Facebook update from Help Anton

Day +169 Where do I start... Our team of doctors have been working around the clock trying to figure out what is going on with Anton. They have run every test possible, done more bloodwork than you could imagine and still don't have any solid answers. I have had several of them tell me they sit at home go through everything and try to figure out if they are missing something. One thing our amazing NP Shannon discovered (while talking with the pharmacist) is tacro (the immune suppressant med Anton is on) can cause fever in 9 to 59% of patients. So they have started a ten week wean to see if this is the cause of Anton's random fevers. He is still spiking at 104 every few days and has had a fever almost all of the 50+ days he has been inpatient (it does go down with meds). I can't remember if I posted it so sorry if this is repeat information. They have also taken Anton off all of his iv antibiotics except for his antifungal, and his twice a week antibiotic to prevent pneumonia. He was on so many antibiotics and still spiking so we all discussed the risk benefits and decided to take most of the antibiotics away to see how he did. So far he is doing about the same which is good, he isn't getting worse. We took him off of his gabapentin several weeks ago because he was throwing up so much and they don't have an iv version. We put him back on it yesterday so I'm hoping it helps him be more comfortable. We also for the first time in the 2+ years he has been on it went up a little on his methadone. Anton is miserable most of the time. He barly talks, doesn't have energy to play, and is still cold most of the time (from fevers). Kendall has been here for the past 4 days which always helps because Anton loves spending time with him. Anton still isn't back to his normal happy self but at least he tries when kendall is around. Two days ago they did some super important charge nurse work as well as yesterday. I love watching Anton and Kendall interact, it is seriously the sweetest thing ever. We have been working with child life and Intergrated health to help Anton deal with some anxiety he is having. We realized Anton will be totally fine until a doctor or nurse walks in the room then he freaks out and eventually throws up. I can get him to control it most of the time but it is exhausting. Amy from child life brought a book in for the staff to sign and that has helped a ton because he is now excited about them coming in instead of anxious. Anton has been on TPN for way too long and I'm so ready to get him off of it. GI put Anton on a motility med to try to help his gut start working again. He was on it for over a week and his little tummy hurt so much I had them take him off of it yesterday. Having him on a med that forces his stomach to cramp and contract didn't sound like the best idea in the world to me since his tummy is already hurting. He already seems much more comfortable. Anton is anxious about a lot of things now and one of them is his g-tube feeds. We had his rate set at 1ml and hour (which is nothing) and he yelled in pain and threw up the whole time. We realized it was because he was hooked up to his g-tube and for whatever reason he was anxious about it. We stopped the feeds (that was a few days ago). I told them I wanted to start giving him Real Food Blends again. He isn't tolorating formula and he needs real food on his stomach. They agreed to let me try it. We are starting at 5mls three times a day to see how he does on it. I am pretty sure Anton is also aspirating on nectar thick liquids because he coughs and then throws up once he is done drinking most of the time. So he is having a swallow study done today to check on that. They are also going to look for strictures. He had his very first esophageal dilatation a few weeks ago and I'm almost positive the reason he needed one is because of how much he was throwing up. So I think it's worth looking into since he is still throwing up. Wita (Jason's mom) and I went and had a girls day yesterday while Jason stayed with Anton. It was a much needed break from the hospital (I have gotten away several times since she has been here I just don't always post it). I enjoyed our time together!!! Wita headed back to tx yesterday and we were all so sad to see her go. It was such a blessing having here here these last few weeks. I feel like we have a good plan in place for Anton. It will most likely take several weeks for his fever to go away (if tacro is to blame) but at least now we have a plan! I will keep y'all updated! - September 11, 2015 at 01:58AM http://ift.tt/1r2lUi4