Exhaustion got the best of me and I passed out earlier at home so that’s why I’m so late in getting you more news.

  • Faith tolerated the move onto CVVH Hemo Filtration (aka dialysis) very well, no adverse events or reactions. They have been able to pull quite a bit of fluid from her.
  • The challenge now is dialing in the machine to fit Faith. There are no clear rules on what works it’s a very individual thing and is based on her response to the changes in body fluid.
  • She did have an episode last night where she needed more fluids rapidly to bring her blood pressure (BP) back up but it is not unexpected. With time she will reach equilibrium and the CVVH machine will continue to work as a third kidney.
  • Her own kidneys are still producing very small amounts of urine. A good sign, that even with CVVH they have not completely shut down. We pray for return of partial function and will be blessed if she returns to full function again one day.
  • She will be receiving blood products as needed. The CVVH machine’s filter tends to collect platelets and then she will required good old red blood cells to help replace losses for various reasons and they bring the oxygen around her body. Don’t worry the blood bank has everything she needs. If you want to help replace what she uses and what others may need see below, it won’t go to Faith but even complete strangers are helping her now with the gift of life.
    • Community Blood Services Paramus, NJ
      One donation can save up to 3 lives there is always a desperate need for blood and as the summer months approach even more so.

She is a very, very sick little girl. Progress is slow, but it is progress. Pray for her and her brother and sisters. They know she may be actively dying and realize we may not get back the Faith we know but we will always love the Faith we have.

Our journey continues for as long as it will take.


6 thoughts on “DAY 36 – CHONY PICU – EVENING

  1. All the girls at HiLites are praying for Fairh and thinking of all of you. The kids are always welcome to get dropped of at the salon and “hang out” if ever needed. Take care.

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