Today started pretty slowly and William slept until 12:30 or so. Turning into a teenager already. He awoke to find that the mouth sores are worsening and officially in full swing, but this is to be expected. William didn't eat anything at all today, and only drank what was required to get his pills down. Since he is on IV nutrition, and in so much pain when trying to swallow anything, there is no expectation (or need) for him to eat for now. He also got his morphine dose increased to try to keep him comfy and got a suction straw for his saliva to avoid the pain of swallowing that as well. Another new toy to go along with the magic morphine button.
On the bright side, it appears that William has set a record today - his Doctor told us that he has gone longer than any other UCSF neuroblastoma bone marrow transplant patient without spiking a fever. Today is 8 days post-transplant, and he has not had any fevers at all. Pretty remarkable since he has absolutely no immune system. Go William! Hopefully we'll be setting some other records for going home the soonest, but we won't get ahead of ourselves.
William also got a few presents today - his first blood transfusion of this hospital stay (since he has no bone marrow, he isn't producing any red blood cells), and a package from Grandma Bennion with some fun presents to open up every other day as an incentive to do some math worksheets. It's working so far - he did his worksheets today so he can open up the first suprise tomorrow. If anyone is wondering what they can send, William doesn't really need any toys or food, but loves to get letters (see post from last week for address). We have enjoyed some really fun cards and letters (thank you all) and William has put them up on his window. It is amazing how quickly the last 2 weeks has gone by. Hopefully in a week from now his white blood cell counts will start to rise as his new bone marrow starts doing it's job. Until then, we wait, suction, and press the button (the Wii buttons and the morphine button seem to have similar effects)...
Still in our prayers! Sent a package and letters off yesterday! Hope you enjoy...there are some things for William of course, but a little Mommy doting too.:) Julie, you are amazing and your strength & perspective is an inspiration! Take care of you! Loves, some NC friends!
ReplyDeleteWe love talking on the phone and talking to Will. He really does have an amazingly positive outlook-and lots of fun comments. My happy button must be the cell phone to talk to Will, and the switch tha turns off the lights in the other boys bedrooms at night. They are fun and tiring and brilliant and mischievous etc. etc. We will be so glad when Will can partake of Grandpa's famous floats which the other boys enjoy so much! We owe you a few, Will. And by the time you come home you will be a wii master!
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