Sorry to all for the late update. We sleep while we can and when things are good.

  • O2 levels in Faith are keeping at a good level even as they SLOWLY reduce the supplemental O2 she is getting from the ventilator. She has been as low as 50% FiO2 today and was able to maintain levels in the 90’s.
  • Suctioning her lungs has become less of a nail-biting breath holding adventure for us. It involves a lot more people now to do it but Faith is tolerating it very well and recovering from it quickly too. All very good signs.
  • Most of her lab work that we know of today is coming back good, there is some concerns about both kidney and liver functions, within expectations at this time.
  • The medications she has been receiving to help her keep her blood pressure up have been reduced significantly because it was too high. They are both at very low levels right now which means we have a lot of room for them to work if needed.
  • We have more of a major concern than the docs do right now about her kidneys. We have known there was a danger to them from multiple attacks. All of the medications she is on take their toll along with the contrast from the CT scan yesterday. She has not been putting out urine even after super doses of Lasix which should have her going like the proverbial race horse. She is holding onto about 4 liters of extra fluid right now and swelling considerably. As long as it stays in her external tissues and not organs we are OK. They will challenge her kidneys again tomorrow with Lasix and some other drugs and if she fails to start producing urine they will need to start dialysis. It SHOULD be a transient thing and maybe only need it for a week(s) while the kidneys recover. This is very common for the ICU staff so we trust them on it, she may just kick back in tomorrow and staring producing urine on her own time will tell. The priority has always been and in order BRAIN-HEART-LUNGS-KIDNEYS. We have the first three under control and safe now on to the fourth.
  • They have started the continuous EEG that should run for about 24 hours to ensure there is no seizure activity and as a double-check of brain activity.
  • More family in today from both California and New Hampshire.

The PICU staff setup Sue and I in an empty room two over from Faith’s so we could both sleep close by to Faith. We actually did get some sleep and showers and ate our first meal in two days. We were starting to look worse than the patient for a while. As you can see from the picture Faith’s room is getting a bit cozy and that’s before they added the EEG machine.

Slow and steady steps in the right direction, as long as it takes it will be done in HIS time.

Today’s leading graphic is thanks to Casey for the words and sister Abbey for creating the graphic.

Thank you to all who have visited and spread the word, we had 3,000 views of this website yesterday! Thank you all for your love for our little girl and family.

8 thoughts on “DAY 33 – CHONY/PICU

  1. Praise God Again for Good news!! Praise God for ALL the prayers and visits of concern to your site!! WOW!!! Faith’s wonderful loving personality contintues to just help spread the love she gives to others as she is so special to us all! The Power of prayer again and again is the most amazing thing. I tell every one I know that is a praying person on my passionate care and concern for Faith and I am not giving up on her and never will. Thank you Jesus for this miracle and continue to heal this little girl!

  2. Please continue to fight Faith you have no Idea how many lives you have touched with your beautiful smile . Will continue to keep you and your family in our prayers.

  3. Thoughts and prayers are with you and Faith at this time. I miss seeing her at CEL and look forward to her return! Peace be with you all <3

  4. Thinking of you & you’re beautiful girl Faith & praying for full recovery! Strength comes from within & from God & wishing you all that!

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