Well things here have progressed to a new level. We started Claire on hemodialysis this week. Heavenly Father always knows best what we need and when we need it. And this is exactly it! Over the past few weeks, I have been able to connect with many families around the world whose children have the same disease and all of them have said, "you have to get your daughter on hemo! That's the only way to get her oxalate level low enough for her to remain safe!" After hearing that from families who have been there, done that, Jared and I called our doctors and told them that we wanted to start Claire on hemo ASAP. What a great perspective change we got, from really dreading hemodialysis, to embracing it 100%! So last Wednesday, August 6, Claire went in for her fourth surgery and had her hemodialysis catheter placed. She will do dialysis at the Childrens Hospital on Monday Tuesday Wednesday and Friday for three hours each day. Then each night we will still do the home dialysis for 12 hours while she sleeps, along with the 2/day dialysis exchanges. It is the ultimate dialysis plan, as our doctors like to call it! And so it is! It is definitely a challenge as I try to schedule everything as clockwork as it needs to be. But somehow we seem to fit it all in.
The biggest struggle I've had with all of this is what to do with Benson while Claire and I are gone 4 days a week 5 to 6 hours each day. Right now my sister is still staying with us so she has been able to stay home with him. I have been talking with friends in the ward and many of them are more than willing to watch him while we're gone. But I just feel bad leaving him! I know he'll be watched over and in someways it will make the time we do have together more meaningful. I'm sure it will all work out!
And so our new normal begins. It seems we've had a lot of new normal this past year! We are excited Claire is on hemodialysis. It was a little bit of a rough start on Monday. Long story short, and lots of crazy explanations aside, she ended up needing a blood transfusion Tuesday and Wednesday because she didn't have enough blood in her to start out with. And then hemo pulls 10% of your total blood out at one time to clean it. So she needed more blood initially to be able to tolerate taking the blood out of her to clean. After figuring that out the hard way, we finally got her blood level built up enough so she is able to tolerate things much better now. We are also giving her EPO (a medicine to help her body produce more red blood cells) 3 times a week so she will hopefully be able to create enough blood herself so she won't have to be able to do that every time. I am confident the nurses will get all the kinks worked out and things will begin to run more smoothly in the coming weeks. Claire still has a hard time going to the hospital. Just the looks of seeing a stethoscope, scrubs, and tennis shoes brings tears to her eyes. Poor little one. What a trooper! She has gotten more used to it though even in just the past three days we've gone.
New adventures. New challenges. New opportunities. Here we come!
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