Just a reminder: if you're not seeing blog posts you can always check out Brady's facebook page -- Sweet Brady -- for up-to-date info.
Now, a long overdue update...
B is back in the hospital. Thursday 2/23 he started running low grade fevers off and on. He would feel slightly warm, I'd check his temp and it would be hovering around 100 and then when I'd recheck an hour later he would be fine so we decided to just keep an eye on it. Then Saturday night I noticed he felt pretty warm. I unwrapped him and changed him into cooler jammies and his temp normalized. But by Sunday morning we knew he wasn't feeling well. His fever was ranging between 100.0 and 101.5 and he was starting to show dips in sats, hanging out around 92%. He was also having more frequent and borderline diarrhea poops (TMI, sorry!). We called the pediatrician and they said for us to take him to the pediatric urgent care in Williamsville. We got there around 11:30am and knew right away things were not good. When we arrived there his temp was 103 and his sats were worsening. They drew labs and said he was dehydrated and his liver numbers were elevated. They felt he was too unstable for us to take him to the ER and called the WCHOB Stat Team to transport him by ambulance. They kind of down played things and were really calm about the whole thing so to be honest we didn't really think things were too bad...until we got into the ambulance and they said we were going "hot", meaning with lights and sirens! Um, okay. Never a good sign. When we arrived in the ER they explained that Brady's sodium was very elevated and that that put him at high risk of having a seizure. He was admitted to the PICU :(
He spent eleven days in the ICU and was transferred to the 4th floor yesterday evening. Turns out he caught rotavirus and because he has no immune system he could not fight it off. They ended up putting IGG (antibodies) into his gut through his GT. The IGG fought off the infection that his body couldn't and he stabilized pretty quickly at that point.
Between the crazy leaking from the tube and the rotavirus he's lost a lot of weight again. He dropped down to just 7 pounds. He has started gaining a little again and is up to 8lb 1oz. They've switched his G-tube to a GJ and he is currently getting all his food through the J port, which feeds directly into his jejunum...
The hope is that this will give his stoma (hole in his tummy where the tube goes in) a rest and allow it to heal so that it won't leak any more. They've also dialed down the caloric concentration of the formula (which may have contributed to his diarrhea) and changed it to Pregestimil which is specially formulated with a different type of fat, called MCT oil, to be gentler on his liver. We're starting out slowly. The rate is being increased by just a few ml's per day. The hope is that by using the J he will be able to eventually tolerate a higher volume and get the calories he needs without having to concentrate his formula so much. Fingers crossed!!
For anyone asking about Team Brady bracelets, we apologize but they are currently sold out -- wow! More are on the way. Watch for facebook updates for when the new order arrives. Chinese auction baskets are being collected and I believe they're hoping to have the majority of them collected by March 31st so if you have a donation call any of the committee members to arrange a pick up time. Tickets are selling fast too so please don't forget to get yours! We have been completely overwhelmed by the incredible response to this benefit. We are truly blessed with an amazing community, family, and group of friends. Thank you times a million!
Love & Hugs,
Shari
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