Tuesday, October 6, 2015

Facebook update from Help Anton

Day +? I have no idea what day we are on... I was able to go to Ohio for the weekend to attend Abigail's viewing and funeral. I am so thankful I was able to be there and so honored that Jessica and Larry let me join their family in both services. My heart is just so broken over the loss of Abigail. I just wish the whole world could stand still so her family and friends can mourn her loss without feeling the need to do "normal" stuff. Abigail has changed my life forever and I am so thankful I got to be a part of her life. Please continue to pray for Abigail's family and friends. Jason, Kenya, Judah, and Anton hung out at the hospital over the weekend. I was a little nervous about how Kenya and Judah would act being in a hospital room all weekend but Jason said they all did great. Several nurses told me once I got back what a great Dad Jason was, how calm he was, and how he just played and played with the kids. I already knew this of course but it was neat to hear from other people. I'm so thankful he made it possible to leave for the weekend. I would marry him all over again :) A group of people ran this past weekend to raise money for EB Research Partnership. One of our friends Tona ran the marathon and gave Anton her metal because she ran for him. It was so good to see her and her husband for a little bit! The nurses on the BMT floor are wanting to learn more and more about dressing changes and how to do them. They are trying to take a more active roll in dressing change in case families need or want their help. One of our favorite nurses Katie came in last night and wrapped both of Anton's legs and his chest by herself while I watched/told her what to do. She did such a great job, I was so proud. If your kiddo is going through transplant, has EB and you are comfortable teaching them how to wrap let them know, they are wanting to learn. Update on Anton... He is still having fevers and they still aren't sure why. Dr. Miller is the attending doctor on right now and we love him! He has great bedside manner, is so kind and compassionate, and is working very hard to figure out what is wrong with Anton. We found out Anton does have Graft vs Host on his skin so he will start steroids today. This also means he has to stay on his immune suppression medicine longer. They thought tacro was causing his fevers but now he has to stay on it to treat Graft vs Host so I asked of we could go back on CSA just in case it is the tacro causing the fevers. I think that is what we are going to end up doing. I'm not sure if the Graft vs Host he had never went away even though we thought it did or if this is a new case of Graft vs Host. Either way Anton is in good hands and I'm very thankful we are being treated here. We are trying to go up on his feeds so that we can get him off TPN. I'm hoping we will be able to do this soon. Dr. Miller has Anton off of TPN for about half of the day to see if his fevers improve when he is off of it. Anton's sodium is back to a normal level but since they gave him more fluid then he was use to his breathing got much faster. He is back on high flow oxygen but they are in the process of weaning him from that. He has anywhere from 1 to 3 hours a day where he feels like talking and playing but other than that he just lays quietly in his bed and watches cartoons. One of his doctors told me how hard it is to see Anton this way and how sad they are all that he isn't feeling well. It meant so much to me that he told me this. We love Anton's team of doctors and are so thankful for the care he is receiving here! - October 06, 2015 at 12:15PM http://ift.tt/1r2lUi4

No comments: