More of the same, but feeling better

Posted on August 13, 2012 by Sarah 5 Comments

It is kind of like Groundhog’s Day when you are waiting in the hospital.  There really aren’t any outward signs of progression so every day starts to feel the same and they blur together.  Evan is making signs that he is starting to feel better, or at the very least starting to get used to things or not be so irritated by things. He definitely knows who nurses are though because he will make a big stink of things very quickly 9 out of 10 times.  Even if they are doing something simple like hooking up his meds or taking his temperature.  If he knows they are around – he lets them know their presence is not wanted.  “You want to put a stethoscope on my chest?  No thank you I will push it away.  I am done with you now.”

 

He is more cuddly in the hospital than he is out of the hospital so it is nice to be able to sit with him and just hang out like when he was an itty bitty baby.  He does feel well enough to sit in bed for a while.  Sometimes he tries to play with his various wires but for the most part he leaves them alone.  Throw on some Peep of course and he is mesmerized.  

We will put some toys in his bed and his favorite game is to throw them overboard so we have to lift up the sides of his baby jail all the way if we aren’t going to play with him.  Otherwise I’ll leave a side down and we will play “catch” and he seems to get a big kick out of it.  I’ve gotten quite a few smiles and giggles from that game.  The hard part is that he wants to pull himself up or try to do some crawling and it makes his incision a little leaky.  It’s pretty gross and I would think painful if not just irritating but he doesn’t really seem to notice.  It does seem to be healing nicely but the steri-strips are starting to itch for baby boy.  Sad that he has to be opened up again in a couple days and start from square 1 all over again. 🙁

Evan got his feeding tube button changed out last night so instead of his Mini ONE he now has a MIC G tube and it will reduce some of his g-tube leaking.  And then maybe he can get a different size when we leave.

Evan was moved up to 2.5L Oxygen through his cannula because is Oxygen saturation keeps dipping low.  The thought was that it is related to his feeding – the more full he is the lower his sats will become.  The respiratory therapist came by though and turned it down to 1.5L.  Per him, for children of Evan’s size, anything over 1L doesn’t to too much except irritate the sinuses.  He does seem to be more used to his cannula so not fighting him over that is nice. Either keep it in or out though because once it moves he gets very upset.

Pacemaker people also came by today and turned Evan’s pacemaker down to 50.  They want to try to do a dry run of how Evan’s heart rate will be prior to removing the pacemaker on Wednesday.  Evan’s rhythm has been anywhere from 52 to as high as 65 but you wouldn’t tell his heart is slow because he is still just as active.

They continued to grow his blood samples and another species of Pseudomonas was discovered so they are changing one of his antibiotics from Gentamicin to Tobramycin.  Hey yeah a generic drug that Pfizer makes.  Too bad it is on a shortage list.  Anyone want to work overtime this weekend?  ahahahahaha