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 www.communitybloodservices.org
    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.

• 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