Sorry, it's been so long since I updated everyone. I was just hoping to have more to update on. Kelsey is off the ventilator but she is still on the c-pap to help her breath better and they are giving her breathing treatments. We hope she will be off this soon. Her belly is getting a little bigger since the surgery but not nearly like it was. So, we hope this is a good sign. Also, her platelets were 135 yesterday a big surprise, we're praying they stay up and don't go down again. They will test again in the morning.
We did get the biopsy results but they didn't exactly tell us what is wrong. It did tell us there are a lot of things working right and it ruled out most things that could be wrong with the liver. It showed there was mild fibrosis and that some of the cell were dying but they don't know why???? The other thing it showed was that the liver is making red and white blood cells, which it shouldn't, and that is why it is big (too many extra cells). This is a residual effect of the myeloproliferative reaction which she had at birth and is common in babies with Down Syndrome. The blast cells are all gone but the side effect of making extra red and white cells is still around. So, the only thing wrong with her liver is this myeloid thing but it doesn't usually cause this much ascites (fluid in abdomen). There is nothing they can do to fix this, Kelsey's body is going to have to fix this herself. The liver is an organ that can repair itself. The doctors say it will either get better or get worst. We just have to wait and see. Back to feeling helpless.
They are going to wait on the heart surgery to see what the liver is going to do. They don't feel comfortable doing the heart surgery with the liver not functioning correctly. So, we are back to wait and see with the liver. We have talked with several doctors about the results and even got some input from a doctor at Children's. Please pray for healing for the liver and patience for us. There are some signs the liver might be getting better but they are very small at this time. We keep reminding ourselves God is in control and we know He loves baby Kelsey.
Thanks again for the support and reading our blog,
Patti
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Thanks for the update, Patti. See you tonight.
ReplyDeletePatti and Andy: Please know that your family is in my prayers. I have been on at the hospital the last 5 nights and had been checking for updates. Lots of hugs to Kelsey. Call if you need anything. Love, Lew
ReplyDeleteWe are praying for baby Kelsey.... We think of you often. Thank you for sharing your story with us.
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