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DAY 28 – CPMC/CHONY PICU

May6

Good Day – No adverse events

Faith continues pretty much the same as yesterday, no better, no worse. She continues to have fluctuations in her psO2 and blood pressure. The good news is she is only on 35% supplemental oxygen along with 5% Nitric Oxide (NO).

Monday (5/7/12) is going to be a busy day:

  • The ICU team will be meeting with the Pulmonary Hypertension (PH) team and the Pulmonary team to determine what to do next. There is no PH diagnosis at this point just the fact she is acting that way in certain aspects.
  • They will be performing a bedside agitated saline echo cardiogram . They want to determine if any shunts exist either a pulmonary shunt or cardiac shunt. Each would indicate there is an abnormality in either system.
  • Presuming the aforementioned test is negative the next test they would like to perform is a CT pulmonary angiogram to further study the pulmonary embolisms and their progress, etc.
  • Presuming the aforementioned test is negative the next test they would like to perform is a VQ Scan this test will let them know two things. 1) Is her blood properly perfusing into the lungs 2) Are her lungs properly ventilating. Incidentally Jonathan has had at least 3 of these tests in his life. The reason they are leaving this one for last is because it is in another hospital on the CPMC campus and she isn’t too portable these days.

We can’t say they aren’t asking the right questions, we hope we get the answers we want.

DAY 27 – CPMC/CHONY PICU

May5

Good Day – No adverse events

Faith had an improved day today, less support and better vitals. Still negative on all cultures so I think it’s safe to say the infections are finally under control. There are still some daily fevers which don’t make sense one explanation is drug fever especially when you consider fentanyl withdrawal and all the antibiotics she is receiving.

Something is working because even after suctioning today she is NOT having the low O2 saturation she has been having over the past few days. Was it the new ET tube, Nitric Oxide? We will see as the NO gets weaned if it was the cause or if it was replacing the time-worn ET tube.

Lets hope we are done adding days to the bad bucket and continue to accumulate them in the good bucket.

I’ve added a photo gallery there are some cute cards up there right now and I hope to get some more happy healthy Faith pictures up there soon too.

DAY 26 – CPMC/CHONY PICU

May5

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.

DAY 25 – CPMC/CHONY PICU

May3

Uneventful day yesterday, but another Faith & Daddy night and busy day!

I will avoid the details as best I can and try to summarize.

  • Lots of oxygen in but not so much was absorbed. In order to keep her at 90% blood O2 levels they needed to put the ventilator at 100% O2. Way too high to maintain.
  • To add to the tension in the room her blood pressure also began to drop once again.
  • The basic problem is this, too much fluid (edema) in the lungs makes it difficult to properly process oxygen. Taking too much fluid out of her (via urine and lasix) reduces her vascular volume and therefore blood pressure.
  • We need both A) reduce edema in lungs B) keep blood pressure C) keep her sedated which also lowers her blood pressure. The compromise right now is to use a vasopressor (Dopamine) it helps give her vascular system a squeeze which raises blood pressure without adding fluids.
  • To help keep the lungs clear they use chest PT  she also has a new bed that can perform percussion to also help keep the junk in her lungs moving and ready to be suctioned out. This is in addition to the therapy performed by her nurse and respiratory therapists.

    Those two roads rarely meet!

  • Faith also had a PICC line placed today that will be used for IV access in and out of the hospital for long-term antibiotic therapy and whatever else will come along.
  • Sedation also went up today as her emotional state affects her cooperation with the ventilator and don’t you know “little Sue” is holding her breath and biting the tube feeding her air as a show of her displeasure at times.

 

 

 

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 24 – CPMC/CHONY PICU

May2
  • Little fevers today. Chilling on the chill blanket keeps them under control.
  • Still negative on the cultures, which means the infections are still responding to antibiotics
  • Lungs are still too wet for extubation, might be a little bit of pneumonia. More time to get her optimal for breathing on her own again.
  • She is a bit more awake today than yesterday, she had a relatively easy night. They did chest PT every couple of hours to move secretions around and keep her lung clear.

An overall uneventful day (that’s always good). More good news tomorrow.