Still slow and steady. Mom & Dad are not sleeping well. Too much good sleep the night before is allowing us to dream which is not a good thing right now, the nightmare of our days is getting into our sleep at night.

I’m writing this before rounds today so things may change, I will update you as they do. I did just speak with the fellow so my information is at least accurate.

• She was trapping some excess CO2 overnight. Simple biology you need to exchange both CO2 and O2 when you breathe. If you don’t the CO2 actually prevents the O2 from binding with oxygen. Her tongue is very swollen not allowing the CO2 to escape easily, the put a oral airway in which seems to be helping.
• She has needed more O2 overnight. Let me explain the most reasonable explanation why. 1^st as I mentioned she was holding on to CO2, that’s become much better. They measure all these things by taking an arterial blood gas. They do them very often. Well she has been loosing blood because of that alone and the portion of the blood that carries oxygen is called hemoglobin hers is low and thus her blood can’t carry as much. They are giving her a transfusion of more red blood cells right now (only her second so far) which should help.
• Some progress has been made with the kidneys if you want to know more about why they are not functioning as well as they should read about it here ATN. The good news is that she is starting to produce a little bit more of urine each hour. I can’t tell you if it is significant enough to make a difference yet as I don’t know. Lets just hope that slow and steady still wins the race.

If we can get through the day today on the same course we have been following I promised the other kids I would come home tonight. They need me and have been doing OK but it’s just not the same with both Mom & Dad away. We need to try to reestablish “our normal” as best as we can as soon as possible.

I will post more after morning rounds if it is significant otherwise again this evening. And we WILL be celebrating Mothers & Fathers day together when we are ALL home with ALL of our children.

“Faith is the strength by which a shattered world shall emerge into the light.” – Helen Keller

• Slow and steady progress. Better today than yesterday
• The doctors don’t feel they need to take any interventions today and that’s actually a good thing. Her kidneys are producing very little urine but rather than jump to dialysis there is time to let nature heal them which is always better than having to intervene.
• They are going to try one more course of a drug today that might help her kidneys to start producing. It operates differently than the previous drugs which no longer seem effective.
• Her daily X-Rays of her lungs is looking very good compared to many of the previous ones. It looks like the decision to move her to the oscillating ventilator was a good and right decision.
• More family visits today which are welcome but tiring.

Baby steps right now, but they are in the right direction. We will all feel better when we have about 96 hours under our belt since Wednesday morning.

We once again broke some new ground here at CHONY. After Faith’s cardiac arrest I went around the PICU thanking everyone involved for their contribution. The one I could not find was Dr. B, I was unfortunately there to witness him performing CPR compressions on Faith, something I would never recommend to anyone. At the time I focused on him and the determination and focus he had to save my baby. It was amazing, they all were. Later that day I ran into him in the hallway, reached out my hand to shake his and thanked him from the bottom of my heart for his dedication, skill and determination. It could have been his child on that bed you could not tell the difference. I also told him I know how difficult and important the chest compressions are. In my younger years I was a volunteer EMT and had the unfortunate opportunity to perform CPR dozens of times. It’s physically and mentally exhausting you have another persons life in your hands and they rely on your skill to do it right. Later in the day we were talking to Dr. K and he told us that Dr. B had approached him because he was so taken by the fact that a parent had thanked him for performing CPR on their child. It had never happened before. Why Not? We should always recognize the skill, contribution and dedication we see in all the people we encounter in life. I know that day I saw many professionals some younger some seasoned who will all one day be very seasoned lifesavers and touch the lives of countless other people. They need to be recognized in an environment that can be both physically and more so emotionally challenging. God Bless them all.

Thank you again to everyone for following and special thanks today to Pam, Jess & Nancy.

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.