So obviously i am updating every two to three days. I wish i could update every day but sometimes it just isnt possible. Regardless, heres the latest. Friday after Lydons testing was done, we took him down to IR for them to replace his feeding tube. It was horrible for him and us (like bang your head in the wall and cry with him) but it only took a few minutes and we got it back in without any anesthesia. In our world, that is success! After that, luckily all went smoothly and we were transferred back to Hermann. All was well, Friday night and Saturday for the most part. Let me stop here and say how greatful,thankfull, and appreciative we are to all of Lydons grandparents. Mimi and Grandbuddy, Paw Paw and Grandmommy, and Nanny and Poppy have ALL pitched in and helped us immensely but this weekend they made it possible for me to me home Friday and Saturday night. It was so nice to eat some decent food and sleep in my own bed. Anyway, Saturday afternoon, they started running some of Lydons milk back thru his feeding tube. He seemd to be doing great, even pretending to be a lil monkey and hanging on the crib! ;) But shortly there after, he started running fever. They gave him Motrin but within a couple of hours, it was steadily climbing to nearly 103. The team called our Immunologist and they decided to get blood and urine cultures and preemptively start antibiotics. Not fun!! :((
So, what we know now is that Lydon has an infection im his blood. We think it is probably from the central line itself but we wont know for sure for another day or so. The good news is we started the antibiotics really quickly and today, his fever has already started trending downward. We also got the results of the manometry from TCH. His stomach muscles and intestinal motility is not that bad. Our problem is his nerves. The signals are not doing their job adequately in telling his stomach and intestines what to do. So, this causes his poor GI function. He did respond to one medication but it can only be given by injection or iv. We are working on getting this med on board and figuring out the best way to give it. We hope this makes a big difference. Otherwise, aat least some amount of TPN seems inevitable. I am trying to wrap my brain around how we adjust our lives to this major change. Schedules will have to be adjusted, labs drawn and results checked...heck, my refrigerator will have to be rearranged, that alone is major! TPN comes in big bags with smaller bags of vitamins and supplements that have to be mixed. Each complete bag cost approx 1,000 and you receive tpn for a week and it must be kept refrigerated. At $7,000 a pop, I dont think our semi cool fridge in the garage is gonna cut it! Lots and lots to think about. For now, we are stuck here at least another 5-7 days until we can get the infection cleared and get his port placed.