Not Making Memories

Alec continues to make good progress and he may be off the ventilator as early as tomorrow.  Although his chest X-ray is showing little day-to-day improvement, he is weaning off the ventilator well.  They continually dial back how much support he receives from the vent and he continues to do more of the breathing on his own. And his blood counts are great: he has a fully functioning immune system again.

He is more alert and interactive when he is in more of a wake state.  We can ask him yes or no questions and he responds.  He cooperates well

Alec insists this is not his good side.

during oral care too.  But he’s not fond of having his picture taken.

However, because of the sedatives, he can’t make new memories. I finally figured out to ask about that yesterday.  They had told me that he won’t remember anything about his time on the vent later. Yesterday any time he woke up, he would feel around his face to touch the different tubes and the nurse would say “You have tubes there to help you breathe, sweetie.” After a few time through the same routine I thought to ask if he remembers anything day to day.

So it’s like the movie Momento: every time he falls asleep he doesn’t even remember what happened before he fell asleep.  I got a good routine going last night with him during his more awake times.  He’d wake up with a look like what’s going on? and I’d say “you’ve got some tubes here to help you breathe, and here’s your fuzzy, and Daddy’s right here with you.”  He’d look at me as if to say oh, okay and fall back asleep.  And five minutes later he’d wake up and look at me again, what’s going on?

There are actually advantages to this condition.  Grandma made a Thomas the Tank Engine card for him, and it is a brand-new surprise every time he sees it.  I put a Percy engine in his hand to hold so he doesn’t fiddle with tubes and wires, and he gets to be repeatedly occupied by What’s this? Oh look, its Percy. I also play some Bach cello suites for him on a portable stereo and he doesn’t get tired of hearing the same ones over and over.

The other change is that his oft-promised boots finally arrived. (The boots help keep his ankles in a good position when he begins walking later.)  The physical therapist told me the boots would be here “tomorrow” about six days ago. I started to complain a bit during morning rounds to see if we could track them down and they happened to arrive while we were still standing around talking. They are green, so I’m calling them his elf boots.

These boots aren’t made for walking.

Speaking of morning rounds, it was a good joke around here that I missed the meeting yesterday.  I’ve arrived every single morning by 8:30, and rounds have consistently started for Alec at 10:30. I always attend rounds, take lotes of notes, and ask lots of questions.  Yesterday was my brother’s birthday, though, and I treated him to breakfast and took my time getting ready. “They never get to Alec early,” I said.  But I got to Alec’s room at 9:15 and they had just finished rounds without me.

I came back last night for a couple hours to sit with Alec after the shift change, and even the night nurse said, “I heard you missed rounds this morning!”

Forward Progress Today (Except for Me)

Alec’s morning chest X-ray showed a slight improvement over yesterday, the first such improvement since we’ve been here.  The ARDS shows up as cloudiness over the whole image, but some of the areas were a bit clearer this morning compared to yesterday.  Overnight and today he also did more coughing on his own, especially during the lung treatments. They encourage natural coughing because its better for him to remove fluid on his own rather them doing it artificially. It’s hard to watch, though: the tube blocking his airway makes his cough sound like gremlin growls.

The nurse backs off his sedation from time to time to let him cough a little bit and then bumps it back up again.  He coughs well and the nurse can suction out a good amount of fluid, and then she increases his sedation and he rests comfortably.

They are making little adjustments here and there to his other medications to work on his levels, especially related to his nutrition.  They added lipids to his I.V. nutrition and cut back on some of the dextrose. A sonography technician took a closer look at his kidneys with a more detailed sonogram in order to assess his blood vessels and didn’t find any problems.

The oncology team said his white counts and ANC are finally rebounding.  They are halting the neupogen so that his counts don’t go up too fast and trigger more inflammation.

A physical therapist came by again too to do some limb movement and evaluate his joints.  His ankles are just starting to get tight, and he should have his support boots by tomorrow.

Because of the quiet day, the nurse and I were able to take care of a lot of little details.  His diaper rash is finally healed.  He has a loose tooth that we checked and it’s still just a little loose.  There are pads adhered to his cheeks to keep the tubes in place and we checked as best we could and he’s got no contact rashes going on (lots of steroids help with that).  The nurse showed me how to stroke his face because a lot of kids feel itchy on their faces and some stimulation there helps cut down that feeling. And he got a good wipedown bath in the bed too.

Another stat that is improving is his oxygen mix in the ventilator.  Too much oxygen in the mix for too long actually damages the lungs.  The nurse weans him off the added oxygen gradually to see how low it can go before his stats drop.  They try to do everything they can to get him off the ventilator as soon as possible. Since I’ve been here today, his oxygen mix has gone from roughly three times the oxygen in normal air to two times.

The ventilator also measures two kinds of air pressure, first the amount needed to keep his lungs inflated, and second, how much he needs for inhaling and exhaling.  The inflation pressure is relatively the same, which is typical: he had partial lung collapses from the ARDS.  But the machine is using very little pressure to help him breathe, which means he’s having an easier time. (The ventilator seems to measure about twenty different things, and I’m only just starting to learn about it.) Still no word on long-term recovery, but the progress he’s made since yesterday is really good news. Overall he’s still very sick, but today’s the first day he’s shown improvement.

One last thing they were going to do today was to cut his sedation way down for a few minutes to evaluate how his brain is doing.  Based on what the room nurse and I have been observing, though, they decided that he’s showing great mental function right now and they cancelled that test.  He’s frowning at me when he doesn’t like something, his hands sneak up toward his tube when he’s having an exam, and he was looking around the room more.  One time when the nurse was repositioning him, he squeezed my hand to brace himself. In fact, his personality shows up when anyone tries to examine his pupil response: he clamps down his eyelids.

Our social worker was disheartened to see him today.  We have two social workers who each work half the week.  By happenstance, there is one social worker we have worked with the most. When she was last on duty he was sitting up in his bed asking to go home.

I also got signed up for online access from Spectrum so we can view his lab results on the web site.  I think it may have been easier to sign up for Obamacare, though.  I had two false starts and some lengthy phone calls, and the wireless signal in the room kept dropping the whole time too, but I finally got it working.  I can review all his lab results, even from today.

Finally, I realized I made a blunder yesterday.  I didn’t sleep well last night and kept waking up thinking I was in the hospital instead of my brother’s guest room.  I thought I was just succumbing to all the stress.  The stress probably didn’t help, but it turns out the wonderful jasmine tea I drank all yesterday afternoon was black tea instead of herbal and I had effectively doubled my caffeine intake. Oops.