We went to see Sammy this morning. He was a real wiggle butt kicking his legs around and trying to move his arms into a comfortable spot. He was even sucking on his breathing tube and trying to move his hand up to his mouth. It made me feel like even though he's a really sick little boy that he has some normal behavior of a baby.
We went again at lunch time and he was really sucking up a storm. It made me smile seeing his little tongue stick out and lick the breathing tube. And he kept curling up and pulling his hands to his face. He also couldn't keep his left leg propped up where they wanted it...he kept throwing it off to the side so he was basically spread eagle. Silly little boy. It's the first day I've felt like I could smile and enjoy what a beautiful little boy I have.
I haven't been on to actually update on where we're at with Samuel, so let's go back a bit and talk about what's going on as it will make things make a bit more sense...it will also save me having to explain what's going on to lots of different people by posting it in one spot.
Before we left the hospital yesterday morning Dr. Saresh and his resident, Michelle, came in and talked with us in our hospital room about Sammy. It's scary when they want to talk outside of the ICN and want to sit down and talk...after such a rough night I started to freak out a bit. Obviously I'm still freaking out, but it just doesn't make your nerves calm at all. The doctor told us he was starting to get worried about Sammy...bad sign. Sammy's lungs have a problem called P.I.E. though it's not too bad. This means that he has air pockets on the sides of his lungs. It's very common in preemies but can cause lots of problems and worries. Another part of the issue is that Sammy's lungs aren't as porous and spongy like they should be. They are overworked and getting hard. On top of that, they are getting hyper expanded thanks to his dependency on the respirator. All not good things. These are all also things that for Andrew happened very fast and eventually were part of the reason we lost him. Not feeling so good.
The good news is that Sammy isn't as sick as Andrew was yet. They wanted to talk to us about giving Sammy steroids, dexamethasone to be exact. The reason why they don't just do it is because research they have has shown it possibly can lead to higher risks of cerebal palsy or other developmental issues. They brought us the research studies and told us to take our time to make the decision. The sooner the better, but we had time. We reviewed everything, read about other preemies and determined that the chances this could help Sammy were much much greater than the risks of him having the medication. First big medical decision we had to make as parents for our baby boy. The truth is, all the research they provided and all the information we could find were inconclusive. How can you have a control group of preemies? Or people for that matter? There are so many variables that there is no confirmation that this medication has any connection or whether just being a preemie leads to the issues they are talking about. So Sammy got the first dosage of the medication yesterday afternoon.
We went back last night and were told that his X-ray of his lungs showed no change. That's not surprising. He'd just gotten the medication and the respiratory therapists had had to play with his settings moving around his oxygen levels a lot yesterday. We met the weekend doctor who is in all weekend in place of Dr. Saresh, too. Dr. Darnell...I don't like him. He was not very comforting about Sammy. It's not like we don't know that our son is extremely sick, but one could be compassionate about it! He just didn't give me a good vibe at all. Dr. Saresh seems to have great confidence in this doctor though, so I need to trust that he is good and knows what he's doing. For me though, bedside manner is everything and I just didn't like this doctor's bedside manner. He was telling us that touching Sammy (holding his hand, etc.) was affecting his oxygenation because preemies of his age don't like to be touched. We know that Sammy has been very finicky about his position and about touch (he especially doesn't like a diaper change or a wet diaper!), but every time we've been around him, touching and talking, his oxygen levels have gone UP not down. So I tend to think that that's a load of crap. My son would not be gripping my finger for dear life if he didn't want me there touching him.
I have noticed that Sammy responds really well to Camden's voice of all things. It's nice to see. It makes me smile to hear Cam talk to him. I want so much for us to be able to hold Sam, but I know that it's not good for him right now...I'm just really looking forward to that day...I need that right now. Soon enough though...we just need Sammy to get better first...and gain a bit of weight too, that would be good.
Today's nurse was with Sammy the other day and I like her. I really need to create a whole separate post about nurses because I've already learned a lot in that realm...
Anyways...needless to say, it's now a waiting game to see how well this medication is going to work. We are told that we may not see improvement for a few days. But they are talking about leaving Sammy on the meds for only 3 days and then weaning him off (they can't just stop it, they need to wean). I'm hoping we'll have a better idea of how it's going on Monday afternoon and see even just a small improvement! We were told that Sammy will have a quiet afternoon and no other X-rays until tomorrow, so no new information until then.
For now we're just relaxing and getting into a good routine of visiting him 4-5 times a day. Headed back over in about an hour...looking forward to spending more time with my baby...
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