TJ update 2/09/2009~ Update on TJ coming home!

Ok, This is pretty long, I’m covering a lot, sorry.

So here’s the deal, if TJ weren’t still on antibiotics Via PICC line and being considered for a Gtube, then he’d be home in a day or two.
He’s got until the 17th for his antibiotics to be finished with, and he’s on Vanco given via PICC line. Normally they’d send him home with a picc line, however they haven’t been using the typical dressing so his line isn’t held in by much more than a piece of gauze and some coban.

I personally don’t feel comfortable bringing him home with it because A) it’s not dressed so that it’s watertight, and B) what would I do if the dressing came off or the Picc line came out one night?

So, I’m going to ask that they keep him until the 17th (or 18th.. Depending on if it’s day or night he’s done with the antibiotics) I’m also asking them to consider closing up his chest since it hasn’t healed really over the last 2 weeks. There isn’t any active infection any longer.

Tyler is currently about 4.5 kilos and was very VERY Grumpy today. They are still weaning him on his pain meds so I’m sure that’s why. His nurse did ask the doctors this morning to suspend his weaning for the day due to him being so agitated. Luckily he’s had NO problems with Temps or Desats the last few days.


Here is what’s happened with him today:
I had a consult with his doctors and the Respiratory Therapists.
TJ gets Pulmacord (spelling?) 2x a day just to open up his lungs and reduce any inflammation. I know some of you have voiced that you are worried about me considering bringing him along on our family vacation to Ark/Ok.

And I asked the doctors about it (as was the plan) .

According to the RT, as long as we are fully prepared with his meds, and his other doctors clear him, AND we are prepared for a cold if he gets one, she has cleared him to fly to Ark. With us.
She thinks that because he’s had his RSV shot and is current with vaccinations that he should be just fine. The main doctor on his Primary team has told me that once TJ gets the all clear from Cardiology, and if he gets the Gtube~ Gastroenterology, and his pediatrician that he’ll be ok to go, especially since it‘s only 8 days (7nights).

He said that when they release TJ he’ll be healthy and fine (he’s healthy now, just isn’t eating on his own yet) That TJ should be ok to go on the trip. He said they wouldn’t be releasing him if he weren’t healthy enough to be around other people or outside.
We will have him home for at least 2 weeks anyway before the trip, so we can get him re acclimated to being home before we go. AND if the pediatrician isn’t comfortable with him going, then we’ll have his grandma watch him.

I spoke also to the primary doctor about the G-Tube, and here’s what we decided until I speak with gastroenterology~:
He’s had the NG tube for 6 months off and on. I made it clear that my concern for infection with a Gtube Is MUCH more than with a simple NG tube. Because we know what to expect from an NG tube. We can easily handle a sinus infection or something like that should he even get one. I use sterile supplies when placing his tube, and sterilize the tube itself if I need to Re-place it.

1) They will get a consult from TJ’s Pediatric Dermatologist to get the all clear on a Gtube.
2) They’ll speak to speech to get the OK to train me to begin bottle feeding TJ so that I can work with him on a regular basis.
3) They will consider leaving in the NG tube and having follow up appointments at 1 or two months post discharge so that I’ll have a chance to get him nippling all his feeds by mouth.

If he’s not nippling it all by then, then they will go ahead with a Gtube.


I also left a small page of questions for each, “Dermatology, Cardiology, Gastroenterology, and Endo.” As well as a page of notes and contact information for TJ’s case manager through Regional Center, and Contact information for the people we know with the F.I.R.S.T. foundation (for ppl with Ichthyosis).
And when speaking to his Primary doctor I got a list of his medications, along with the meds they think he’ll continue after discharge.

Now I can make my medication schedule (yay!) and get our “system” set up so that the lady with CPS can see it when she comes by Wednesday.

I waited for 4 hrs to speak with speech, as well as the GI doctors. But they couldn’t make it which I understand. Hopefully the nurse will be able to get answers to my questions.

So everything has been discussed, and of course, we will be speaking to his doctors after he gets discharged before we book it, and if they say no then he won’t go. I’m not going to go against doctors orders, and I really don’t want to end up with TJ having an infection or ending up really sick. (a cold isn’t REALLY sick, kids always get colds……)

But if they continue to clear it before I schedule it, then we’re going to all go as a family, and I’ll just plan for any emergency as best as possible and get a doctor lined up in Ft. Smith or even Ok. City (great hospital there)

So be sure, I’m not asking what people think about us taking TJ along.
I’m simply letting you know that I’m doing all possible to make sure he’s healthy before during and after the trip. As well as updating all of you on how he’s doing health wise.

Cindie