Tuesday, October 22, 2013

That didnt last long!!

The day after our last post we were back in the ER! The tube the doc put in came out, balloon and all! Like I've said a million time in the last week, the tube is toast! We've stretched it all out trying to get something to work! Nothing will work but surgically closing it! 
Let the drama continue!
Friday night was when the tube came out and I couldn't get it to stay in, so we hit the ER. This time the surgeon did come down and look at it, but he put the same tube in that we started with in the very beginning of all this! He upped he size again, so we've gone from a 12 to an 18 in a couple weeks. He also put 5 mls of fluid in the balloon, which I was told was not safe for a tube that is on the intestine, not the stomach. Again we were sent home. By the time we got home at 3am he had leaked through his shirt. I dressed it up good and went to bed. At 7am it had leaked completely drenching his bed! I don't think he got an ounce of fluid that night! 
At this point I'm beyond livid. I don't know what to do! I was deciding if I should take him to a different hospital. I called his peds office, and the doc on call was also livid, and she started calling around to find out whose responsible for this problem! She called me back a couple hours later exasperated! She really didnt get anywhere either. The surgeon, same one from the ER, said to come back there! So at that point we had to make a decision. Take him back once more or go to a different hospital. We weighed the options and pros and cons. The ped had told the ER staff and also surgery that we were beyond upset. We decided to go one more time and raise holy hell if needed! 
From the second we got there the front staff knew who we were and that we were pissed. We got back quickly and they had already made plans to admit him. So we went back to our PICU home, feeds were stopped and more wound care was set up. I think they are finally seeing that this tube needs to go. The surgeon that came in said she hated J tubes for this very reason. She agrees that it needs to come out, but which way to take it out is the question. No one wants to touch Jax with a ten foot pole. They all want to wait until his surgeon comes back and let him handle it! 
So where we stand at this moment is we've been admitted since Saturday, on tpn and lipids, had 3 ER visits and 2 admits in two weeks. Tomorrow finally Jax surgeon is back, and some kind if surgery will happen, exactly what, I don't know!
I'm super super upset right now because our Disney Halloween party is tomorrow night. Jax costume was specially made for him, and he matches Arina. Our Disney friends have been dying to see them, and there's no way Jax will make it! So so so upset right now! Arina won't be near as cute without her match!
Bleh, this stinks!!!


Kimberly Lucchesi said...

Lacey, I am so sorry you are dealing with this right now. I am a home health peds nurse and have a patient who just dealt with the exact same thing. His J tube port would not stop leaking, causing major skin breakdown and everything. They ended up doing the same thing you are doing. He was admitted and put on TPN. He had surgery and they found that his intestines were all turned in knots so the fluid couldn't get through. They fixed the knots and let him heal and now he is back to JT feeds with NO leakage. I hope things go well with the surgeon. Have a great Halloween, the best you can in the hospital.