Tag Archive | Bad Day


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


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.


Eventful day – sorry for the delayed update, too tired to compose thoughts.

Faith had a good morning but continued to have periods of low psO2. Some could be explained like right after suctioning her ET tube, others were occurring for no reason at all. While suctioning her ET tube they were encountering resistance. Initially it was thought because she was biting down on the tube. My finger between her teeth confirmed she was NOT biting. The tube had developed a kink in it.

It was decided that the tube needed to be replaced to one again assure a patent airway. It was done without delay or complication. Afterward the stress of the procedure made Faith’s rebound even tougher than before. Her psO2 levels were in the 70’s, then low 80’s even with 100% O2 being provided by the ventilator.

Very fortunately Dr. K was there also and suggested Nitric Oxide (NO). The uneducated parent had suggested it the morning before at rounds but… They did order an echocardiogram because the primary indication for the use of NO is in pulmonary hypertension, the echo does not indicate it. On her previous admission for pulmonary embolism (PE) NO helped her when she was having low psO2. After starting the NO her saturations returned back into the 90’s and at last report from Sue @ 1:30AM she had a ps02 of 95% with the ventilator providing 45% O2 (twice the level we all get by just breathing room air). In everyone’s opinion its great based on circumstances.

It’s safe to say that extubation is a ways away. We know that the upper airway is NOT the issues as the ET tube bypasses that completely and insures a patent airway. More investigation needs to be done into what is happening with her lungs. Did the sepsis cause damage? Does she have pneumonia? Is it a ventilation issue? Is there some underlying congenital lung issue or is it just idiopathic?

Time will tell but it’s safe to say this is a few steps back, or maybe its a step in the right direction? Too soon to tell. Sue is with Faith now and I’m back home with the other kids, this week worked out well and we might take on this new regimen of one week on one week off from 24/7 PICU duty for each of us.