On Sunday we found out that Zach's central line culture grew yeast....not good, that is the worst thing you want in your central line. It means you automatically lose your line, you can't clear yeast. So the doctors added in fungal meds in hopes to treat a few days with the line until his surgeon returned on Tuesday.
Sunday he ran low grade fevers all day but otherwise felt pretty good, he must have been pretty energized from the night before. Sunday night he ended up having hallucinations all night, he screamed and cryed and yelled that spiders and snakes and bugs were getting him...this lasted from midnight til 7am, then he slept some then continued throughout the day on Monday.
Monday of course was Halloween and Zach and Luke were both ninja turtles. Luke wanted to come see us instead of going to his halloween party at school him and Nana came up and all of them went to the party that the hospital had in the playroom. Right about lunchtime he started getting sick again, spiked a 104 fever, moaning, chills. So the doctors changed his meds around and put him back on Vanc, meropenum and changed his fungal med. Around 1 am Tuesday night, he started shaking really badly, spiked another fever and his stats kept dropping so we knew his line had to come out soon. His line had also starting clotting, you couldn't get any blood return on it.
So Tuesday his surgeon was back and the plan was to take Zach to the sedation room at 2pm and place him under sedation, place 2 iv's and remove his central line. They sedated him and the transport team got to work to try to find iv sites, unfortunately that is pretty hard in Zach. They had 5 transport (the team that rides on the helicopter) people and the PICU attending/anesthesia trying to place iv's and no one could get them in. Finally after about 30-45 minutes his surgeon got one. And then another was placed, both in his feet...poor boy :(
They had to run D10 in both iv's to keep his sugar levels up and still run the two antibiotics and fungal meds and fluid replacement. The next morning, the first iv had blown and transport had to come again and try to place another iv. Usually when you remove a line for infection, the plan is to wait 3-5 days for the infection to clear and then place a new line...but we didn't have the time to do that. His iv's wouldn't last and he had no access for more iv's and he can't go without due to sugar issues so they wanted to place a new one on Thursday.
Thursday morning when we got down to surgery, they took us down around 6:30 in the morning, we found that both iv's had blown. So the dr's were paged and everything was rushed trying to get him back into surgery before his sugar dropped to dangerous levels.
Dr P was placing a new central line, taking a muscle biopsy from his thigh and Dr H was doing an endoscopy to check why he has had so much blood from his g tube and then he was going for his MRI with spectroscopy. He finally got done and back to his room about 1pm. But the fun didn't end there, the first time we flushed his central line, his chest got really red and streaky looking and everyone freaked out. It looked like it had blown the vein. So the surgery residents and Dr P came up and determined that it was good, he just had a reaction to local anesthesia they had used. *note to self, allergic to lidocane*
Today went well, Zach is pretty sore in his leg from the biopsy. He is fine if he just sits still but if he trys to walk or put any weight on that leg he crys. So we have him on tylenol every 6 hours to help. I also had a consult with the pallative care nurse today at the hospital. She works with the enhanced care team which is over chronically ill children and complex medical cases. She is going to be over Zach's case now, which I am hoping will be a big relief for me. She will coordinate all of his doctors and keep them talking and help with getting all his info to the Pittsburgh neuro dr and so on. I am really hoping that is helps a lot.
We got to go home this afternoon, he is on vanc and the fungal med for another 10 days at home. We also have several follow up appts, GI is in 2 weeks and we go back to see Dr P in 2 weeks to get biopsy results. They are also sending the MRI study and biopsy results to the Pittsburgh dr for him to evaluate. We still have about 3-4 more weeks on the bloodwork to come back so we are still in a waiting game. For now we just pray for no more infections and pray for good days to enjoy.