Just realized on the car ride home from NYC with Abbey that today is the 70^th day since that first night in the emergency room in March. For the majority of those days Faith has been heavily sedated or just not Faith. I MISS HER.

Plans for DAY 39

• They will continue to slowly wean ventilator assistance
• Continue dialysis
• I will stay home for the day with the other kids. Sue’s sister Karen and Mom will be with her all day. Karen is returning to California on Saturday.
• They added back one of her favorite sedatives and she seemed much more at peace today.
• Rest & Heal

Everyone asks, so what’s wrong with Faith. Here is the best explanation and chilling conclusion of I have seen to date written by her primary care doctor in the ICU (emphasis added by me).

Faith is an 8 y/o child with Down Syndrome who has spent most of the last 2 months in the PICU at our facility. She was originally admitted for severe obstructive sleep apnea that was complicated by acute respiratory distress syndrome following an emergent tonsillectomy done at an outside institution. She was transferred here for a higher level of specialized care and has subsequently developed numerous complications including extensive pulmonary emboli, septic shock, severe respiratory distress syndrome, and renal failure. She remains extremely ill on high ventilator support and dialysis. If she recovers from this illness it will require months of care and extensive rehabilitation to get her back to her prior condition.

We have been blessed to cross paths with many exceptional people in life, My answer as to why is below.

1 Corinthians 10:13 No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.

• Stable night
• They have been able to slowly back down on ventilator assistance, Faith is cooperating.
• They are going to reevaluate the sedation plan as she is becoming aware enough to fight back, when she needs to relax and cooperate.
• 1.5 : 1 nursing 1 full-time of course with help as they day goes by.
• Total of 4 units of platelets. The CVVH machine has a filter that the platelets tend to cling to thus the need for supplementing.
• She has a rash, similar to hives. Dermatology thinks it might be allergic reaction both they and Infections Disease (ID) are looking into it. Not worried.

Baby steps forward

• 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.