• It was decided just as I was about to go home to the other children that it was time to put Faith on dialysis (CVVH). They needed to start yet another central line so now she has one on both the left and right of her neck. Through it blood is both extracted then filtered and then returned. It has two lumens (passageways) so one is in and the other out. The machine she is hooked up to will filter her blood continuously. It may take weeks for her kidneys to heal if ever. We pray they will return to full or partial function and the likelihood is usually high.
• We are going to try to resume our “normal” where one parent stays with Faith 24/7 and the other commutes during school hours so one can always be home for the other three children. It is so very hard being so far away when mere minutes could be life changing. I write this on my first night home in a week at 2:30AM. I cannot sleep nor do I want to. Our daytime nightmare is beginning to enter our sleep.
• We are two days away from our 10^th week since Faith became ill and are prepared to push on for 20 more if that is what it takes!

Keeping the Faith!

*** UPDATE 4:27PM ***
Starting procedure to get dialysis started
***

They are pulling back on medications that don’t seem to have any effect on helping her kidneys produce urine. The less fluid in that isn’t helping the better.

The decision to go on dialysis is almost all but made at this point, the question is time 12 hours from now 24, 36? The extra fluid is now contributing to ventilation issues and there is only so much more they can go up on ventilator and O2 support. It would be so much better for her kidneys to do it on their own but it is looking more and more unlikely. How long will they take to heal? Weeks is the best and only answer if they will ever heal.

Keep the Faith!

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.