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…

Busy day today

• Faith continues her wean down from the heavy sedation medications (Versed & Fentanyl). They have added Precedex to keep her chilled out.
• She has been communicating, she wants milk, has told us to leave, to go get milk. Yes and no responses and tears when I say NO to milk. Mostly sleeping though, thank goodness.
• The infection we thought was just contamination, Nope it’s for real Staphylococcus epidermidis add one more antibiotic to the brew.
• We traded in some of our frequent ICU miles to get a better room that’s more private and quiet in the newer section of the ICU, it will be much better for her when she is finally fully awake. A lot fewer distractions and noise.

Today’s Hijinks (Dad is here tonight so what else would you expect)

• After moving to her new room she decided to drop her blood pressure again. Not like in the past when she was in shock. A little bit of IV fluids brought it right back and they also brought down the heavy sedation meds a bit more quickly.
• Another spiky fever again today, little over 100. Makes a bit more sense now knowing about the secondary infection. They are using a cooling blanket to keep her temp regulated. I’d love to have one on a cold winter night myself (it heats and cools to keep you a constant temperature)

Most of the weekend will be spent keeping her calm and comfortable. Extubation is possible but as one person told us extubation is the easy part, having the right person around if things don’t go right is more important. We would love to have her off the vent today, we can wait until Monday.

Sorry for the late update. Just cause one is in the hospital doesn’t mean the other three are any easier to deal with.

A very busy day for Faith with some acting up.

• Infectious Disease (ID) is satisfied with her progress thus far. She still had a positive blood culture but it took much longer than the previous one to grow. This is an indication of a drop in the number of bacteria and how virulent they are. The theory is that there are some islands of colonization in her various blood clots. As the clots dissolve they release bacteria/toxins and since they are clots it’s also harder for the antibiotics to effectively work on them. The short story is she is going to be on IV antibiotics for at least 6 weeks with all the fun of the associated PICC line.
• Fever of 103.1 (Axillary) today. Treated with icy rags (yup just what it sounds like). They also ordered a cooling blanket. It’s a water filled mattress pad that has an external device that can circulate chilled/warmed water to help regulate her body temperature. More kind than icy rags but sometimes old tried and true works best. Two possible causes for the spike were 1) Her paralytic agent (Vecuronium) was just stopped which is known to sometimes cause fever 2) Because the infection is still active she might have these spikey events for some time until it’s fully controlled.
• Much more awake now. She was able to talk a very little bit even with the ET tube in. Her words “Leave”, “Stop” & “Home”. They are afraid her sedation levels are too high to extubate as she might not have the drive to breathe on her own consistently. Our concern is she isn’t sedated enough to remain intubated. She may make the ultimate decision if that tube stays or goes.
• ICU vs. ENT – Our old nemesis “the tracheotomy” entered into conversation again last night sorta out of the blue. ENT is much more confident in a patent airway than ICU. As a “bonus” our least favorite attending (Mr. sit around as she decompensates) is back next week. We are working hard to move to the other unit for that and other reasons. The ENT surgeon spoke with Sue yesterday and will strongly advocate for a non-surgical approach to getting and keeping her airway intact and functional.
• I’m spending at least Friday night and maybe Saturday night with Faith again so who knows what hijinks she will pull this weekend. Historically the kids have always had their most memorable events (code for trips to the ER) on Dad’s watch. Guess they must feel more confident in my ability to deal with their childhood folly :-).