Along with the hemo dialysis Claire does at the hospital, we also do peritoneal dialysis on her at home every night. Jared and I trained at the hospital for about 2 weeks to learn how to do her PD dialysis. Claire has a catheter that goes into her abdomen (the one hanging down to the floor in the pictures). This fills up her abdomen area (rich with red blood cells) with a dialysis solution that dwells inside of her for an hour and a half. During that dwell time, an exchange of particles takes place-kind of like osmosis. The dialysis solution attracts the waste within her body and exchanges it for some good 'stuff'. Then she goes into a drain cycle. This is when all the waste from her body is then sucked out of her and taken to the drain bag. Then the whole cycles starts all over again. She is filled up with more solution, it dwells for an extended time, and then it is drained out. She goes through 7 of those cycles a night, over a 12 hour time period.
The great thing about it is that she doesn't even know anything is going on! She sleeps like a champ through the night! Our biggest problem is her getting tangled up in the cords as she tosses and turns. She also gets a tube feeding through the night via her stomach G-tube. She gets about 8 ounces of formula during this time. Again, just another tube we gotta keep straight!
One of the greatest downfalls of PD dialysis is that it puts a lot of pressure on her stomach. That solution pushes against her abdominal wall and makes her tummy feel full. Because of this, she is not hungry. 99.9% of what she eats she gets through her G-tube. Kidney failure in babies also contributes to this. So many things are controlled by the kidneys, including the digestive signals that tells you you're hungry. The docs tell us that once she's transplanted, she'll feel hungry again and will learn to eat. But for now, drinking water through a sippie cup and maybe a bite of yogurt is about all we can count on. Besides the 8 ounces of milk though the night, I also feed her about 12 ounces throughout the day in her G-tube.
5 comments:
She really looks great and healthy, considering! She is a cutie!!
Wow...she is getting SO big and SO cute...please give her a big hug and kiss from her Uncle Brice!
Can you imagine how different your life will be after she's transplanted?!? I am excited for you for when that day comes! Think of all the extra time you'll have on your hands! Claire is SO darling & it's amazing how well she does with everything that's thrown at her! What a fun, beautiful little girl!! If she tosses & turns anything like my kids do I'm surprised she doesn't pull everything out during the night!! I'm glad that she doesn't! How many times a night do you have to go "unwind" everything?!? What a challenging life you have right now. You are constantly in my thoughts.
I love & miss you guys!! =D
WOW!!! That is alot of supplies!! Funny how such a little thing needs all of those things huh? I hope everything is going well. You guys are awesome and she is adorable. Always has a big smile on her face, so cute!!!
Natalie, she's so beautiful and you have such an amazing attitude about this entire process. My mom and I were talking about what a great girl, Claire, is. It's completely miraculous that all of this technology is available so that she can get better and her life can be saved. But it's also miraculous that she is able to sleep for 12 hours and sit for however many hours everyday at the hospital. These are definitely tender mercies of the Lord. No baby that I know of can do these things, but I think Heavenly Father has blessed Baby Claire and you so that what needs to happen can take place. You guys were supposed to be her parents and she was supposed to come to you. I love you guys and miss you. We continue to pray. Know that we're thinking of you and your beautiful family!
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