Ryan had a bad evening last night. The mucocitis has set in. His thoat is very sore and his lips are swollen a little. He was given some morphine for pain at 7pm last night. I thought it would put him to sleep, but it did the complete opposite..he was wired for about 2 hours.
He was talking in circles, and then he hold me he will never leave me. I said you promise, he said yes, but continued to tell me "but mommy I can leave you when I get married to a nice girl, right mommy" I tried not to cry, and told him yes.
I got an email from a friend of a friend in Milton who's little girl (Savannah) asked for donations for Ryan in lieu of gifts for her birthday. How amazing, a little girl who gave up her birthday gifts to give to an illness that has touched someone in her community...Savannah you are truely amazing. All being well ,I will see her on the weekend to thank her personally.
We also received a beautiful gift that was dropped off to the hospital last night, unfortunatley we did not get to meet the families, but thank them so very much for there kindness and generosity.
Two beautiful blankets with Ryan and Ally names on them and a lunch bag with Kayla's name on it... all in a beautful pillowcase with the the Hyland family embroidered on it, absolutely beautiful.
I spoke with my sister last night and Ally continues to do great, no isses with her lower back and seems to be healing nicely. I got to hear her voice on the phone last night, she is trying so hard to talk. I am so lucky to have such a great sister and brother in law who is keeping me posted on everything I am missing with Ally and taking such great care of her,while I am at the hospital during the week. I look forward to my weekends with her, to see her beautiful smile and to get lots of hugs. It gets me through to the next weekend. Ally I miss you so much, and know that you are to young to really get it, but know when you are told this story in years to come you would not have it any other way.
Today, Ryan woke up screaming in pain, both in his thoat and tummy. Another dose of morphine to ease his pain.He then realized a picutre that Michelle our nurse from last night made for him...Dinosaurs, lots of dinosaurs, he loved it.
Our nurse today, Gina has been in to inform me that Ryan will be in need of a blood and platlet transfusion today. So we start with Benadryl as Ryan reacts to platlets, then the bag goes up and then we will move on to the blood. Should be a busy day.
Counts this morning:
WBC - 0.1
RBC - 74
PLT - 20
Dave said to me on Saturday that it would be a very long week as he thought this would all set in. I was not so sure..I guess hoping he would not be in this much pain and the side effects would not be so servre.Dave you were right, it is only Tuesday and it feels like I have been here for a week.
Hopefully tomorrow will be a better day for Ryan.
Suzie
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So sorry to hear about's Ryan's pain. Hope that the doctors and nurses get it under control real quick and that Ryan responds well to the transfusions. If there is ever anything you need dropped off at the hospital let me know - work down the street - even if it is something to eat that's different than what is offered at the hospital.
ReplyDeleteElaine
so sad to hear he is in pain :(
ReplyDeleteWill the transfusions make any difference to his form? Maybe with the boost he may be a little better able to deal with it? Hope I'm right and not just grasping at straws.
no, the pain is from the mucocitis...It basiclly has rotted his gut and works its way up from there to his throat and mouth. He does not have a bad case so far..they say it will only disappear once he grafts and his white cells start to climb....I talked to our Dr. today, she said with a sibling match it usually takes about 2 weeks possibly 3 .....so we will wait and see..
ReplyDeleteHair should fall out at about 10 days post chemo...so that should be some time next week.
Talk soon
Thinking about all of you and sending all the best and most positive thoughts I can muster!
ReplyDeleteThis blog is so very helpful to keep all of your family and friend well wishers informed on progress.
Go Ryan Go!
Anne
As i have some dificulties in expressing myself in English, i will use the words of Anne " Go Ryan Go". Kisses from Portugal
ReplyDeletePaula