We'll it was another good day with Ian. Although he didn't really wake up so much until I was ready to leave. That was after a nurse changed his dressing on his PIC line which really made him mad. No matter what I did, he could not be calmed down until she was just about done. His little head was sweating and he was turning purple from crying so hard! This was all before she even really started working on it. She thought it was because he didn't like being held down, even by loving hands. Afterwards, he was wide awake looking right at me, probably thinking, what the heck did you just let them do to me Mommy? I kept talking to him and stroked his head and he looked like he was just melting with love under my hand.
Before that, most of the time I was there, he just laid there looking like a sweet little sleeping baby. Again I was able to change his diaper a couple of times (which pissed him off a bit, like usual), take his temp was able to hold him as well. So nice finally be physically interacting with my son.
Towards the end of my visit Mike and I had a meeting with a few different doctors. A cardiologist came by with basically decent news. She said his heart looked good and that the aortic artery was still dilated and she wasn't sure why, but the pulmonary artery looked much better. She said there was a possiblity that he would "grow into" his dilated aortic.
Both tests for Marfans & Loeyz Dietz have come back negative. They originally did a basic one and then sent out a more specific one, both negative. Strange that these were the issues we thought we'd have for sure. The test for Zellweger's Syndrome also came back negative. Of course this doesn't mean that he won't have any genetic issues but for now, it's good news. His ductus has also closed up properly.
The only thing that is still a bit perplexing from a heart perspective is the fact that he's not happy being weaned off of his very low dose of Milranone. They are not sure why but there's an oral equivalent they can switch to called Captopril, so he can not have to get it via the IV. That will suffice until he'll allow it to be weaned.
As far as figuring out if there are any additional genetic issues, they will have Dr. McCabe look at him again when he's at his best, just before he goes home. He will then do a physical exam of him, to complete a general assessment, and order any additional tests that he feels might be necessary.
Dr. Anderson, who is now the attending Neonatologist for another 1 1/2 weeks, along with the fellow working with her met with us as well. We discussed their goals for the end of Dr. A's two weeks on. Basically, they want him to get off of all IV meds and switched an oral version of anything he still might need.
The biggest thing is to get him onto full feeds and figure out if he can take them via mouth, which means swallowing on his own. He now is taking 30cc's of milk every 3 hours via his tube. That's about half of what he needs to be taking. He's still getting the rest as liquid nutrition via his IV. In regards to the swallowing, they will wait until he's having a really good day and have the OT (Occupational Therapist) come by to try to see how he'll do with it. They said the last time the OT was working with him, he was having a really bad day so it wasn't really fair to assess him then. That sounded good to us. I'll try to make sure I'm there when they do the next test as well. Last time I was sick and couldn't be.
We also discussed the alternative, if he's still having trouble swallowing when he goes home. If so, he will go home with what's called a Gastrostonomy Tube, or a G-tube, in his tummy for feeding. This might be for his whole feeding, if he's not swallowing at all, or just partial if he's taking some but we need to give him more than he can handle by mouth. They also said it's good for him to have it just in case he gets sick and then refuses to take anything by mouth. That way we are able to keep him strong and not have him end up back in the hospital again. Made sense to us. We definitely don't want that. They said it is an easy outpatient visit to take it out when he's ready.
The big thing that has to happen before he goes home is for him to be completely IV free. And for him to be taking in enough milk to be gaining weight. They said Monday's are "growth" days where they weigh the babies. I can't recall if they started weighing him for growth last Monday, or if they will begin this Monday, because he's on decent enough feedings to finally look at him from that perspective. Anyway, they'll see how he does.
They didn't want to give us a length of time before he will go home. We all want him to be completely over his sickness and heading in a positive direction with his weight. And no one wants to rush him. He is a sensitive guy and we want to continue to make forward progress. This all sounded good to us.
We'll meet with the Neurologist again next week. He was out of town yesterday, which is okay with me as well. I didn't really want to have that heavy conversation before the weekend again. At that time we will go through the questions we have now that we've had time to process what was said last week.
So overall pretty decent news, right? While he's not completely out of the woods in regards to his day to day health, he's sure a lot further in a positive direction than even 1 week ago. Now, if we could just turn back time to before the MRI results and have them come out different. Then we'd be so completely excited about having our little boy just about make it through all this with minimal long-term issues from it all. Of course that is not possible. So we'll just take it one day at a time in regards to his brain issue. As we do, we'll enjoy each positive moment with him.
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Definitely decent news.
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