Today is going to be another very difficult day.
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DAY 31 – DAY – CPMC/CHONY PICU
Nightmare
Faith was having a good morning. They changed her position from prone (on her belly) to on her back. That went very well. Shortly after as they were suctioning her, her O2 saturation monitor stopped recording, she turned blue and went into cardiac arrest at 11:55AM today. ICU teams are prepared for it and we were back in time to watch them doing compressions. They were able to resuscitate her quickly 2-3 minutes so we hope the damage done was minimal we will not know for some time how it affected her neurologically (brain damage).
They brought her for an emergency CT scan. No new clots have formed and the old one is showing signs of reducing. The theory is that a large piece broke off causing the cardiac arrest. The best analogy is that clots don’t melt like ice rather they breakup like river ice in chunks. Causing problems as they go downstream.
We will not know the full extent of the damage from the cardiac arrest for a while.
There is a very likely chance this could happen again, including the cardiac arrest, we just don’t know. One cardiac arrest increases your chances for another, Jonathan only did once when he was in his time so we pray she follows suit.
Family that could make it did today, we pulled the kids from school because we felt it was maybe the last chance they would have to say goodbye to their baby sister.
Only Faith and God knows what is to happen next, keep praying for what is the best for Faith.
DAY 31 – OVERNIGHT – CPMC/CHONY PICU
Stable Night
Thank you to everyone who has cross posted and promoted this site, we had the highest number of visits ever yesterday. It helps knowing we are not in this alone and that there are so many praying for our little girl.
- O2 levels remained very good overnight. They have begun to wean the FiO2 (O2 supplied by ventilator) currently at 45%
- Still in prone position and seems to be loving it, most natural position for her.
- Blood pressures have been on the lower end and need some assistance from dopamine and epinephrine to bring them up.
- Fever still a problem. Why? Not infection.
Sorry for the picture but this is our reality.
More later.
DAY 30 – CPMC/CHONY PICU
Very Bad Day
About 8:00AM this morning Faith started to have a period of low O2 that would not rebound.
The next step they took was to “prone her”, basically take her from the position of laying on her back and put her on her stomach, it’s a much more complicated and potentially dangerous procedure than it sounds. It has helped somewhat but may only improve her condition marginally. They were considering using an oscillating ventilator which is only used in very critical situations and as a last-ditch effort to ventilate, that option is not off the table and it sits right outside her room ready for use.
Here is her current status
- Ventilator induced pneumonia
- Prone position to help with ventilation
- Spiral CT with contrast would help so much but she is in no condition to get one right now. It would at least answer “Is this fixable?”.
- Nitric Oxide levels increased
- Acute renal failure from ICU, antibiotics, sepsis, diaeresis. Still functioning enough and should fully recover. Worst case would be temporary dialysis.
It’s many many steps back from where we were and need to be. We try to remain positive and are more scared now than at anytime during this adventure. The kids are coming today to visit their sister before any more drastic needs are required. Sue and I will both stay here tonight and her sister Pat will be at home with the kids.
Many prayers are needed, we really don’t know where this is going to lead us our odds are 50/50 at this point but things are currently not getting better.
Every day, I need you Lord, but today especially I need some extra strength to face whatever is to come. This day, more than any other day, I need to feel you near me to strengthen my courage and to overcome my fear. By myself I cannot meet the challenge of the hour. We are frail human creatures and we need a Higher Power to sustain us in all that life may bring. And so dear Lord, hold my trembling hand. Be with me Lord, this day and stretch out your powerful arm to help me. May your love be upon me as I place all my hope in you. Amen
— Pope John XXIII
DAY 29 – CPMC/CHONY PICU
Good Day/Bad Day – Hard to call the day, you decide. Here are the details, see yesterday’s post for details about the tests.
- Cardiology decided that the “bubble test” aka agitated saline echo-cardiogram would not reveal any beneficial information. All of her standard echo’s were so good they can say with certainty there is no shunting.
- The doctor from the pulmonary hypertension (PH) team also reviewed all of the previous echo-cardiograms and said absolutely no to pulmonary hypertension. Just a side note the doc who is now an attending on the PH team was training as a fellow back when Jonathan was here and remembers his case clearly, kinda cool and scary at the same time.
- We cannot do a CT scan with contrast at this time because her kidneys are still recovering from sepsis and all the antibiotics she is on. Contrast would be too much of a shock to them and could cause failure. They are weighing the benefit of just a CT without contrast and what information that might contribute for the effort involved in getting one done.
- The “gold standard” V-Q scan also is a big logistical challenge and it’s not clear right now if the benefits outweigh the risks.
- Faith had a good morning getting her FiO2 (the amount of O2 the ventilator is providing) was all the way down to 30% when she got into one of her episodes where she could not recover and maintain her own O2 level. They had to go all the way back up to 100% FiO2 to get her to 90%. I can safely say we are now back down to 60% FiO2 and she is doing 95% so some good news.
- From an infectious disease (ID) perspective the nasty bug is officially under control along with the fungal growth. There is still a persistent Staphylococcus epidermidis that is still not fully under control. She is also still having spiky fevers.
Tomorrow is a bit more of the wait and see game and to hear back from pulmonary on what they would like to do.
I would also like to say a quick welcome and thank you to the Down’s Syndrome (DS) Facebook group. I posted a link to this blog there last night in the hopes someone else might have had or heard of similar circumstances and might be able to help, if this is something specific do DS. They have almost 4,000 members so you never know.