Sunday, August 16, 2009

We Were So Close

So Dr.B (GI) and I spoke about a week ago. He was interested in my opinion as to whether I felt that V's stoma would tighten up around the GJ tube. Ultimately he wants to get him back on gastric feeds like before.

I told him that V is definitely putting on weight which is great. That was a major struggle up till now. His skin is also looking better than it has in months.

However... that naughty stoma just WILL NOT seem to close.

In my opinion, I think that he is going to need a surgical revision. This stoma is not going to close. So if it's going to have to happen, we might as well get it done while he's healthy and infection free. He agreed and told me to call Dr.P (surgeon) to get him scheduled.

We have a consult scheduled for August 24th to get the surgery scheduled.

Then this morning... "IT" happened.

For once the kids slept in, I was in bliss. My five year old, Ryan woke me up around 9:45am because he wanted breakfast.

I got up to fix it and when I walked by V's bed I saw it. Bile, soaked all into his shirt.

At first I cursed the old standby, the med port. It must have opened when he rolled over.

But the med port was closed.

Wait a minute.. this tubing is way longer than it should be... Aaaahhhh!

The whole stinking button, J tube and all was pulled out and curled inside his onesie!

... OH ... MY ...GOD!

So we made it to the ER at about 12:30pm.

He was in the OR by 2:45pm.

We were on our way home by 5:00pm.

Not too bad, we made it home in time for Sunday dinner. If nothing else good came out of today, surgery was able to get a hold of a shorter GJ this time so he has one in that actually fits now.

We were so close. So close to getting this resolved without any real drama.

That would have been a first. Oh well, what would our lives be like with no drama?


  1. Sounds like quite the night for you and your little one! Hope you are able to catch up on some z's during the day :-)
    Thanks for the tip regarding my stoma - saw my dietician last Wednesday and she had THE Infectious Disease Doc of the hospital have a look at it (even though I did not have an appointment - she sure does have connections) - he immediately had a culture taken - and I am now to put medical honey on it twice a day until we know the results of the culture - will blog about that one soon - it's quite interesting. Thanks also for the suggestion with the dressing - will have to look if I can get that in Austria.

  2. My son just has an I am new to a lot of what is your post. However it sounds like a very hectic time. Glad everything got fixed even though you had extra drama.:)


  4. Drama, our kids? Naw, no way. I have to laugh as I say that and think of all the times I ran behind his bed as they were running to PICU. And how many times I got the phone call that they were reintubating him.
    No, our kids don't like drama.