Yesterday afternoon, we were able to take Lizard Loaf home from the hospital. Out of all the possible outcomes he could have faced, this was probably the best. It turns out that he is aspirating liquid into his lungs when he eats, which explains the fluid in the lungs, which explains his low oxygen levels, which might explain his body temperature drop and his other problems. He's still on oxygen for now, but we hope that by adjusting his food (thickening it so he doesn't aspirate it), we can resolve the aspiration problem. Now if we can just get the existing fluid out of his lungs. . .
For now, it's good news, and we are happy that our boy can be at home with us, instead of at the hospital hooked up to monitors. More as things progress!
Showing posts with label lizard loaf. Show all posts
Showing posts with label lizard loaf. Show all posts
Lizard Loaf Update 2
Today was a very busy day, and I think I should post some kind of update. Lizard Loaf now has his own team of doctors to look after him. Today he was seen by an ENT, several cardiologists, a pulmonary specialist, and his primary care pediatrician. I'm not sure if there were more, since I had to go to work today and make sure that I got a few things done. I might not have listed them all. We're at a teaching hospital, so each doctor has his own team of interns, residents, and med students as well, so I'm confident that everything possible is being done for our boy. Here's the long and short of it.
There are two distinct issues that they are trying to assess: 1) Lizard Loaf is exhibiting signs of hypothyroidism, which if left untreated can lead to a significant increase in mental retardation. 2) His blood-oxygen level is low, so he is on oxygen and they want to figure out how to help him breath on his own. As frustrating as this entire experience has been, I'm grateful that we have such good doctors around to treat our boy, and I'm confident that we are getting close to some kind of resolution.
Oh, yeah, the other doctor who came was an endocrinologist, who is looking into the thyroid thing. He thinks we should wait a few weeks and retest, since sometimes newborns have a natural abnormality in their hormone levels, and in two weeks we'll have a better sense of what's going on. The levels aren't outrageously off. They're just playing it safe, and I'm happy for that.
The oxygen issue is a bit trickier, since Lizard Loaf has a couple of things going on. First, he has an artery growing across his trachea, and it might be constricting things. Having seen the specialists, we are now confident that this isn't a problem, which is good because it might have required surgery to repair. There is also some possibility that he has a heart problem. When babies are in the whom there are some built-in "shortcuts" for moving blood to the body before the lungs work. One of them is a flap between the two sides of the heart. They did an echocardiogram on the boy after he was born, and while there is no evidence of a "hole in the heart," it looks like the flap hadn't closed up yet, and blood was flowing both ways across the barrier. The long and short of it is that they are going to check his heart again to make sure it has now closed up. Most likely, it will now be fine, and it still won't explain the oxygen problem.
Now then, the most likely candidate at this point is aspirated fluid in his lungs, which got there either during childbirth of from reflux. If it got there during childbirth, then it isn't going to recur most likely, and as soon as we can get the fluid out of his lungs he'll be fine. If it's reflux, then we'll have to treat the reflux with medication and other things until it goes away and there is the outside chance he might need surgery to repair something. I'm not willing to speculate about that.
The long and short of all this is that the likely culprits have been narrowed down significantly, and Lizard Loaf's pediatrician here at the hospital is now starting to feel confident we're getting at the answer. Consequently, he's started to loosen up when we ask about going home. Unless the boy needs the reflux test, we should be headed home tomorrow afternoon after the echocardiogram. I don't want to jinx it, so I'll stop there, but I'm getting secretly excited inside.
Now that you've read through my 1:30 AM musings on Lizard Loaf's health, I'll reward you with a short video of him sucking on his own lips. It's a few days old, but I really like it still. Make sure you have the volume on to appreciate the noises.
There are two distinct issues that they are trying to assess: 1) Lizard Loaf is exhibiting signs of hypothyroidism, which if left untreated can lead to a significant increase in mental retardation. 2) His blood-oxygen level is low, so he is on oxygen and they want to figure out how to help him breath on his own. As frustrating as this entire experience has been, I'm grateful that we have such good doctors around to treat our boy, and I'm confident that we are getting close to some kind of resolution.
Oh, yeah, the other doctor who came was an endocrinologist, who is looking into the thyroid thing. He thinks we should wait a few weeks and retest, since sometimes newborns have a natural abnormality in their hormone levels, and in two weeks we'll have a better sense of what's going on. The levels aren't outrageously off. They're just playing it safe, and I'm happy for that.
The oxygen issue is a bit trickier, since Lizard Loaf has a couple of things going on. First, he has an artery growing across his trachea, and it might be constricting things. Having seen the specialists, we are now confident that this isn't a problem, which is good because it might have required surgery to repair. There is also some possibility that he has a heart problem. When babies are in the whom there are some built-in "shortcuts" for moving blood to the body before the lungs work. One of them is a flap between the two sides of the heart. They did an echocardiogram on the boy after he was born, and while there is no evidence of a "hole in the heart," it looks like the flap hadn't closed up yet, and blood was flowing both ways across the barrier. The long and short of it is that they are going to check his heart again to make sure it has now closed up. Most likely, it will now be fine, and it still won't explain the oxygen problem.
Now then, the most likely candidate at this point is aspirated fluid in his lungs, which got there either during childbirth of from reflux. If it got there during childbirth, then it isn't going to recur most likely, and as soon as we can get the fluid out of his lungs he'll be fine. If it's reflux, then we'll have to treat the reflux with medication and other things until it goes away and there is the outside chance he might need surgery to repair something. I'm not willing to speculate about that.
The long and short of all this is that the likely culprits have been narrowed down significantly, and Lizard Loaf's pediatrician here at the hospital is now starting to feel confident we're getting at the answer. Consequently, he's started to loosen up when we ask about going home. Unless the boy needs the reflux test, we should be headed home tomorrow afternoon after the echocardiogram. I don't want to jinx it, so I'll stop there, but I'm getting secretly excited inside.
Now that you've read through my 1:30 AM musings on Lizard Loaf's health, I'll reward you with a short video of him sucking on his own lips. It's a few days old, but I really like it still. Make sure you have the volume on to appreciate the noises.
Lizard Loaf Update
Thins have improved significantly overnight. Lizard Loaf just ate 2 ozs., which is six times what he was eating at a time yesterday. He's more awake and alert, able to wake me up with a single cry. He's moving around better as well. I am very happy about this. Now we just need to find out what was wrong to make sure he doesn't end up back here again. He'll be here one more day at least, then we can take him home.
So far I am very happy with the doctors and nurses here. It's now 6:38 AM, and one of the ENT doctors who is going to look at Lizard Loaf's trachea this morning has already come by to check on him. All of the doctors have told us what a worst-case scenario might be, and it's reassuring that they were willing to tell us, even though it won't likely get to that point. If it does, we will have had some warning and will better be able to make informed choices about how to proceed.
Here's hoping he can go home tomorrow.
Lizard Loaf back at the Hospital
This morning, Plainbellied was feeding Lizard Loaf and thought he felt cold, so she took his temperature. It was low, and the doctor said we should take him to the emergency room. This was 4:00 in the morning. When we got to the hospital, someone met us at the door, and he was whisked into the back while I signed him in. In the back, they put him under a warmer and ordered blood tests, and it came back that he was dehydrated. They also took a spinal tap and admitted our little boy to the hospital for 48 hours while they grew cultures to rule out infection. It's definitely an overwhelming feeling, but I feel confident that the doctors will do their best to make sure he is healthy.
Most of you know that Lizard Loaf has Down syndrome, and that can bring its own challenges. We thought we had gotten past them when his echocardiogram came back negative for holes in his heart, but to return to the hospital just days after we had brought him home was a reality check. We're in this for the long haul.
So what's the good news? Well, at 9:00 Lizard Loaf ate three times as much as he had eaten at any other feeding. That's a good sign, as is the fact that his temperature is up. I think he might have turned the corner. He'll still be here a couple of days, but I feel much more confident that he will pull out of this and get better.
Stay tuned. I'll update as things develop. Sorry if this post is a bit disjointed, but I haven't had much sleep today.
Most of you know that Lizard Loaf has Down syndrome, and that can bring its own challenges. We thought we had gotten past them when his echocardiogram came back negative for holes in his heart, but to return to the hospital just days after we had brought him home was a reality check. We're in this for the long haul.
So what's the good news? Well, at 9:00 Lizard Loaf ate three times as much as he had eaten at any other feeding. That's a good sign, as is the fact that his temperature is up. I think he might have turned the corner. He'll still be here a couple of days, but I feel much more confident that he will pull out of this and get better.
Stay tuned. I'll update as things develop. Sorry if this post is a bit disjointed, but I haven't had much sleep today.
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