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

• 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.

Somewhat better of a night than the night before but still having respiratory issues. We know it’s not her upper airway as that is bypassed. She is requiring much more supplemental O2 at night than in the day.

Basically her lungs are still sick and need time to heal and time to get rid of the fluid she has on them. She has spent most all of the day very sleepy and sleeping. She’s fighting a good fight and I’m glad she is getting the rest. You can tell from her heart rate that she is much more at ease today than yesterday.

The Good news:

• Infectious Disease (ID) has now confirmed that she has been running negative cultures for the past several days for BOTH infections. The positive the other day was FALSE and due to contamination. This means the clock for 6 free days of infection is closer rather than reset. We should know definitely in 72 hours.
• So far today NO fever
• Hematology gave her a clean report on the genetic testing they did that would indicate any genetic basis for a clotting disorder. The good thing about that is the clots she had were just an anomaly and not something we need to worry about for life. She has already completed one month of the three months of injections she needs for it so many steps ahead on that one.

Tender Jesus, meek and mild,
Look on me, a little child;
Help me, if it is Thy will,
To recover from all ill.
Amen.

• Today is not the day but this week should be the week. Faith had some more breathing issues overnight. A combination of things, infection, sedation, stars out of alignment… She is much better this morning.
• She still has her infectious personality and the infections to go along with it. Waiting to hear back about yesterdays cultures. They are going to remove the IJ central line. It is a known source for infection and not compatible with the aforementioned ethyl lock they had hoped to try.
• She did have her central line removed today and three other IV’s started to take up the volume of medications she is currently on. It was hard work for her to get all those sticks today but necessary to get her well, she was a trooper.
• They bumped up her sedation a bit. She was working to hard against the ventilator last night and since we are going to be on it a few more days she needs the rest.
• Still having fevers today
• Hoping for a good night and better days to come.

Dad and Faith survived another Friday night Saturday morning. No surprises this weekend, a good nights rest for both of us. Mom and Faith had Saturday together now I’m back for the week.

• As her heavy sedation comes off she is more and more interactive. Did I mention she wants MILK, she does every chance she has. She is also getting fresh, every time they need to suction her ET tube she bites down on it and either prevents the suction catheter from going in or coming out. Of course when she stops it from coming out she isn’t breathing either so some extra sedation is needed for now.
• I was going to report that her infection was well under control and they were even able to stop one of the antibiotics but that changed on Saturday. They took a culture from her IJ central line that came back positive. They are going to restart the second antibiotic again and also do a procedure called an ethanol lock to help prevent infection of the central line. Guess we just reset the clock on the six weeks of antibiotics.
• She received some red blood cells today. Her counts were low and she just hasn’t been able to keep up with producing enough on her own with all that has been going on.
• Still having at least one fever each day that responds to countermeasures, not sure if it’s in response to infection or just because she is having trouble regulating her temperature in this environment with all that’s going on.
• She is much more awake, mostly cooperative, today and had a good visit with her sisters and got to visit with Jonathan yesterday.

The “plan” is for extubation tomorrow. 50/50 chance of it happening. She still has some fluid on her lungs and needs higher vent settings because of a little bit of collapsing in the bases of her lungs. Not uncommon for being mechanically ventilated, on your back and not taking deep breaths. Today’s attending doctor is very proactive and wants to align all the stars in her favor for success.

Yiddish proverb

Mentsch tracht, Gott lacht. Translation: Man plans, God laughs.

All in his time…