• Airway is stable and she is on a conventional ventilator again. Still lots of support from it but they have been able to slowly wean the support since midnight and Faith is agreeable.
• Blood losses are getting a little better.
• Nursing is 2:1. Two nurses, one patient. She is a handful. Just suctioning her ET tube requires 2-3 nurses and a Fellow and a Respiratory Tech if they are available.
• Increased the sedation to keep Faith more agreeable.
• Her room continues to get smaller, the walls are not closing in. Her stuff is expanding to fill all available space. Soon Sue and or I will be sleeping in the hallway outside her room. Hope this isn’t the week the fire marshal makes his walk thru.
• Blood pressures are up-down-up-down-up again that’s a job in itself along with keeping the CVVH dialysis dialed in right to take fluid off at the right rate.
• She is about 1,000cc’s down from her total of 5,000cc fluid overload so we are trending in the right direction at a good pace.

Everything can and does change so quickly. I will do my best to keep you all informed.

My day started back here with an urgent return to the PICU at 12:40AM. Faith had a major mucous plug in her ET tube that was not only making it difficult for the ventilator to get her oxygen but required two people to squeeze the AMBU bag to manually ventilator her.

They were able to get it clear but afterwards she would not recover on the oscillating ventilator, her O2 levels were still remaining very low. The decision was that since she responded to manual “bagging” that it may be time to put her back on the conventional ventilator again. They had to start her on VERY high pressures which can cause significant lung injury. Since then they have been able to reduce the pressure more and also the amount of supplemental oxygen she is receiving. So as of 3:00AM we can call her “stable”.

Her blood losses from bleeding around the catheter they are using for dialysis is significant. Since starting she has had to receive 3 units of platelets and now two units of packed red cells. They must keep her blood thinned for two reasons, we do not need further clots and the dialysis circuit will clot with blood also. So far the CVVH/dialysis is working and she is down from 5,000cc (5 liters) of extra fluid to 4,500cc in just a 24 hour period.

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!