More than you need to know
I've been asked to review what's going on with Ira specifically. Below is a way over-simplified explanation of where Ira stands.
LUNGS
Because of the hernia, Ira's lungs - specifically his left lung - didn't grow as they should. So Ira, since Day One, has had help breathing. Currently, he's on CPAP at night which not only gives him oxygen but gives a boost of pressure that helps expand his lungs. He's on the cannula during the day which just gives him oxygen. The CPAP is not portable and the cannula is. Who knows how long he'll be on these devices? The doctors don't know and we don't either. Could be months. Could be years.
HEART
Because Ira's lungs are not what they should be, Ira's heart has worked extra hard to keep the flow of blood going. He's on Viagra to keep the pressure (pulmonary hypertension) normal and keep the heart from working itself to death, literally.
STOMACH
It's incredibly common for CDH babies to deal with reflux. When they straightened everything out in Ira - put his stomach, intestines, etc. where they should be - he began eating. But because his body is not used to having everything in the right place, the food comes back up. Ira's digestive system is fragile to say the least. He throws up often. He takes Prevacid to help keep this in check but it only does so much. He is fed through his G-tube. His meds are administered through his G-tube. Ira won't take anything via the mouth.
PHYSICAL DEVELOPMENT
Ira needs to grow. The more he grows the more room his lungs have to grow. The pictures of Ira might fool you. He looks chunky only because his head is the size of two basketballs. He's actually quite thin otherwise. Because he can't keep food down, he will have a hard time growing. It's quite common for CDH kids to have stunted growth. He has low muscle tone and will be last among his peers to crawl, walk, run, etc.
Ira gets five different kinds of medicines that are administered several times a day. He is continuously fed at night (from 8 PM - 8 a.m.) and at three different times a day (11 a.m., 2 PM, 5 PM) for an hour and a half at a time. So there's only five and a half hours of Ira's day when he is not being fed. No wonder the boy throws up! Kidding, the doses are small.
FOLLOW-UP
Ira sees his pediatrician who handles all the info from the other docs. He is also seen by a gastrointestinal doctor, pulmonologist, pulmonary hypertension doctor, and his surgeon. He'll have physical and occupational therapy along with therapy that deals with eating.
We've had Ira home for five days now. I've been asked how it is to have him home. It's hard to answer that question. I'm so glad he is alive and well enough to be home that I love having him home. But I would be lying if I said it was a cakewalk. Ira is a hard baby. He keeps us working, that's for sure.
LUNGS
Because of the hernia, Ira's lungs - specifically his left lung - didn't grow as they should. So Ira, since Day One, has had help breathing. Currently, he's on CPAP at night which not only gives him oxygen but gives a boost of pressure that helps expand his lungs. He's on the cannula during the day which just gives him oxygen. The CPAP is not portable and the cannula is. Who knows how long he'll be on these devices? The doctors don't know and we don't either. Could be months. Could be years.
HEART
Because Ira's lungs are not what they should be, Ira's heart has worked extra hard to keep the flow of blood going. He's on Viagra to keep the pressure (pulmonary hypertension) normal and keep the heart from working itself to death, literally.
STOMACH
It's incredibly common for CDH babies to deal with reflux. When they straightened everything out in Ira - put his stomach, intestines, etc. where they should be - he began eating. But because his body is not used to having everything in the right place, the food comes back up. Ira's digestive system is fragile to say the least. He throws up often. He takes Prevacid to help keep this in check but it only does so much. He is fed through his G-tube. His meds are administered through his G-tube. Ira won't take anything via the mouth.
PHYSICAL DEVELOPMENT
Ira needs to grow. The more he grows the more room his lungs have to grow. The pictures of Ira might fool you. He looks chunky only because his head is the size of two basketballs. He's actually quite thin otherwise. Because he can't keep food down, he will have a hard time growing. It's quite common for CDH kids to have stunted growth. He has low muscle tone and will be last among his peers to crawl, walk, run, etc.
Ira gets five different kinds of medicines that are administered several times a day. He is continuously fed at night (from 8 PM - 8 a.m.) and at three different times a day (11 a.m., 2 PM, 5 PM) for an hour and a half at a time. So there's only five and a half hours of Ira's day when he is not being fed. No wonder the boy throws up! Kidding, the doses are small.
FOLLOW-UP
Ira sees his pediatrician who handles all the info from the other docs. He is also seen by a gastrointestinal doctor, pulmonologist, pulmonary hypertension doctor, and his surgeon. He'll have physical and occupational therapy along with therapy that deals with eating.
We've had Ira home for five days now. I've been asked how it is to have him home. It's hard to answer that question. I'm so glad he is alive and well enough to be home that I love having him home. But I would be lying if I said it was a cakewalk. Ira is a hard baby. He keeps us working, that's for sure.
posted by jch at
7:47 PM
0 Comments:
Post a Comment
Subscribe to Post Comments [Atom]
<< Home