-18 days pre transplant. We had a really good time last night/today visiting with Daddy. Evan even stayed here overnight! Deklan had a lot of energy and had fun playing with his toys and watching his favorite Turtle Tale movie over and over. He seemed be more smiley and silly like himself again. I think he was just as happy as I was to have our little family back together again! It has been hard to be apart. I cant believe it is going to be like this for the next 3 months or so. We are thankful that our house is close enough so he can visit us frequently. Deklan still had a lot of hives on his face (seen in second photo), but didnt seem too bothered by it for the most part. When it did start to bother him, the nurses would give him some Benadryl which helps makes his hives go away and also makes him sleepy. Evan and I even got to watch some tv shows on Netflix together last night as Deklan napped! After watching cartoons non stop for the past 5 days, I was so happy to watch something for grown ups!! Last night Deklan would not let me put him down in the crib. So we spent the night snuggling again. He tossed and turned all night. Just when I was going to try to figure out what was going on, he would settle down, so I assumed it was positional and went back to sleep. This happened off and on for hours. In the morning when the nurse came in to begin getting everything ready for his 4th and final day of getting Campath, Deklan was not happy. I could tell there was something not right. Since he cant talk, its hard to know what is wrong because there are so many different things going on. Was he teething? Itchy? Nauseous? Hot? Unhappy because the nurse was taking vitals? Hungry? In pain? I wasnt exactly sure. Until he started scratching his back and I lifted up his shirt. His entire back was covered in bright red hives (third picture). It finally made sense why he was so uncomfortable. I felt so bad for him. He was already getting Benadryl before the chemo, so once that kicked in the hives went down and he seemed to feel better. Poor guy. Deklan has spent most of the day today sleeping and watching movies as usual. Every time he gets Benadryl he usually falls asleep. So he is on nap number 3 of the day. Later tonight they will be giving Deklan IVIG. Which contains pooled IgG antibodies extracted from the plasma donated by over one thousand blood donors. It is the same thing that I was doing weekly and subcutaneously (under the skin) at home. The only difference is that IVIG only needs to be given monthly. We can do that now because Deklan has a central line. We were doing subq at home to avoid having to go into the hospital and have an IV put in. Tomorrow we will actually be discharged for 7 days and will be staying locally to the hospital. The reason for this is because they want to give the campath enough time to suppress the white blood cells, but they also want it to be completely out of his system by 2/12 (transplant day) so that it does not interfere with the donor cells. Since there is really no reason for us to be In the hospital while we wait, they decided it was best to discharge us. The less we are in the hospital, the better. I will still be administering the oral chemo every day (shown in last photo), and we will be coming in to clinic every day for blood draws and check ups. While we are at the Ronald McDonald house, I will be responsible for flushing his central line to keep the 3 tubes from clotting. If they clot, this would require them to replace the Hickman catheter in his chest. We want to avoid that from happening. So I get to add another thing to my long list of things I never imagined I would be doing. Perhaps I missed my calling as a nurse. Haha. :) Hopefully nothing will happen while we are out of the hospital. It makes me a little nervous not to have nurses and doctors around to ask for help if needed. But it will be nice to have a break from the hospital, and we will be close in case something does happen. Once we are re-admitted, we will be in the hospital for 4-6 weeks - until Deklan has engrafted (donor cells have entered the blood stream and have made their way to the bone marrow and have begun making new cells) and is stable. This can take anywhere from 10 days to 4 weeks post transplant. Even after the donor cells engraft, it will still be awhile until Deklans immune system is close to normal. I say close to normal because his immune system may never be as high as seen in children without SCID. But we just hope it will be high enough to give him as close to a normal life as possible. How long that takes varies from patient to patient. After the first 100 days post transplant, if he has no issues and no instances of graph versus host (where the donor cells attack Deklan) that require steroids, we should be safe to be sent home from the Ronald McDonald house. But we will still be on isolation for +/- a year post transplant as we wait for his immune cells to fully come in. It could be way sooner, or later than that, but that is what the transplant doctors told us to expect. How long all of this takes depends on Deklan. And if you havent realized already, Deklan is strong. So I know he is going to kick butt and continue to amaze us with his strength every single day. Please keep us in your thoughts and prayers and please keep sharing our story. Hoping for a quiet and restful night and a smooth discharge tomorrow! Next time I post, hopefully we will be out of the hospital and settled in our home away from home for a week! Thank you all for the love and support. Sending virtual hugs to each and every one of you. Glad to have you as a part of our extended family. :) #bringdeklanhome #teamdeklan
Posted on: Sun, 25 Jan 2015 23:56:12 +0000
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