http://www.feedingtubeawareness.org/for-friends-family.html
The Feeding Tube Awareness Foundation has a great section on their web page with questions and answers for family and friends of people whose kids are "tubies." Check it out if you're interested.
Saturday, January 28, 2012
Friday, January 27, 2012
And so it goes
So much for having a quiet and uneventful week . . .
Zachary started bleeding from his trach a few days ago. Just a few pinkish streaks at first. Eventually turned into a bright red flow shooting from the trach. So much so that it clogged the suction tubing. We didn't go to the emergency room, partly because we're scared to death he's going to get sick at the hospital and partly because it didn't seem that serious. Funny how blood shooting out the hole in his neck doesn't seem so serious. Well, maybe not funny, but you know, serious has become a relative term.
His ENT surgeon at Children's, who is fantastic, found that he has a granuloma, or clump of scarred skin, that is partially blocking his airway and causing the bleeding. He has ordered a different type of trach that he thinks may not cause as much irritation in his trachea, which leads to these tissue build-ups. He was hoping this would solve the problem but the past couple days we've been getting think clumps of sticky blood from his trach, which can clog his breathing tube and cause real bad problems. He said he may have him come in this coming Wednesday to fix the problem surgically.
We also saw the cardiologist today. We were a bit surprised that Zachary's pulmonary hypertension hasn't gotten any better over the past six months. Basically, because of his prematurity, the blood vessels in his lungs are somewhat messed up and malformed, leading to fewer passages for the blood to flow past the air sacs in his lungs to exchange carbon dioxide for oxygen. Since there are fewer routes for the blood to go, the pressure is higher than it should be and his heart, specifically the right ventricle, has to work harder to pump the blood along its way and properly oxygenate this blood.
The concern is that the cumulative effect of this increased workload on the heart causes the right ventricle to enlarge and eventually stop working. The doctor categorized Zachary's PH as mild to moderate, but thinks it is worth monitoring more closely by someone specializing in PH. So he referred us to another cardiologist who he said is one of the foremost PH experts on the East Coast. And lucky for us, he's also at CNMC.
The news about the PH kinda jolted us as we just assumed (which clearly is something you can't do with a preemie with such a myriad of complex medical conditions) that the PH would have improved over the past months. But the good news, as with his other diagnoses, is that the docs think the problem will get better, or with the PH specifically, at least will not get worse over time. So here's hoping.
Also had our kitchen floor tiles ripped out today because they were cracking. What a mess. The workers are coming back on Monday to put in the new tile. So the house is a disaster area, even more so than normal. But the weather has been nice. So one week ends and another awaits.
And so it goes.
Zachary started bleeding from his trach a few days ago. Just a few pinkish streaks at first. Eventually turned into a bright red flow shooting from the trach. So much so that it clogged the suction tubing. We didn't go to the emergency room, partly because we're scared to death he's going to get sick at the hospital and partly because it didn't seem that serious. Funny how blood shooting out the hole in his neck doesn't seem so serious. Well, maybe not funny, but you know, serious has become a relative term.
His ENT surgeon at Children's, who is fantastic, found that he has a granuloma, or clump of scarred skin, that is partially blocking his airway and causing the bleeding. He has ordered a different type of trach that he thinks may not cause as much irritation in his trachea, which leads to these tissue build-ups. He was hoping this would solve the problem but the past couple days we've been getting think clumps of sticky blood from his trach, which can clog his breathing tube and cause real bad problems. He said he may have him come in this coming Wednesday to fix the problem surgically.
We also saw the cardiologist today. We were a bit surprised that Zachary's pulmonary hypertension hasn't gotten any better over the past six months. Basically, because of his prematurity, the blood vessels in his lungs are somewhat messed up and malformed, leading to fewer passages for the blood to flow past the air sacs in his lungs to exchange carbon dioxide for oxygen. Since there are fewer routes for the blood to go, the pressure is higher than it should be and his heart, specifically the right ventricle, has to work harder to pump the blood along its way and properly oxygenate this blood.
The concern is that the cumulative effect of this increased workload on the heart causes the right ventricle to enlarge and eventually stop working. The doctor categorized Zachary's PH as mild to moderate, but thinks it is worth monitoring more closely by someone specializing in PH. So he referred us to another cardiologist who he said is one of the foremost PH experts on the East Coast. And lucky for us, he's also at CNMC.
The news about the PH kinda jolted us as we just assumed (which clearly is something you can't do with a preemie with such a myriad of complex medical conditions) that the PH would have improved over the past months. But the good news, as with his other diagnoses, is that the docs think the problem will get better, or with the PH specifically, at least will not get worse over time. So here's hoping.
Also had our kitchen floor tiles ripped out today because they were cracking. What a mess. The workers are coming back on Monday to put in the new tile. So the house is a disaster area, even more so than normal. But the weather has been nice. So one week ends and another awaits.
And so it goes.
Thursday, January 26, 2012
The New Yorker: Premature Babies, Neonatal Research, and Difficult Choices
http://www.newyorker.com/reporting/2011/10/24/111024fa_fact_groopman?currentPage=all
Interesting piece from the New Yorker about premature babies and the issues surrounding their care.
Interesting piece from the New Yorker about premature babies and the issues surrounding their care.
Friday, January 20, 2012
Tiny baby headed home
http://hosted.ap.org/dynamic/stories/U/US_MED_TINY_BABY?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT&CTIME=2012-01-20-07-12-56
Check out this article from the Associated Press. A preemie baby born at 9.5 ounces (just slightly over 1/2 a pound) is headed home. To put her size into perspective, Zachary was 1 pound, 9 ounces at birth, about three times her size.
Check out this article from the Associated Press. A preemie baby born at 9.5 ounces (just slightly over 1/2 a pound) is headed home. To put her size into perspective, Zachary was 1 pound, 9 ounces at birth, about three times her size.
Thursday, January 19, 2012
A few more things
The new formula has arrived! Not sure why I am so excited about this, but I am. It is called Compleat Pediatric, and as you can see, Nestle is proud to note that it is made "with real food ingredients," which not all formulas are. The dietitian we saw a few weeks back was excited about this too, since we made clear our desire to avoid feeding him a non-food product. This stuff all goes in his tube, so mealtimes won't be all that much fun. But we''ll try to give him some real baby food by mouth first to make it seem more natural and hopefully avoid having a toddler who only "eats" by tube.
And speaking of eating, we found out that this week that Zachary weighs 15 pounds, 9 ounces. He's gained back what he had lost over the past few weeks and at the pace he's on now will hit the growth chart at 21 months. He'll be in the 0 percentile for weight, but hey, at least we'll finally be able to plot his dot on the graph.
We're also learning sign language. Zachary knows how to sign the word for "more," which is touching your hands together in front of your chest. He definitely makes clear what he wants, and often, what he doesn't. He almost always wants to read more books. He almost never wants more food. I think we're getting close to teaching him the sign for finished, or all done, and cat.
And Sammy, our cat, went to the vet last week and was pronounced overweight by about 3 pounds. He clocked in at 17.2 pounds, still more than Zachary, though Z-man will hopefully catch him soon. He wants nothing more than to give the cat a big hug, and occasionally gets a handful of ear or whiskers. Sammy dutifully lets him do it, albeit briefly.
Finally, no more doctor's appointments this week! Going to the cardiologist next week though. Sure I'll have more to share then.
Could be better; could be worse
We had our big appointment with the pulmonologist today to discuss the results of the sleep study that was done in December.
The verdict: could be better; could be worse.
The good news is that all the doctors agree that it is more likely than not that Zachary will eventually outgrow his breathing problems and eventually rid himself of the ventilator, get his trach removed, and not need supplemental oxygen.
Whew!
The bad news is that it could take a long, long time, at least much longer than we had hoped.
The next step is another sleep study in June, which hopefully will yield better results. If it does, a long and drawn out process called decannulation will begin. That's just a fancy word for taking the trach out of his throat and making him breathe through his nose and mouth. (So it looks like the earliest he could be free from the trach would be sometime next year, probably during the summer).
If the sleep study in June goes poorly, we'd simply wait and do another one in December. I don't even want to think about what would happen if that one was bad. Basically, the longer he needs the ventilator and supplemental oxygen the worse his lungs really are and the higher the chances are that he might need such respiratory support for years.
We also learned that he's doing something called paradoxical breathing, in which his chest wall moves in when he inhales and out when he exhales, just the opposite of what's supposed to happen. The doctor said it could be a sign of an airway obstruction that might need surgical correction prior to decannulation. But that's way far down the road.
So we're in for more of the same but still optimistic that our guy will one day be untethered from all his medical accoutrements.
The verdict: could be better; could be worse.
The good news is that all the doctors agree that it is more likely than not that Zachary will eventually outgrow his breathing problems and eventually rid himself of the ventilator, get his trach removed, and not need supplemental oxygen.
Whew!
The bad news is that it could take a long, long time, at least much longer than we had hoped.
The next step is another sleep study in June, which hopefully will yield better results. If it does, a long and drawn out process called decannulation will begin. That's just a fancy word for taking the trach out of his throat and making him breathe through his nose and mouth. (So it looks like the earliest he could be free from the trach would be sometime next year, probably during the summer).
If the sleep study in June goes poorly, we'd simply wait and do another one in December. I don't even want to think about what would happen if that one was bad. Basically, the longer he needs the ventilator and supplemental oxygen the worse his lungs really are and the higher the chances are that he might need such respiratory support for years.
We also learned that he's doing something called paradoxical breathing, in which his chest wall moves in when he inhales and out when he exhales, just the opposite of what's supposed to happen. The doctor said it could be a sign of an airway obstruction that might need surgical correction prior to decannulation. But that's way far down the road.
So we're in for more of the same but still optimistic that our guy will one day be untethered from all his medical accoutrements.
Tuesday, January 10, 2012
Are you kidding me?
I've read some media reports that Jay Z and Beyonce had an entire floor of the hospital in which their ridiculously named baby was recently born blocked off to protect their privacy. The stories said parents who had babies in the NICU were unable to get in for several hours.
Seriously? What a couple of ASSHOLES.
I would write a long rant about how out-of-touch these clowns are and how hurtful their actions were to parents who were unable to be with their seriously ill children just so a couple of pampered divas could indulge themselves.
But I don't have to. Someone else with a blog called People I Want to Punch in the Throat already did. The blogger, a former NICU parent, wrote an open letter to these jerks that says it all.
Read it here: http://www.peopleiwanttopunchinthethroat.com/2012/01/open-letter-to-beyonce-jay-z.html
Seriously? What a couple of ASSHOLES.
I would write a long rant about how out-of-touch these clowns are and how hurtful their actions were to parents who were unable to be with their seriously ill children just so a couple of pampered divas could indulge themselves.
But I don't have to. Someone else with a blog called People I Want to Punch in the Throat already did. The blogger, a former NICU parent, wrote an open letter to these jerks that says it all.
Read it here: http://www.peopleiwanttopunchinthethroat.com/2012/01/open-letter-to-beyonce-jay-z.html
Saturday, January 7, 2012
What's for lunch?
I don't think too much about eating. Just eat something I like when I'm hungry. Doesn't work that way with my son, though. He doesn't really eat, at least not in the traditional sense. Eating, or not eating in his case, takes up a lot of our time and energy.
When I say he doesn't eat, that's not to say we don't feed him. He just won't drink his bottles of fortified breast milk or eat the baby food, yogurt, or assorted baby crackers and cookies we give him. So we have to feed him through his tube. The tube, or button as it is called, goes directly into his stomach and is held in place by a little balloon filled with water. And oh yeah, he can pull it out. So we have to put it back in so his stomach contents don't come flowing out the hole in his abdomen, which has happened a couple times.
Here's the button:
Here's a feeding being poured into his stomach:
We're not entirely sure why he won't eat. Our theory is that for months and months he had to work so hard to breathe that he was too tired. Now, he can breathe easier, but he has to get so many calories to grow (because he burns so many breathing) that his stomach is nearly always full and he never really feels hungry. He needs so many calories that we feed him continually with a pump overnight for six hours straight.
But despite all the food, he's growing very slowly. He gains about 13 grams per day. The doctors would like him to gain twice that. He's so small for his age that you can't plot his growth on a growth chart because he isn't even on the chart. The past couple weeks he's actually lost a few ounces. (See previous post for details).
Growth is so important for him right now because he needs to grow healthy lung tissue to compensate for all the tissue that was forever destroyed by the high pressure ventilator he was on for so long. He needs the percentage of healthy lungs to far outpace the percentage of damaged lungs. And that happens by growing. The lung experts have told he has a several year window in which the greatest growth will take place. So if he gets sick or has feeding issues that impede that progress, he's losing valuable time that could have a lifelong impact on his respiratory capacity.
So, since he won't eat or drink, we pretty much feed him exclusively through his tube. Right now it is still breast milk fortified with extra calories and nutrients. We soon will be switching to a more vitamin-rich formula called Compleat that's made from real food. But the doctors want us to use this stuff called Pediasure, but we are uneasy giving him something with so much sugar and so many additives and preservatives.
We've instead been thinking of doing what's called a blenderized diet, or BD, for short. This would mean that we'd put meats, vegetables, fruits, vitamins, minerals, and oils in a blender to create a sort of milkshake that we'd feed him through his tube. It will be a lot of work; we'd need to find the right ratio of protein, carbs, fats, and other stuff to make sure his diet is nutritionally-balanced. But we think it would be better for him than something that is made from chemicals in a lab. And we've heard from other preemie parents that a more natural diet such as this can help reduce vomiting and reflux, which has been an ongoing problem we've been trying to address.
The doctors, at least the ones we've seen so far, aren't in favor of a BD. They claim we should give him the artificial formula because of the consistency of the calories and the surety that he'll be getting the necessary vitamins and minerals. We think they just don't trust most parents to put in the time necessary to ensure a healthy BD that will allow their kids to grow and thrive. They clearly don't know us well enough. So we are going to get a second opinion from a nutritionist who is open to the idea.
But for now we'll keep doing what we're doing and working on getting our little guy to explore the wonderful world of food.
When I say he doesn't eat, that's not to say we don't feed him. He just won't drink his bottles of fortified breast milk or eat the baby food, yogurt, or assorted baby crackers and cookies we give him. So we have to feed him through his tube. The tube, or button as it is called, goes directly into his stomach and is held in place by a little balloon filled with water. And oh yeah, he can pull it out. So we have to put it back in so his stomach contents don't come flowing out the hole in his abdomen, which has happened a couple times.
Here's the button:
Here's a feeding being poured into his stomach:
We're not entirely sure why he won't eat. Our theory is that for months and months he had to work so hard to breathe that he was too tired. Now, he can breathe easier, but he has to get so many calories to grow (because he burns so many breathing) that his stomach is nearly always full and he never really feels hungry. He needs so many calories that we feed him continually with a pump overnight for six hours straight.
But despite all the food, he's growing very slowly. He gains about 13 grams per day. The doctors would like him to gain twice that. He's so small for his age that you can't plot his growth on a growth chart because he isn't even on the chart. The past couple weeks he's actually lost a few ounces. (See previous post for details).
Growth is so important for him right now because he needs to grow healthy lung tissue to compensate for all the tissue that was forever destroyed by the high pressure ventilator he was on for so long. He needs the percentage of healthy lungs to far outpace the percentage of damaged lungs. And that happens by growing. The lung experts have told he has a several year window in which the greatest growth will take place. So if he gets sick or has feeding issues that impede that progress, he's losing valuable time that could have a lifelong impact on his respiratory capacity.
So, since he won't eat or drink, we pretty much feed him exclusively through his tube. Right now it is still breast milk fortified with extra calories and nutrients. We soon will be switching to a more vitamin-rich formula called Compleat that's made from real food. But the doctors want us to use this stuff called Pediasure, but we are uneasy giving him something with so much sugar and so many additives and preservatives.
We've instead been thinking of doing what's called a blenderized diet, or BD, for short. This would mean that we'd put meats, vegetables, fruits, vitamins, minerals, and oils in a blender to create a sort of milkshake that we'd feed him through his tube. It will be a lot of work; we'd need to find the right ratio of protein, carbs, fats, and other stuff to make sure his diet is nutritionally-balanced. But we think it would be better for him than something that is made from chemicals in a lab. And we've heard from other preemie parents that a more natural diet such as this can help reduce vomiting and reflux, which has been an ongoing problem we've been trying to address.
The doctors, at least the ones we've seen so far, aren't in favor of a BD. They claim we should give him the artificial formula because of the consistency of the calories and the surety that he'll be getting the necessary vitamins and minerals. We think they just don't trust most parents to put in the time necessary to ensure a healthy BD that will allow their kids to grow and thrive. They clearly don't know us well enough. So we are going to get a second opinion from a nutritionist who is open to the idea.
But for now we'll keep doing what we're doing and working on getting our little guy to explore the wonderful world of food.
Friday, January 6, 2012
A new post . . . finally.
My apologies to any regular readers out there. It has been a while since I last posted, partly because the holidays were so busy and partly because I've been crashing whenever I've had any precious downtime.
Zachary had a great second Christmas with his aunt, uncle, and two cousins. He got more presents than he knows what to do with and loved all the attention he received. We were so lucky to have my brother, sister-in-law, and niece and nephew in town to help out with cooking and cleaning and keep us company. Don't know what we'd do without them or all our other family and friends who have been so helpful for so long.
The biggest news the past month was that Zachary didn't do so well during his sleep study at the end of December. The test was to see whether his lungs are strong enough to do the job while he's sleeping without assistance from a ventilator. Unfortunately, when he went into deep sleep the carbon dioxide in his blood rose to unacceptable levels so he had to be put back on the vent to help keep his lungs inflated and blow off the C02. We have an appointment with his pulmonologist in a couple weeks to learn for sure what it all means. But it likely means that he's going to need to keep using the vent at night longer than we'd like and will probably not have his trach removed as soon as we'd hoped.
He also lost a little weight over the past couple weeks. Nothing to be too alarmed about. But when you are almost 15 months old and weigh less than 15 pounds you have to be vigilant about the calories in and calories out. We think it is because we started transitioning him off breast milk and onto a formula recommended by a GI specialist. Had an appointment with a nutritionist yesterday and working on a plan forward as far as that goes.
We are frustrated that his eating is going VERY slowly, as in he doesn't really eat at all. He drinks about 1/3 of his bottles but could care less for solid food, though he'll tolerate small tastes of yogurt and pureed pears and such. Will probably do a more detailed post on the feeding issues soon since that is what consumes most of our time and attention.
Good news is that we have weaned him off one of the meds he was taking for motility problems and are about to get rid of another for reflux. Not because he doesn't still have those problems but because we figured they weren't really helping all that much. Figured it was better to projectile vomit and have slow stomach emptying without all the meds than have them with all the meds.
That's all for now. Will follow-up with a more detailed look at his feeding/growth issues soon.
Zachary had a great second Christmas with his aunt, uncle, and two cousins. He got more presents than he knows what to do with and loved all the attention he received. We were so lucky to have my brother, sister-in-law, and niece and nephew in town to help out with cooking and cleaning and keep us company. Don't know what we'd do without them or all our other family and friends who have been so helpful for so long.
The biggest news the past month was that Zachary didn't do so well during his sleep study at the end of December. The test was to see whether his lungs are strong enough to do the job while he's sleeping without assistance from a ventilator. Unfortunately, when he went into deep sleep the carbon dioxide in his blood rose to unacceptable levels so he had to be put back on the vent to help keep his lungs inflated and blow off the C02. We have an appointment with his pulmonologist in a couple weeks to learn for sure what it all means. But it likely means that he's going to need to keep using the vent at night longer than we'd like and will probably not have his trach removed as soon as we'd hoped.
He also lost a little weight over the past couple weeks. Nothing to be too alarmed about. But when you are almost 15 months old and weigh less than 15 pounds you have to be vigilant about the calories in and calories out. We think it is because we started transitioning him off breast milk and onto a formula recommended by a GI specialist. Had an appointment with a nutritionist yesterday and working on a plan forward as far as that goes.
We are frustrated that his eating is going VERY slowly, as in he doesn't really eat at all. He drinks about 1/3 of his bottles but could care less for solid food, though he'll tolerate small tastes of yogurt and pureed pears and such. Will probably do a more detailed post on the feeding issues soon since that is what consumes most of our time and attention.
Good news is that we have weaned him off one of the meds he was taking for motility problems and are about to get rid of another for reflux. Not because he doesn't still have those problems but because we figured they weren't really helping all that much. Figured it was better to projectile vomit and have slow stomach emptying without all the meds than have them with all the meds.
That's all for now. Will follow-up with a more detailed look at his feeding/growth issues soon.
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