Sorry I didn't get this posted last night. For some reason I was absolutely exhausted despite not waking up until 10am and getting 8 hours of sleep the night before. Go figure.
As I said already, Ayden is doing SO much better than last week. It's amazing and breathtaking to watch this teeny baby come back to life after being told he probably wouldn't live 3 days. Ridiculous!
There are many more obstacles ahead of course, but we'll worry about those when we get to them. Right now we're happy to see progress on a daily basis.
So, yesterday I spent the afternoon at the hospital since I was given the day off. The first thing I noticed when I walked in was that he looked like a baby! He's still tiny of course, but he's gaining a little weight and just looked loads better than he did when I saw him on Thursday. I had to work on Friday and went out of town for the weekend, so I hadn't seen him for 3 days.
Apparently on Saturday he had quite a scare. They put him under anesthesia to do a spinal tap, which is often very difficult for him. His heart actually quit beating, but they couldn't resuscitate him because of a DNR order my sister in law had signed. When he was first admitted they suggested to her to do that since things didn't look good. (Needless to say they've had that overturned) They were able to massage him back to life though. Thank goodness.
Since then he's had some issues with brachycardia (which is a resting heart rate under 60 beats per minute...I had to look that up), which they've determined to be caused by acid reflux. We all pretty much have terrible acid reflux, so that's no surprise, but for him it's obviously more of a problem. I'm guessing that it's putting pressure on his heart. I know I get chest pains sometimes when I have bad heartburn, so I can only imagine what it must be like for him. He had some bouts of it yesterday while I was there, 2 times if I remember correctly. Today it happened 4 times, but they're keeping him on pepcid twice daily to help with that. He does have holes in his stomach too, which needs to heal so he can eat.
While I was there they took him downstairs to have a new feeding tube inserted. At the moment his feeding tube was going directly into his stomach, but I believe because of the reflux thing it wasn't helping him because he was burping it back up. So they put in another tube that goes straight into the intestines so nutrients can be absorbed. The original tube was left in so that he could "burp" through it.
He was super sleepy after he came back from that, understandably. But he was moving around quite a bit before that. I got some good shots of him with his eyes open...which you guys have seen already I believe. He's also sucking on a paci now, which is really good, plus kicking around more and moving his arms. They put a little towel under his back so his shoulders are more forward, which is pushing his arms more across his chest. It's good for mobility I believe. And speaking of that, I don't know if anyone noticed in the pictures, but they've put a little rolled up bit of gauze in his hand. He was gripping his thumb, so having that to hold onto will I guess help open his hand a little. It looks like a baby barbell.
While I was there the infectious disease doctor came in and cleared him. In other words, he no longer has meningitis! He is still on antibiotics for another 10 days though I believe, but that's par for the course. I found out he actually had a rare strain of E.coli that the hospital had never seen before. They had thought he either got it from feces or milk that might have spoiled, but bacteria cultures ruled that out. They really have no idea where he picked it up, but they know it's more difficult to get rid of than others. But, it shouldn't be a problem when all the antibiotics are done.
I think that about covers everything that happened over the past few days. I had to go back to work today, but I did get some info through text from my sister in law. He's up to 5.4 pounds now, which is good since he was 4 lbs 14 oz when he was taken in. He's also off the warmer (basically a little heat lamp over his bed, kind of like he's a little hamburger at McDonalds) and he's up to 10cc of food per hour. I have no idea what 10cc is, but I know he was only eating every 4 hours, so more frequent is better. In the words of the nurse, he needs to "beef up" to get better. heh.
Oh, and they're thinking they're going to move him out of the ICU soon! They said if he has a good day today they'd move him down a floor, which is just the regular part of the hospital. I'm super happy to hear that. One floor down is one floor closer to home. Another thing that'll help is having a picc line put in. Which is a long term IV, essentially. It's put in through a vein in the head and then snaked through to the vena cava (which is a large vein that goes into the heart....I've had to look up a lot of stuff on Wikipedia today!) The nurse said this could shorten his hospital stay by several days since he'll be able to have his antibiotics at home.
They were supposed to put that in yesterday, but they didn't for some reason. Today it was supposed to be done but they were waiting for them to move their roommate so the room could be sterile. As of right now I'm not sure if that has been done yet. It's getting late so I don't want to bother anyone. I'm sure I'll get more information tomorrow. I believe they're also supposed to do another MRI soon, plus a hearing test. But I'm not sure when that'll happen either. One day at a time I guess.
So, things are definitely looking up, don't you think? Last week they thought he was on death's door and now they're making plans for when he gets to leave! It's amazing. I want you guys to know that they're all definitely feeling the love...and certainly appreciate it.
No comments:
Post a Comment