Claire finished off her IV steroid infusions on Saturday. We took turns with the kiddos coming along with her on Friday and Saturday. Benson got to come on Friday and Mabel on Saturday. It was fun for the two kids to have some one-on-one bonding time together. They all feel a little spoiled as they cuddle together in warm blankets, two pillows for a back rest, movie in the player and crafts on the table, and a handful of snacks they gathered from the nourishment rooms. And to top it off, they loved the idea of simply pressing a red nurse-call button on their bed remote and someone comes right to their service to say, "what can I do for you?" "More saltines, please," was Claire's usual reply. ((she probably ate the equivalent of a whole box of those over the past week. She loves them!)) That's better service than they get at home, by far!! But beyond that, everything went well last week. Claire's IV lasted the entire week which we were grateful for.
And then there's the mini-miracle story with her IV that happened on Friday. The doctors had ordered some labs to be drawn for Claire on Friday. We had tried to draw blood off Claire's IV on Thursday for another purpose, and the IV wouldn't not give us any blood in return. It worked good for infusions but didn't give any blood return. Claire didn't know we were doing labs on Friday, and when she found out when we got there, she was pretty upset. She did NOT want to get poked again! The nurse said she would definitely try to get blood from her IV, but that if it didn't work yesterday, it was most likely not going to work today. I knew that was true from past experience with IVs too. Claire was not happy at the prospects of being poked for blood when she already had had an IV in her arm for an entire week. So as the nurse was out getting her things prepared, I invited Claire and Benson to say a prayer...pray that Claire's IV will work and give us the blood we need so she won't have to get poked again. We each closed our eyes on that hospital bed and said a prayer. It was simple. But it was filled with faith. After praying, Claire was distracted for a minute or two, but then started getting upset again about potentially having to be poked. I told her that the fear she felt needed to be replaced with faith. Have faith, Claire, that Heavenly Father can and will make your IV work. I needed to hear that myself, because knowing the realities of how IVs have worked for her in the past, I knew, as the nurse said, that it wasn't likely that it would work for blood today. But together, we replaced our fear with faith. Claire and I changed our focus and we started imagining blood coming out of her IV. We were ready to see the miracle.
And so we did. The nurse was shocked. She didn't have any of her syringes opened/ready because she really didn't think she was going to get any blood out of it. I helped her with what she needed and she got all the blood she needed for the labs. We were so relieved. So grateful. It may seem simple, but to us, it was a mini miracle and a faith building experience. God cares. He knows. He wants us to ask. He's ready to bless. I'm so grateful my children got to experience that for themselves, first hand. They said the prayers. They had hope and faith. They saw the miracle.
After the nurse left, we paused the movie and Benson, Claire and I each closed our eyes and said a prayer of thanks. We were blessed. We are blessed.
Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.
Monday, March 10, 2014
Subscribe to:
Post Comments (Atom)

1 comment:
I am so glad you had a miracle! Lets keep that going now shall we? :) I send my love!
Post a Comment