Day -2 Today was seriously a great day. Anton didn't throw up at all today! I was exhausted because all these nights of not sleeping are catching up with me so we had a SLOW start to our day. I got to have more homemade food from the sweet ladies at our church!!! We finally started Anton's bath around 1 and had 2 ladies in here to help him relax and stay calm. He actually wanted one of them to take off his wraps while he was in the bath (she has worked with him several times and she is an rn). I told him that she was just there to help him relax but so said she didn't mind so i let her. This is the part where every EB parent gasps for air but I have learned if I am going to have enough energy to make it through transplant I need to accept help when its offered. I was right there watching the whole thing and she did a great job talking him through the process, the ladies sang to him, talked about his feelings and took breaks when Anton wanted to. It took a lot longer than when I do it but if Anton can learn to truly enjoy dressing change through what they are teaching him it is worth some extra time. Anton did great for all of that but by the time it was time for me to wash him his meds had worn off and he flipped. He tore a huge area of his side off because he was violently rubbing it. I had to hold his head against me, sing to him and wait till he calmed down so I could talk him through it. I was finally able to wash him but that part was pretty awful. I think Meghan and Tish will be very helpful in getting Anton to relax we just need to do his meds differently next time. He is terrified of the water but does great for the rest of it so we need to make sure we give meds right before the water part. Y'all might think I'm crazy for trying it again but they have worked with Anton several times and he is already using some of the things they have taught him to calm himself down when he is scared so I think its worth a shot. Once we got Anton out of his bath the rest of dressing change went great. They read him books, sang to him, and talked him through it when he was scared/in pain. After dressing change Anton played on his floor mat while I cleaned up. Then I put Anton in bed with his favorite movie Frozen (with a volunteer in here to watch him) and I went down and ate dinner while doing laundry. Who knew that could be so relaxing. Once I got done I came back up, got Anton in bed and I'm about to crash out. We have to wake up early so that Anton can go down to radiology to get his radiation. Then I'm sure we will come back up to the room and do a dressing change and then hopefully rest after that. - March 24, 2015 at 10:09PM http://ift.tt/1r2lUi4
1 comment:
I was at children's last night (3-24-15) to spend the night with my niece on the 5th floor-she was recently diagnosed with leukemia. I was checking in about 8:30 and think I may have saw you walk through the lobby pulling a large red rolling duffle bag. I was going to stop you but didn't want to frighten you since we have never met. I found your blog grouch Patrice Williams and have followed since before you brought Anton home. I pray for you all daily. Please post in comments if there is anything I can do to help you out while you are in town. Heidi
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