Joshua's "Juice bar" at the hospital today.
This has not been one of Joshua's better days. His fever is still with him. It got up to 101.8 this afternoon and is still hovering around 100.3 tonight.
He has lost four pounds in the last three weeks so we got a visit from the hospital dietician today. She gave us some ideas for getting more calories and protein into his system. He has not really eaten much the last two days. He has been complaining of a stomach ache and the normal dose of Zofran does not seem to be helping. Four pounds doesn't sound like much until you figure out that it is ten percent of his total weight. Its like if I were to drop twenty plus pounds in three weeks. How great would that be!! But for him not very good.
The Doctor started him on G-CSF (Granulocyte Colony Stimulating Factor) tonight. This will help his bone marrow produce more white cells and help raise his ANC faster. His ANC today had dropped to 45. The downside of G-CSF, it will drop his platelets down. No good comes without some evil, yin and yang personified.
They also are trying some different antiemetic drugs to see if they can settle his stomach and get him eating. We are back fighting the same battle again, trying to get food into his tiny little body and give him raw materials to build with. We will keep trying.
In general Josh was pretty miserable today. Jarrod Spent most of the day playing with him. Christian and Jamie stopped by as well. Jamie is getting her first ultrasound tomorrow so we will find out just how many grandchildren we are going to get.
The last anti-nausea drug that he got tonight knocked him out. I hope he can get a good nights sleep and start feeling better. Renee and I figure they will be at the hospital for a while. The house feels empty without the family at home.
But we are gypsies... this is how we live.
3 comments:
DAY 110!! =( Another sucky day. Im sorry Joshua that you arent having a good day. I hope that the new meds that they are giving you will make your appitite go up some love bug. You always seem to have a smile one your face no matter how crappy you are feeling. =) I really hope tomorrow you have a better day monkey butt. And it was great to see you mom dad and Jarrod!! I missed you guys. Tomorrow we find out how many we might be having.... Well i hope you and mom get some sleep tonight and we will be sure to see you guys tomorrow after the doctor. Keep your head up high Joshy you are doing an amazing job!! =) Love you
XOXO LOVE JAMIE BELLA AND CHRISTIAN
Joshua, we are so sorry that today was a bad day. That IV pole couldn't handle one more bag of fluid. Yet you still give us all a brave smile. You are so strong and have been handling all of this like the wonderful boy you are, I hope the new medicine helps you and gives you an appetite.
Jarrod, you are a most wonderful brother to Josh and I know he really is glad you are there for him. Renee' and Lee, I hope you're able to catch a little rest and wish you weren't back in the hospital gypsy mode again. We love you all and are doing lots of praying. Laura & Frank
Hey Snaggle Snuggle Monkey,
You are turning into the sponsor for "When life gives you lemons -- Make Lemonade"!
I am so sorry you are having such a rotten time right now. I just wish there was something I could do to make it go away.
I stay humbled and amazed at your strength and optimism. You are such a very brave warrior.
I cannot imagine being hooked to all those bags of fluids. It looks like they weigh more than you do. And I am depressed to hear you have lost so much weight because there is precious little meat on your bones as it is. I do hope the new meds they are giving you will help your appetite and your ability to put on, and keep on, some much needed weight.
Jarrod, my beautiful young man, you are absolutely too good for words! It makes me happy to hear and see how much you love your brother. Sorry your life is turned upside down along with Mom and Dad's. It will be worth it when this is over - but right now it really stinks!
Mary Fran sends her love to all of you. She hopes your life settles to a more reasonable pattern soon.
Tons of Love, Hugs and Kisses,
Nonna
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