Wednesday, May 29, 2013

I just noticed I haven't posted since Jax came home! 

That's because this naughty boy has kept me on my toes since then!

Jax came home a week ago Sunday. He tolerated his feeds without having to go backwards at all! That is a first for us! 
He did really well the first day or so home. Then Monday night he had an episode where I noticed his color was off, and he was breathing fast. I checked his sats and they were at 86. No sign of illness, nothing! Throughout the night he continued to have a high heartrate and low sats. I was gearing up for an ER visit, and he woke up just fine! Oh this boy!
But the next few days he continued to have lower than normal sats and higher heartrate. He also was still breathing harder than normal. Then I noticed puss at the J tube site. I called surgery, and they said it was fine, probably a reaction to the stitch. The next day I took him to the ER because I feared he was getting septic! The ER also thought the site looked fine, but they were going to keep him because his potassium was really low! I talked them into letting me take him home with extra potassium, coming back to the ER for a repeat potassium! 
The next day his potassium came out almost too high! WTH, the doc and I both agreed that his potassium could not have jumped that high in one day without IV potassium. We are repeating potassium today. His j tube has also continued to get worse. It now leaks bile, and is barely hanging on by one stitch, because the rest of the stitches have eaten away at his skin, and he now has a nasty wound around the entire tube. Whether he's allergic to the stitches or the tube itself, they need to go! The bad part is I think this tube was supposed to stay in for six weeks until the tract healed. We have our surgery appointment today, and I'm a bit worried as to what we are going to have to do with this site, and how much pain it will cause him, because he does not like the dressing changes! It's very sore! Keeping my fingers crossed the surgeon has a brilliant idea on how to fix this problem! 
Wish me luck because we are also going to ask the surgeon about a port today. Every doc I ask shrugs me off. But the surgeon is the one that places them, and my ped agreed to help advocate for one after our ER experience. The IV they got, in his armpit, with ultra sound, lasted a half hour! His potassium was so low and we lost his line before they could get IV potassium in, and they didn't like that at all! Hopefully the surgeon will also understand the need for a port!!


Heidi said...

Is he getting the port? Poor kid, it's no fun getting poked all of the time.