Faith is currently critically stable.  She is super critical but for the moment stable.

What started out as a better day than the one before ended at 4:59 when they were preparing to suction her ET tube and she went into cardiac arrest.  They were all there ready to respond and although they did chest compressions for 5 minutes they believe her circulation and oxygenation.  Her followup blood work shows she “tolerated the cardiac arrest well” even what seems like a statement of madness gives us some hope.

No we nor they know the cause of these arrests. For the moment we live minute to minute, then hour to hour and God willing day-to-day.  Only time will tell.  I’m starting to worry that my little girl is losing her fight.

Sue and I are considering relocating the family closer for the next few days.  We will both not be home, the kids don’t want to be so far away. I cannot make another 100MPH dash back into the city in case of another event.  We will try to make a plan if clearer rested heads prevail in the morning.

At 5:01 PM today Faith experienced another cardiac arrest. They were able to resuscitate her after 5-6 minutes. She is currently critically stable.
This is not a good sign for her overall prognosis. Only the upcoming hours and God willing days
Will determine that.
Please do not call or text for details. I will update the blog as I can.

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.