At this point I am beginning to wonder if we should just call Brenner Children's Hospital home. We have spent more time inpatient here than at our own home in the past 3 months. Zach is still here this stay, he was admitted on June 16, and here it is nearing July and we still have no answers. The doctors are working very hard to figure him out but he is very complicated.
This week he has had several tests done to try to eliminate some issues. He had an EEG done to check for seizures, they glued little probes all over his head and then wrapped his head up and hooked him to a big computer. He also had a camcorder on him all night and if he woke up crying or vomiting, I had to push a button to mark the time it happened. He still lookd pretty cute in his new style.
It turned out that he had no seizure activity, which is good.
He then had an upper endoscopy, colonoscopy with biopsies and had the antroduedenal manometry catheters placed for motility testing. He had to be hooked up to another machine for 24 hours to measure the contractions of his stomach, duedenum and small intestines. They gave different medicines to him to stimulate contractions and the test turned out to provide that his motility is working good . That is good news but still leaves us in the dark about what is going on with him.
Over the weekend, the dr's wanted to try to try some pedialyte running into his J tube. He did ok with it running at first, they only got up to 10 ml/hr but after a while he started to get really uncomfortable so they stopped. A couple of hours later he started vomiting and continued to vomit all night. He also spiked a 104 fever and got the chills. The on call residents had to give him extra fluids due to dehydration and hook him up to heart monitors since his heart rate was really high.
He continued to run a fever on and off yesterday so the surgeon decided to remove his central line. He already had an infection on the skin around the opening that wasn't clearing up and now with the high fevers and positive blood cultures for a blood infection the best option is to take out the line so the infection will clear before it spreads to organs. The transport team came and placed an iv in his arm last night to sustain him until he can have another central line placed. Then the surgery resident came and pulled out the line. And yes, I mean they just pull it out. So that wasn't pleasant at all for Zach. My poor boy :(
Today, he is still very fussy and still has a fever on and off. They came by and did an echo of his heart...no results yet, and they pulled blood for another blood culture. Without the central line, pulling blood is a lot harder. Zach is hard to get blood from, and he is swollen from all the fluids so it was no fun.
The GI doctor also came by with our game plan for this week. He wants to take advantage of our time here and time without the central line to hopefully make progress with J tube feeds. Once his fever breaks and stays gone we will try some J tube feeds and it might well, or it might not...we won't know till we try again. The Dr is thinking since the motility is good, it could be a problem with his nerves or another system affecting his digestive tract.
At this point it is crucial that we do make some progress with nutrition, if the J tube feeds do not work we have to revisit what his long term nutrition needs will be. Being on TPN is not good and it will eventually destroy your liver so that is not a good option but right now he cannot survive without it. We will see what the rest of this week holds and probably next week he will undergo another surgery will be number 9, to have another central line placed.