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.
Sunday, October 28, 2012
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.
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