ends up in intensive care on a ventilator with higher than normal oxygen until resulting lung inflammation subsides. So parents of children with compromised respiratory systems are urged to avoid enclosed public places during RSV season, which runs from October to April.
This precaution normally means few public outings during the late fall and early winter since it is usually too cold to venture outdoors. Places like malls, restaurants, and places with other kids are to be avoided. Fortunately, we've had such a mild winter that we've been able to go on walks and get fresh air so we haven't been prisoners in our own home, as often happens with parents of preemies trying to avoid this dreaded bug.
Some who have chronic lung disease like our little guy also get a man-made antibody called Synagis, which inhibits the entry of the RSV protein into the cells, preventing the infection. So Zachary gets a shot of this stuff once a month for seven months, until RSV season is over. He's had this protocol administered each of his first two RSV seasons, and probably will the next one too. Zachary doesn't like the shot, which he gets in his thigh. And it is crazy expensive, like in the neighborhood of $3,000 to $4,000 per shot. Thank goodness for insurance!
So this year as we spring forward we're eagerly anticipating some family outings to places that have to this point been off limits. Makes the lost hour a bit more bearable. That and coffee.
RSV, or Respiratory Syncytial Virus, is a respiratory infection caused by germs transmitted in the air or on surfaces on which those who are infected come into contact. Most kids will have been infected by this virus by age 2 or 3, usually causing common cold-like symptoms in those who are healthy.
But it can be deadly for kids with respiratory insufficiency like Zachary. A child like him who gets RSV usually ends up in intensive care on a ventilator with higher than normal oxygen until resulting lung inflammation subsides. So parents of children with compromised respiratory systems are urged to avoid enclosed public places during RSV season, which runs from October to April.
This precaution normally means few public outings during the late fall and early winter since it is usually too cold to venture outdoors. Places like malls, restaurants, and places with other kids are to be avoided. Fortunately, we've had such a mild winter that we've been able to go on walks and get fresh air so we haven't been prisoners in our own home, as often happens with parents of preemies trying to avoid this dreaded bug.
Some who have chronic lung disease like our little guy also get a man-made antibody called Synagis, which inhibits the entry of the RSV protein into the cells, preventing the infection. So Zachary gets a shot of this stuff once a month for seven months, until RSV season is over. He's had this protocol administered each of his first two RSV seasons, and probably will the next one too. Zachary doesn't like the shot, which he gets in his thigh. And it is crazy expensive, like in the neighborhood of $3,000 to $4,000 per shot. Thank goodness for insurance!
So this year as we spring forward we're eagerly anticipating some family outings to places that have to this point been off limits. Makes the lost hour a bit more bearable. That and coffee.
Wednesday, March 7, 2012
What keeps me up at night
I used to stay up at night when I was a kid, like in third or fourth grade, and worry about nuclear war. I was certain someone was going to accidentally hit the big red button that launched the nukes that destroyed the world. (Fortunately, we practiced hiding under our desks at school so we'd be safe if that happened).
Strange what keeps one up at night.
Today, I don't worry about that so much, though maybe I should given Iran's nuclear ambitions. Instead, I worry about whether Zachary's care team would be prepared for an emergency of the worst kind: a compromised airway. The answer scares the hell out of me.
I have become increasingly worried that everyone, us included, have become too complacent about his care because he is doing so well. Our sense of being "on edge" so to speak has waned in the months he's been home. We've had a few mucous plugs (sticky secretions from the lungs that block the tube through which he breathes) but we managed to dislodge them without too much difficulty.
But danger is just around the corner as long as he has a trach. That's not just my opinion. The American Thoracic Society official statement about the care of kids with tracheostomies warns that these children "are at risk for potentially devastating airway compromise." At any time. Day or night. Whether you are ready or not.
Earlier today I made the mistake of reading an article about decreasing the accidental mortality of ventilator-dependent children at home. It confirmed my worst fears: that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response, and a lack of vigilance by caregivers.
The paper provided a shocking statistic that a study of 950 vent-dependent kids at home found that the accidental death rate was 27.5 percent, the same as it was two decades ago. I remember one of Zachary's NICU doctors telling us that one of the main reasons not to trach him was the risk of accidental death. We understood that there are risks but ARE YOU KIDDING ME?
We got trained up on dealing with airway emergencies at the hospital. Learned CPR for kids with trachs. Learned how to bag him (give manual breaths with a hand-held bag). Learned how to do emergency trach changes. But practicing using dolls with no consequences is one thing. I wonder how we'd react with it all on the line? Or how someone else caring for him would.
That's what keeps me up at night.
Strange what keeps one up at night.
Today, I don't worry about that so much, though maybe I should given Iran's nuclear ambitions. Instead, I worry about whether Zachary's care team would be prepared for an emergency of the worst kind: a compromised airway. The answer scares the hell out of me.
I have become increasingly worried that everyone, us included, have become too complacent about his care because he is doing so well. Our sense of being "on edge" so to speak has waned in the months he's been home. We've had a few mucous plugs (sticky secretions from the lungs that block the tube through which he breathes) but we managed to dislodge them without too much difficulty.
But danger is just around the corner as long as he has a trach. That's not just my opinion. The American Thoracic Society official statement about the care of kids with tracheostomies warns that these children "are at risk for potentially devastating airway compromise." At any time. Day or night. Whether you are ready or not.
Earlier today I made the mistake of reading an article about decreasing the accidental mortality of ventilator-dependent children at home. It confirmed my worst fears: that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response, and a lack of vigilance by caregivers.
The paper provided a shocking statistic that a study of 950 vent-dependent kids at home found that the accidental death rate was 27.5 percent, the same as it was two decades ago. I remember one of Zachary's NICU doctors telling us that one of the main reasons not to trach him was the risk of accidental death. We understood that there are risks but ARE YOU KIDDING ME?
We got trained up on dealing with airway emergencies at the hospital. Learned CPR for kids with trachs. Learned how to bag him (give manual breaths with a hand-held bag). Learned how to do emergency trach changes. But practicing using dolls with no consequences is one thing. I wonder how we'd react with it all on the line? Or how someone else caring for him would.
That's what keeps me up at night.
Friday, March 2, 2012
Headed in the right direction
There have been some major changes in the White House over the past couple weeks.
The biggest news is that we have stopped Zachary's continuous overnight feedings. Now, instead of giving him 42ml of tube feeding formula hourly during the night, we're giving it to him during the daytime, in addition to what he had been getting during the day. Might not sound like such a big deal, but it is a major step toward reestablishing his hunger cycles and eventually jettisoning the feeding tube, though that's probably still a ways away.
So now he gets five "meals" everyday. The sittings start with a couple tablespoons of pureed baby food or yogurt, and maybe a cookie or veggie stick, which he licks, followed by a bottle of Pediasure, which we don't like so much because it consists primarily of sugar and water. Then, we subtract whatever remains of the bottle from his total fluid goal for each feeding and give him the remainder though his tube. We're hoping that this will make him hungrier and more likely to eat more solid food by mouth so we can have the feeding tube removed sooner rather than later.
We also had to part ways with our primary night nurse, who was working five nights per week. The details aren't so much important; we just had grown increasingly uncomfortable with some things she had been doing. We've decided not to fill her shifts for now, so we'll take turns staying up overnight to monitor Zachary. Might be more physically challenging for us with less sleep but in the long run we think it will be much better for us mentally. And we'll still have a nurse here on Friday and Saturday nights from 11:00 p.m. to 7:00 a.m. the following morning.
Our little guy also has developed separation anxiety in a big way. He starts wailing and the waterworks come quick if we leave the room just for a moment, or even if we turn our heads and aren't paying as much attention to him as he thinks we should. Seems like normal baby behavior but it is sad to see him get so upset.
These steps are taking us toward a more normal existence, whatever that means. But the important thing is that we're headed in the right direction.
The biggest news is that we have stopped Zachary's continuous overnight feedings. Now, instead of giving him 42ml of tube feeding formula hourly during the night, we're giving it to him during the daytime, in addition to what he had been getting during the day. Might not sound like such a big deal, but it is a major step toward reestablishing his hunger cycles and eventually jettisoning the feeding tube, though that's probably still a ways away.
So now he gets five "meals" everyday. The sittings start with a couple tablespoons of pureed baby food or yogurt, and maybe a cookie or veggie stick, which he licks, followed by a bottle of Pediasure, which we don't like so much because it consists primarily of sugar and water. Then, we subtract whatever remains of the bottle from his total fluid goal for each feeding and give him the remainder though his tube. We're hoping that this will make him hungrier and more likely to eat more solid food by mouth so we can have the feeding tube removed sooner rather than later.
We also had to part ways with our primary night nurse, who was working five nights per week. The details aren't so much important; we just had grown increasingly uncomfortable with some things she had been doing. We've decided not to fill her shifts for now, so we'll take turns staying up overnight to monitor Zachary. Might be more physically challenging for us with less sleep but in the long run we think it will be much better for us mentally. And we'll still have a nurse here on Friday and Saturday nights from 11:00 p.m. to 7:00 a.m. the following morning.
Our little guy also has developed separation anxiety in a big way. He starts wailing and the waterworks come quick if we leave the room just for a moment, or even if we turn our heads and aren't paying as much attention to him as he thinks we should. Seems like normal baby behavior but it is sad to see him get so upset.
These steps are taking us toward a more normal existence, whatever that means. But the important thing is that we're headed in the right direction.
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