Today’s vocabulary word: labile adj: characterized by wide fluctuations (as in blood pressure or glucose tolerance) <labile hypertension>

Faith continues to make baby steps forward. They are having some difficulty regulating her blood pressure. For reasons unknown she swings from normal to hypertensive or hypotensive without a known trigger right now. The dialysis is pulling quite a bit of fluid off of her and it might be related to the emboli or the original infection.

• They have restarted one of the antibiotics she was on because changes in her white blood count might indicate sepsis again.
• They have fine tuned her sedation medications to hopefully help with her blood pressure.
• They have been reducing the ventilator support and Faith is tolerating it very well, for the first time in a while they haven’t been chasing her O2 saturation’s up and down.

When I arrived home tonight I found a card in the mailbox from Faith’s best friend Casey and a note from her mom (I’ve edited the very personal parts out).

Sue & Joe, I had to share with you – Casey’s birthday is 5/19 she is not having a birthday party this year…one reason, Faith would not be there…but I came home from work and she had made a card on her own for Faith (see below) – well I cried – she said all I want is for Faith to be healed & come home & be all better – I don’t need presents. So her “birthday” wish & prayer is for Faith this year! Your daughter touched Casey’s heart from day 1 – when they met! She has always adored her (as I). I will never give up hope or prayers on Faith – she is a gift from God & her purpose is not done! I am so sorry for all your going thru bu now I have called in every resource possible for prayer!

Casey, Faith will get your card tomorrow morning. It will be proudly displayed in her room. You have so brightened my day and renewed my hope and faith in all that is good. I hope you have a wonderful birthday tomorrow and cannot wait till next years so Faith can celebrate it with you! You are such a true friend to Faith.

Phone report from Sue was that Faith had a good and uneventful night. I will be visiting with the girls after a doctor’s appointment for them this afternoon and evening. I will give you all a through update then.

So much for my day off. Poor Sue got evicted from our “room” at 3AM and tried to “sleep” in different areas without much success. She called me a little after 7 and didn’t need to say much, I knew where I was needed.

Of course last night and this morning were new nurses. The PM nurse had knowledge of Faith the AM nurse had never had her before. Once again we are at the point of frustration where not enough information about her likes and dislikes and what needs to be passed along again. Here is an example, we were sitting outside the room in the hallway. Both nurses were at her bedside, the new nurse and the newer nurse she was precepting. Suddenly we watched her O2 saturation rapidly dropping from 100% to finally 86% before we asked what did you just do. Their response was nothing except give her the Ativan she was due. I said you didn’t by chance “push it” did you? Her response, yes. Every nurse who has worked on Faith over the past few weeks knows that her Ativan and Methadone must be given via Syringe pump over 30 minutes (A machine that slowly injects medication into an IV line). This little bit of information wasn’t passed along nor was the medication order written that way.

We had another heart to heart with the ICU director about getting into a bigger room that can sustain Faith and a parent. We are currently unable to sleep or even sit bedside by her because of all of the equipment around her.

Our view of Faith's room. She's buried in there somewhere among the equipment and nurses

We also had a heart to heart with the nursing director about setting up our nursing bench a little better so we can have more consistency day-to-day with people very familiar with Faith and her quirky ways.

More baby steps forward and 1 week 1 day past the cardiac arrest so our tension level is a little better. Just a very frustrating and tiring day. Our friend Nina’s son Peter was extubated a day ago but as of 5PM they were going to need to re-intubate as he isn’t able to do it on his own even with the assistance of BiPAP.

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