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.

12 more hours behind us.
We pray for many more days of slow and steady progress.
More later.

We are still here. Faith had a roller coaster ride of a day.

Summary

• All over the place today high blood pressure / low blood pressure good saturations
• CT Scan of the brain to rule out bleeds and or trauma from the cardiac arrest was as negative as can be told at this point. We don’t know the extent if any of any brain injury that might have occurred. So far we are positive.
• Faith was moved from a conventional ventilator to an oscillating ventilator. Sometimes seen as a final desperate move by some or in some cases can provide an opportunity for very sick lungs to heal.
• They will be starting a continuous EEG monitor to keep track of brain activity. Two reasons, ensure we still have preserved function and secondly it is not uncommon to have seizures after cardiac arrest. Some are so small you can only see them with an EEG.

The staff here is preparing us for the worse. There are no DNR (Do Not Resuscitate) orders on Faith but we have all agreed that if she should have another cardiac arrest that they cannot resuscitate her in 20 minutes they will have already lost our little girl and no other extreme measures would be taken.

Some might ask how can we even think of this as parents. It’s the role and responsibility we took on when we accepted this child from God to care for them and do what is best for THEM, not US.

We have not lost hope, where there is life there is a chance. It has just been a very difficult 36 hours. We have urgently summoned our children and family here twice during that time because we thought her journey was near its end. We know Faith is still in charge in there because she has been fighting stronger than she ever has.

Every hour that goes by is one more hour towards a successful recovery. Sue and I will stay within feet of her until she is past this latest stumble backwards.

We have super children and they have all been very strong throughout this, I know the pain and worry they feel for their sister and am so proud of how they continue to push through and fight every day for her.

Today is going to be another very difficult day.

Nightmare

Faith was having a good morning. They changed her position from prone (on her belly) to on her back. That went very well. Shortly after as they were suctioning her, her O2 saturation monitor stopped recording, she turned blue and went into cardiac arrest at 11:55AM today. ICU teams are prepared for it and we were back in time to watch them doing compressions. They were able to resuscitate her quickly 2-3 minutes so we hope the damage done was minimal we will not know for some time how it affected her neurologically (brain damage).

They brought her for an emergency CT scan. No new clots have formed and the old one is showing signs of reducing. The theory is that a large piece broke off causing the cardiac arrest. The best analogy is that clots don’t melt like ice rather they breakup like river ice in chunks. Causing problems as they go downstream.

We will not know the full extent of the damage from the cardiac arrest for a while.

There is a very likely chance this could happen again, including the cardiac arrest, we just don’t know. One cardiac arrest increases your chances for another, Jonathan only did once when he was in his time so we pray she follows suit.

Family that could make it did today, we pulled the kids from school because we felt it was maybe the last chance they would have to say goodbye to their baby sister.

Only Faith and God knows what is to happen next, keep praying for what is the best for Faith.