It has been a long couple of weeks since I updated about Zach. Sad to say, we are in the hospital again...so much has happened, I don't even know where to begin or what to write.
We did get 2 whole weeks at home! Then he woke up sick, vomiting, chills, fever so we were admitted for probable sepsis. It turned out he grew yeast again from his line...that was only 2 weeks old!! Words can't tell you how we felt about that. He can't afford to go through lines every 2 weeks, I couldn't believe he grew the exact same thing.
So the plan was, leave the infected line in and treat with mycafungin for a week and then remove and replace the same day. His surgeon was afraid of what happened last time with losing iv's, and blood sugar issues. Zach was feeling pretty good anyway so that was hope he was getting better.
So we spent our Thanksgiving in the hospital, my mom and I ordered lunch from Cracker Barrel and had a good time with our favorite nurse, Ryanne. Then the rest of the family came up for dinner together.
Zach also had an eeg on Thanksgiving to determine if his "reaction" to medicines being put in his J tube was any seizure activity...it is not.
Then friday morning, Zach had surgery. He woke up very nauseaus and vomited in the holding room before surgery and then after surgery he continued to vomit. He was vomiting every 15-30 minutes all day and night. It was by this point just blood, and he was draining blood..then on saturday, he continued to vomit and was dehydrated....wouldn't wake up and very painful. They had him on IV zofran, IV kytril, IV reglan, phenegren for vomiting and IV tylenol, IV nubain, IV dilaudid for pain.
They did an upper GI contrast study on Saturday that showed that his stomach/duodenum wasn't emptying the contrast so his GI dr decided to scope him first thing Sunday morning. During the scope he found that his esophagus and stomach are very inflammed from vomiting so much. But he also reached a point where he couldn't get the scope through so he placed some contrast in and it and the contrast just came back into his stomach. So the GI dr thinks he has an obstruction.
But his surgeon doens't think he has an obstruction, he has had a surgery before where his body was acting like an obstruction but nothing was there. So his surgeon is leary. We know his motility is not good so it could be that,,,we just know yet.
I do know that my poor son has been sicker this weekend than ever before. He has been vomiting since friday morning and in so much pain. He spent 3 days in PIMC because he was so sick. He has been on lots of meds and none of them really helping. Today was the first day he got out of bed...it was short, about a minute but it was something.
We are still waiting to find out what we are doing. He will have a test tomorrow where they will place a tp tube into his stomach and duodenum and inject contrast right at the spot they think is obstructed. If it is then surgery will be convinced and if not then the dr's are talking about doing a celiac plexus nerve block. It should help with pain and vomiting. I am supposed to talk to the pain dr today that would do it, he hasn't done one on a child Zach's age so it is scary.
After that, I am not sure what is going to happen. I guess we need to discuss transplant again....that is a scary road and I wasn't ready for it yet but looks like it will be sooner than later.