Facebook update from Help Anton

Day +173 As Anton's NP Shannon always says "this kid loves vanco." About 12 hours after Anton's first dose of vancomycin he was in the halls, charting with Kendall. Still no where near his "normal" self but he talked more tonight than I have heard him talk in a week. He can't stay on vancomycin forever because he is already becoming resistant to it but oh man if he could we would be in good shape. Praying tomorrow is a better day. - September 15, 2015 at 11:20PM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton

Day +173 Anton has slept a lot the past few days and his fever has been getting higher and staying higher so I told his doctor yesterday I was 90% sure he had a blood infection. And guess what we found out today??? He has another infection in his blood. I'm not super worried about it because they caught it quickly. Anton normally only gets one positive culture with blood infections before the antibiotics knock it out. So far the blood infections he has had in the past cleared pretty quickly. What I am worried about is the possiably of Anton having to get another central line! I'm hoping this won't be the case this time... Anton will be going in the o.r. next week for more six month post transplant tests. They will check his engraftment again, and do a bone marrow biopsy. This has kind of sent me into a panic today. Anytime a child with EB goes in the o.r. it is scary. Combined with the fact that the last few times he has gone back it hasn't been the smoothest process ever I am dreading it. Although at the same time I am looking forward to getting the results of the bone marrow biopsy. I know worrying about it won't change anything but I am just feeling overwhelmed, lonely, sad, and scared today. I'm sure I will be fine tomorrow just trying to keep it real with y'all. I did get to go back to RMH to have dinner with Jason, Kenya, and Judah tonight. I am hoping to do that more often so we can reconnect and spend some time together. via Help Anton http://ift.tt/1MalBx2 September 15, 2015 at 08:14PM

Facebook update [pic] from Help Anton

Day +172 I think it's important to set a few things straight. I know it is hard to keep up with everything that is going on because it's a lot but there are some things I want you all to know. Anton flew through his transplant. He was 100% engrafted with his donors cells 21 days after transplant. He hasn't gotten a blister AT ALL in the past 2 months. His skin went from being SUPER fraigle, almost see through, and shinny, to looking and feeling like healthy skin. He has only gotten a few small wounds in the last several months but nothing even close to what he got before transplant. We only have to wrap open wounds and can leave the rest of his skin unwrapped. If we had the choice we would chose transplant all over again. It has literally changed Anton's life for the better. I don't think I will ever be able to say enough good things about the work Dr. Tolar is doing. My hope is that no one would ever look at Anton's fb page and be scared of transplant because of what he is going through. Every child who goes through transplant has a different experience and Anton is just having more complications than most. BMT has been amazing for our sweet boys skin, the work Dr. Tolar is doing here is mind blowing. We knew going into transplant that we would most likely be here for six months to a year because Anton's health wasn't all that great before transplant. Anton would run a fever of over 101 at least once a week for no reason (pre-transplant). After transplant any tempture of 100.5 is an automatic readmission to the BMT floor. Anton was admitted to the hospital several times a year back home for fevers and infection so we knew that would be multiplied here. I know I have posted it before but I want to post it again. Anton has spiked a fever at least once a day for the past 60 days. He started getting fevers two weeks after they put him on tacro (an immune suppressant med). Come to find out tacro can cause fevers in up to 59% of people who take it. So there is a very good chance that his tacro is to blame for the fevers. Because it is an immune suppressant he has to be weaned off slowly. The wean will take 10 weeks so if that is the cause of the fevers we will most likely be here until it is totally out of his system (so for several more weeks). Our team hasn't stopped there though. They check blood cultures everyday, are always looking for/ testing for viruses. They aren't going to just wait it out but are very proactive in making sure nothing else is going on. These fevers are driving them crazy and they have all said they won't stop until they get to the bottom of it. I 100% trust our BMT team and wouldn't want anyone else caring for him right now. I know a lot of you are worried about him and even scared but please know that other than the fevers nothing else is going on at the moment. No viruses, no blood infections, all of his body systems are functioning properly, nothing is shutting down. Other than fevers, bring tired, and being grumpy he is doing good. I will keep posting updates and I am not planning on holding back any information so you can rest assured that if something more was going on you guys would all know. via Help Anton http://ift.tt/1icUfME September 15, 2015 at 01:10AM

Facebook update [pic] from Help Anton

Day +172 Anton did great for his swallow study and he can still have necter thick liquids. We just have to give him smaller amounts. Anton is still having fevers with the highest one getting to 105.1. He has been VERY tired for the past 4 days and has been asleep more than awake. We started feeding him 15 mls every 2 hours and just pushing it with a syringe. He has done great with this. We are going to try to feed him through the night tonight so we shall see how he does. He is still grumpy and doesn't have much energy. We have started rounding (talking about his care and treatment plan) in the hall so his doctors can just come in his room and play with or talk to him. This has helped a ton and he has stopped throwing up when they come in the room. He is still being dramatic but at least he stopped throwing up! He had an echo of his heart today to check for infection. We haven't gotten the results back yet. I think that's it. via Help Anton http://ift.tt/1VYDMKR September 14, 2015 at 05:10PM

Facebook update [pic] from Help Anton

via Help Anton http://ift.tt/1NllC2V September 11, 2015 at 01:58AM

Facebook update [pic] from Help Anton

via Help Anton http://ift.tt/1i2Dgwu September 11, 2015 at 01:58AM

Facebook update [pic] from Help Anton

via Help Anton http://ift.tt/1i2Dgwm September 11, 2015 at 01:58AM

Facebook update [pic] from Help Anton

via Help Anton http://ift.tt/1NllDDU September 11, 2015 at 01:58AM

Facebook update [pic] from Help Anton

via Help Anton http://ift.tt/1NllDDQ September 11, 2015 at 01:58AM

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