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May 28th

posted May 28, 2010, 10:59 AM by Sean Molby   [ updated May 29, 2010, 9:50 PM ]

I know it has been a while and I am sorry but it has been really crazy here at the hospital and we have been up here most of the time and by the time we do get back to the house we are too exhausted to post anything.


There have been quite a few changes since we last posted. Tristan was set to be released last Monday and then again this upcoming Monday but we have descovered he is not doing as well as he was. He was having what we thought was some minor complications that turned out to be very major. When they took the feeding tube out we thought he had been doing good but when we tried to switch him to unthickened breast milk he was not doing well and aspirating a lot so they did a swallow study to figure out why, it turns out that he is silently aspirating with every few swallows even with the thickener and so it was determined that it is not safe to feed him by mouth, meaning they need to put in a GI feeding tube, so another surgery. It was scheduled for today, however other newer complications have set it back.


He was having blood in his stools and they were monitoring those, thinking it might be some sort of allergy. They were getting progressively worse and despite my constant asking they were just planning to continue to monitor it. Thankfully a new attending doctor came on the floor and was reviewing Tristan’s case and he inquired why they had not contacted GI (the gut doctors) for his stools. Long story short GI was consulted they did a few tests and found that Tristan had developed NEC (necrotizing endocolitis). NEC is a bacterial infection found in the GI tract that after a period of time eats through the gut and deadens it making it useless, this if left untreated or not caught is fatal… if it is not caught early enough they have to do surgery to remove part of the small intestines-something that Tristan is not stable enough for. The treatment for this is a combination of antibiotics and gut rest, meaning nothing can be introduced into his stomach for 10-14 days, so basically they starve him. He is on TPNs and lipids for nutrition but he still feels the hunger. They do believe they caught it in time but it will take through the end of the course of antibiotics to know for sure. In addition to this the bacteria manage to seep through his intestinal walls and infect his blood, which for him is dangerous since that blood is then pumped to his heart, they again believe that they started the antibiotics on time and that no damage has been done but they will have to wait till next week when they do another echocardiogram to know for sure.


As of know Tristan is in isolation, he can still have visitors but we have to be cautious that no new germs are introduced into Tristan’s body. He has been a trooper through all of this despite feeling hunger pains and all the sticks they do on him to take blood samples, he is still rarely fussy. The nurses up here love him to death and despite GI saying they thought he might benefit from going to the PICU for better monitoring, the 4th floor staff all agreed they wanted to keep him up stairs were he is at and have made some exceptions to keep him there. The nurses have been wonderful through all of this and very supportive. It has been scary but hopefully they did catch it in time and this is only a temporary set back.


They will restart Tristan’s feeds by NG tube on June 4th or 5th but they will go very slowly and with a very basic elemental formula. Then after he has showed signs of being able to digest that properly and no new bacteria is found they will then discuss doing the GI surgery for a G-tube for feeding. This will be 3-4 weeks away.


Please keep Tristan in your prayers as he is in need of them again. Thank you all for your support~Christy


The number to his room is 816 460 1044 extension 4713. Just call before you come up and please make sure you or anyone with you has NO symptoms of illness at all. It is very important Tristan not be subjected to any viruses or bacterial infections that could set him back.