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Jaymun is now on +8 day after transplant. He received yet another platelet transfusion last night, the third since Sunday. Today he's getting a blood transfusion, as his red blood cell count is rather low. I wish I could tell you that he's his usual peppy self, but that's not the case at the moment. Every day he appears a bit more uncomfortable and his cries have become very weak and hoarse sounding. He woke up last night much more than usual and we ended up giving more doses of morphine throughout the night to help ease the pain. That little cry of his breaks my heart when I can hear how miserable he is!
His skin has begun to peel a bit and the spots where he received radiation are still quite red. He has special cream that I apply twice a day to help with that, but the effects of the radiation still make me wince a bit when I see his face in bright light.
Last night after his platelet transfusion, I looked down at him sitting in my lap and noticed that his entire head was covered with what looks to be a rash. This is a common side effect from the transfusions, called petechiae. He's had a few spots in the past on his face and neck, but nothing as alarming as the sight of his blotchy bald head last night!
Nosebleeds are still a concern...we have an issue of trying to keep his nasal passages clear so that he can breathe and eat comfortably weighed against the problem of causing more blood to flow when I suction out his nose.
His appetite is almost completely gone. It's very hard for him to eat now because of the mucousitis building up in his mouth and throat. He still makes a valiant attempt to try eating and so I keep offering him the bottle just to keep him interested. We're told that eventually he'll get back to eating when he feels better after this crummy period is over and done with. In the meantime, they give him a liquid diet through his central lines that keeps his weight up.
Now that all of the "bad news" is out of the way, I can say that he is still our happy Jaymun. Perhaps not as perky as usual, but he still tries to smile, even when it's apparent he's not feeling well at all. I love that he can toss some small grins our way despite his pain and discomfort.
On a bright note, we wish our Nurse Evelyn a very, very Happy Birthday today!! She deserves a day off and I hope she's enjoying her special day in whatever way makes her the happiest (hopefully sans nicotine, Evelyn!). She has been our favorite night nurse since the very first night of Jaymun's stay here, and we always sleep better knowing she's on duty. My favorite memory of Evelyn is when Jaymun's first round of chemo was finished and his blood counts were climbing high enough for him to come out from his room once in awhile. I walked out with him and Evelyn rushed up to us and said, "Would you mind if I took him and walked around with him? The other nurses haven't ever seen him before and I 'd like to show him off." I watched her carry Jaymun around to her friends and proudly introduce him to everyone, saying, "Look, this is Baby Jaymun. Isn't he just the cutest?" It was as if he really was her own baby--and seeing as how he's practically grown up here in the hospital, I'd say she has just about as much claim to him as anyone else does! We love, love, love you, Miss Evelyn!!
Dave has recently discovered how much fun it is to pick on Evelyn--now she has to enter the room carefully when he stays the night since he's pulled quite a few practical jokes on her already! (i.e., hiding under Jaymun's crib in the dark and grabbing her ankles when she comes to check vitals, balancing medicine cups filled with water above the door, etc.)
For the record, I don't think it's smart to mess with a nurse who is trying to quit smoking
AND has access to needles and syringes.
But that's just me...