Some Progress, Some Frustration

Alec has made great progress since we’ve been home, but it’s also been a difficult adjustment.  He’s now able to walk around the house pretty well and can get out of bed on his own fine, but his legs are still too weak for him to get up off the floor or out of the tub without help.

He’s also still tapering off the sedation medication as well as the appetite stimulant steroid and now he’ll also have to taper off the blood pressure medication so that he doesn’t get hypertensive. The biggest hurdle was getting his bowels moving again.  They had given him Miralax in the hospital and had overshot the mark and cleaned him out, and once he got home that all stopped again.  Because of his sore throat, he started on only formula at home and that with the blood pressure meds stoppered him up. We tried several days of increasing Miralax doses, but he was too scared to try after the trauma in the hospital at the beginning of his stay.

Laura finally tried a sticker chart (sit on the toilet for 2 minutes and get a sticker, get 5 stickers and go shopping) and within 90 seconds he was done.  Laura and I couldn’t talk, soothe, or coax him into trying, but a SpongeBob sticker did the trick.  He also walked the fastest I’ve seen him so far when I reminded him he forgot to post his sticker last night.

He was finally eating enough where we could pull in NG tube on Sunday, and he was happy to have all the tape off of his face.  I’m happy not to have to mix up any more formula, but we have two cases left so I’ll have to find somewhere to donate it. alec_noNG

Today we went down to the clinic to begin our long-term maintenance chemo.  The day did not start well; we had a lumbar puncture scheduled, and since that’s a sedation procedure, we have to be down there at 8:00.  I hit mile marker 100 on 131 at 7:30, and it’s usually about 15 minutes to the hospital from there, but today it took 45 minutes because of traffic.  I’m not sure why.  There were no accidents and no slippery roads, it was just cold and dark and busy.

After that, we got there and started an IV.  Since his port is not replaced yet, we needed the IV for the blood draw, chemo, and sedation.  He was upset as I expected; however, we hit the lucky combination of good vein and skilled nurse and it went right in on the first try without any moving it around.

But our luck ended there.  Just as the nurse practitioner was explaining the protocol, his counts came in and she said, “and we can’t start today.”  His platelet counts were too low.  They were 55 thousand (high for him) but they had to be 75k.  At first, they decided to run his monthly pentamadine (antibiotics) since we were there, but I looked in my notes and it had only been 17 days since his last one, so I asked to put it off and they did.

It seems that the clinic may have not paid close attention to some of his hospitalization.  The NP said she didn’t want to run a platelet transfusion because of his risk of reaction, but I reminded her that he had twelve platelet transfusions during our inpatient stay without any problem now that they are using washed platelets.  I’m not sure that information got through. In the clinic, we have a lot less contact with the staff, unlike in the ICU where I had daily meetings with the whole team working on his care, but we’re also at the clinic only a few hours rather than around the clock. It was also supposed to be a routine visit today anyway, so we didn’t have much face time with the decision makers scheduled in.

So we wound up with no treatment today, and we were out of there by noon, a wasted trip. However, he was thrilled to go to Toys R Us.  It was his first shopping trip since November.  We had a great time looking at all the Lego, Kreo, Cobi, thomas_spillsK’Nex, and Mega Bloks building kits. There were something like four aisles there. We were looking for more SpongeBob Legos, but they were gone, so we looked at the K’Nex Mario kits, and the Scooby Doo Cobi kits.  We took the wheelchair in with us, but he walked around to look at toys a few times.  He did lose his strength once and collapsed into a pile, but that didn’t dampen his fun.  We of course found a new Thomas and Friends kit to bring home.

Our other piece of good news: Make-A-Wish is starting to book his trip.  We got the phone call yesterday and we’ll be going to the Give Kids the World Village next to Disney World in early May.  They’re booking our plane tickets any day now!




We finally made it home last night.  All day the hospital staff went back and forth on whether everything would be ready, but at about 4:00 everything came together: we got our equipment and prescriptions and discharge instructions all at once.  We are very fortunate to have great health insurance so we are not often held up by paperwork.  Our social workers at the hospital are great as well and handle all of the insurance issues.

We brought half the hospital home.

We brought half the hospital home.

The biggest barrier was loading the car.  Between all of our stuff and all of the new equipment, it was a tight fit, even with our Forester.  Laura drove and I had to sit with a cooler at my feet and other stuff in my lap. We had to bring home equipment and supplies for feeding him via the stomach tube because he still would not even swallow a bit of water at the hospital yesterday and had not had anything by mouth since December 10th.

Alec had been really groggy all day, sleeping a lot.  He dozed in the car and I put him in the recliner when we got home. He got sight of his Christmas stocking on the mantle and pointed and whispered, “stocking, please.”  He opened his gifts in there and then had his first meal by mouth in three weeks: Pez.

First meal in three weeks: PEZ!

First meal in three weeks: PEZ!

I immediately got all of our medicines and equipment unpacked and figured out how to set up the tube feeding.  A man from the pharmacy had talked me through it at the hospital and I had written instructions, but it took me awhile to get everything going the first time.  I’ve never really mixed formula before and had to learn to do that. (Laura offered to help, having mixed formula many times in her past life as a babysitter, but I was too tired and crabby to let her.) The weirdest part about the feeding is I have to check his NG tube placement once a day: I put a stethoscope on his stomach, push a tiny bit of air into the line, and listen for a blurp. That way we know the tube hasn’t been regurgitated to the wrong place.

I also got trained on how to take a blood pressure reading with a manual cuff and took his reading. In addition to blood pressure medication, he’s taking an appetite stimulant and drugs to taper off his sedatives to prevent further withdrawal symptoms.

He had a really good night’s sleep.  He asked to get out of bed this morning and with my support he walked all the way from the bedroom to the family room.  He’s much more positive about being home this morning and also drank some water today.  He’s starting to talk more, using his voice, and as soon as his appetite kicks in and he starts eating more than Pez we can pull out the NG tube.

Asleep in his own bed.

Asleep in his own bed.

We’ve made it through his last intensive chemotherapy at last and next Monday start on the long-term maintenance phase. He’s recovered from the heavy-duty chemo, the infection, and the ARDS and now we’re recovering from intubation.  Our goal in the next week is to work on walking, talking, and eating.

Coming Home Today (Maybe)

Day 19 in the hospital, but it may be our last: the plan is to get him home today.  There are a lot of things to arrange, so I’m not sure it can all be accomplished today.  We’ll be setting up a lot of care from home, including:

  • Blood pressure monitoring
  • A walker and wheelchair
  • In-home physical therapy
  • Apparatus for using the feeding tube
  • New prescriptions

He also has to have his PICC line removed and I want to be sure to change all his tape and dressings.  The nurse practitioner on Alec’s case today assures me we can get this all done today and our social worker is setting up things through our insurance.

Yesterday Alec showed more improvement.  His lungs remain great, and he did better with walking and showing interest in things.  We played some Wii together and he started to use his voice when I annoyed him (“please play now, Daddy” when I left to use the bathroom).  He also started a little of our Super Mario Bros. banter, and even cracked a smile or two. He played with me until I had to quit because my thumbs were sore.

Serious Gamers

Serious Gamers

The Methadone/Ativan taper for his sedation withdrawal is going well, giving him relief from the withdrawal symptoms and a little extra sleep, and he’s started using the pee jug again, so we’re almost done with the need for a diaper. His ARDS (the lung injury) seems to be done.  He’s not had any trouble breathing at all since we left the ICU, which is incredible. His blood pressure keeps sneaking upwards, so we have to watch that, but he walked better yesterday, eschewing the walker altogether, and standing on the scale by himself, holding on for support. We usually have to hold him back when his legs aren’t doing well at home, so I think he will improve more quickly at home. (As I put it to the staff, he’s thinking why would I want to walk from one room I don’t want to be in to another room I don’t care about?)

Walkabout Sans Walker

Walkabout Sans Walker

The nurse spilled the beans about maybe going home today by talking about it in front of him, and so I talked to him about it after she left.  He was overwhelmed with mixed feelings for a second and gave me a good frown, but he seems happy at the idea, at least as much as he can be waking up from his morning Methadone nap.  I know from much experience in the clinic that “a short day” is usually a long day and a “break” from chemo usually means really sick (i.e., the last 19 days), so I’m hoping that they’re right about making it out today.

More Awake, More Withdrawal

Our days have become less eventful as we are finishing up the antibiotics and recovering from the ICU.  Last night he had another dose of Ativan to help with withdrawal symptoms and this morning his doctors started him on a drug taper, adding Methadone as well, with his first dose coming tonight (yep, the same stuff they use to treat heroin addiction).  The oncologist said he may have been having hallucinations when he had the worse symptoms yesterday and seemed to be trying to crawl under the bed.

Today was pretty low-key by comparison.  We’re watching movies, reading books, and showing some interest in toys, but not talking yet.  He did talk to the nurse in the middle of the night who tried to take his pulse-ox on his finger.  He likes it better on a toe and she wasn’t getting that so I woke up hearing him saying “no, all done,” using his voice.  I think that he forgot not to talk last night, and he forgot this morning that he can talk and hasn’t tried.  He won’t swallow anything either.  The Methadone will help with his throat pain.

Our other change today is that he tried out the walker and walked a few steps today.  He’s very unsteady on his feet, though, and needed help standing to get weighed.  Considering that only two days ago he didn’t seem to be able to move his legs at all, this is great progress.  We don’t know yet how mobile he will be when we get home, but the physical therapists say they will arrange for a therapist to visit us at home.  We may be coming home with a wheelchair and/or walker, unless he makes great improvements in the next couple days.

We had a visit today from the infectious diseases department who confirmed that he has to get antibiotics through the 30th, so that will be our earliest possible discharge date.  The respiratory therapists are checking in on him too, but he’s doing so well breathing that they don’t even listen to his chest anymore.

Thanks again to everyone for keeping us in your thoughts!


First time on the walker! (I think he was scared both of losing his balance and his pants falling down.)

Adios, ICU (Hello, DT’s)

Alec had his breathing tube removed on Christmas day.  When I arrived that morning, he was much more alert than before.  They had turned off two of his three sedatives.  I could tell that he was more aware because his pupils were dilated for the first time in a while instead of being little dots.

The lower sedation level proved to be a little problem before he was extubated.  While we were waiting for the doctor, he had some coughing and the nurse began to suction his breathing tube as usual.  But this time he panicked and started to struggle.  The doctor was on his way, and before I knew it, the breathing tube was coming out.

The Mayan Buzz Cafe is 100% awesome for being open on Christmas.

The Mayan Buzz Cafe is 100% awesome for being open on Christmas.

Despite that hiccup, Alec had a pretty easy time with extubation.  The tube came right out and he had some phlegm that needed suctioning, but then he seemed fine.  He tried to talk but his voice was very raspy, and he hasn’t tried since. But he immediately seemed much more comfortable and even started to nap.

Thumbs up for extubation!

Thumbs up for extubation!

He did so well that I still was able to go out to lunch. My friend Bob from college came in to town to take me to lunch. We had trouble finding a place open on Christmas, but ended up at the Mayan Buzz Cafe.  The Facebook page says that the Mayan is always open, and it was.  The owners were there playing checkers and watching A Christmas Story and greeted us warmly and made us sandwiches and great coffee.

Alec and I spent the rest of the day in ICU for monitoring, and he did very well with his breathing. They also began to remove a lot of his tubes and monitors.  The catheter came out along with his arterial line in his wrist.  He spent the rest of that day on Precedex, his last sedative, and the blood pressure medicine still has a little anti-anxiety effect.  He spent the day looking around, but not interested in anything. He tried a sip of cold water but his eyes got huge, so I think it was painful. Since he was extubated he no longer had round-the-clock staff in the room so I spent the night with him.  He spent the night not really sleeping but not moving around much.

Yesterday he was good enough to make the move out of the ICU.  They cut off his “dex,” his last sedative, and we began to pack for the move.  Physical therapy came by to assess him and to try out a wheelchair.  He could not sit up unassisted, and did not want to try to help the therapist make him stand.  He got into a wheelchair, though, and even though he didn’t like it, stayed there for a good half hour.

First time sitting up is scary.

First time sitting up is scary.

We moved up to the 9th floor in the late afternoon. It is much more spacious and quieter in the room up here, and we took a good nap together after we got settled. However, his Christmas tree had to go.  The 9th floor is the hematology and oncology floor, and they have stricter rules for cleanliness.  No foliage of any kind is allowed, fake or otherwise.  He was still kind of loopy, though, so didn’t seem to care. However, he started to let me play music for him which was a step forward in showing interest.  We listened to Mary Poppins broadway soundtrack and some of the Wiggles.  I also have a white noise/waterfall album that I put on the iPod overnight to help us sleep.

This morning he is continuing to improve.  He already did much better with the physical therapy: he was able to sit up unassisted (but with the therapist hovering over him).  He got into a wheelchair for awhile and then back into bed.  We were waiting for the oncology doctors to come around on rounds and Alec started to get restless.  His hands were shaky ever since being extubated, but it seemed to get worse.  He couldn’t get comfortable in his bed.  He needed to be cleaned up, so we did that, and he settled down a bit, but would not sit still for the nurse trying to change the dressing on his IV.

When the doctors came by, I asked about the shaking hands and they agreed that he was having some withdrawal from the sedatives and planned to order some Ativan.  After they left, though, he suddenly started to get much worse: the shaking was worse, he acted like he wanted to crawl under the bed, and he started to moan a little bit.  I rang the nurse to hurry along the medication and she was surprised how much worse he seemed.  The Ativan soon arrived and he fell asleep in a few minutes.

Later on, Laura came down for a visit.  Beforehand, I had him back in his wheelchair for more upright time and we actually started to watch some television for the first time since arriving back on the 11th. (Our usual progression of movies: Cars, Cars 2, Toy Story 3Winnie the Pooh).  Laura arrived and was upset at how altered he looked, but I knew from watching him these weeks that he was actually very happy and overwhelmed to see his mommy.  He still is not talking and afraid to try his voice because of the throat pain.

We've got wheels.

We’ve got wheels.

However, he settled down and we had some great together time for a few hours.  He opened some presents, showed some mild interest, and we all watched movies together. Laura got him to laugh a tiny bit and clearly smile, also firsts since extubation.  We also talked to the discharge nurse about the plan for going home.  We will be out of here by the 30th, and back in the clinic to start maintenance in January.  We may have some physical therapy after leaving, but I looked online and there’s a rehabilitation center at our local hospital just down the street. He’ll also come back for a new port sometime in mid-January.  When Laura was getting ready to leave he showed sadness on his face.  Hard for her, but actually a big improvement from sitting around all day staring blankly.

Later on, I moved him from the recliner to the bed and he walked with my assistance.  It was only yesterday that he seemed not to be able to move his legs at all.

Tomorrow we’re planning on some pain medication for his throat and an appetite stimulant so we can get off the stomach tube feeding and onto real food before we head home.

There have been a lot of hospital staff who do double duty on the ICU and the 9th floor.  Everyone who has seen him has said what a great turnaround he’s made from the ARDS.  He hasn’t had to have any supplemental oxygen or respiratory therapy since being extubated.  Now, out focus is recovering from the intubation.

A kiss from Mommy (but eyes on the TV)

A kiss from Mommy (but eyes on the TV)

All I Want for Christmas Is My Extubation

The plan in the ICU is for Alec to have his ventilator tube removed tomorrow.  His X-ray shows good improvement today and he is relying on the ventilator very little.  He is also much more awake and alert for much of the time and interacting well.

As best as I can tell, he’s kind of in a bad mood.  He very strongly insisted that I turn off the music today and sometimes he’s pushing me away.  However, Laura helped me remember that he had his monthly maintenance antibiotic yesterday and that always makes him in a foul mood for a couple of days. He seems like he’s not paying attention to what’s going on, but his blanket magically appears in front of his face every time I try to take his picture. nopics24th

His only setbacks have been some brief periods of declining oxygen levels in the afternoons, but they do therapy to help him get out any loose phlegm, and then he’s fine again.  In fact, he’s helping them to do the tube suction.   When he has to cough, they have a tube that slides within his breathing tube to suction it.  Before, he resisted it and would bite down.  When the suction tube is fully inserted he gags a bit and cannot breathe for a split second.

Today, though, he had a suction treatment and the nurse asked him, “Is that better?”  He shook his head no.  She asked, “Do you need it again?” and he nodded yes and opened his mouth to help.

To prep for tomorrow’s planned extubation, the doctor added a new IV line in his arm called a PICC line.  It goes in his elbow but threads all the way back to his heart.  He’ll keep this line after we’re discharged and it will replace the port he had removed until he can get a new port.  With the PICC line in, he had the femoral line in his groin removed, and he will get his arterial line in his wrist out as well.  He’ll be able to move about more freely then and it will be safer to use the bathroom with that femoral line out.

He also still loves his elf boots.  He always says “no” when they ask them if he wants them off, and “yes” if they ask him if he wants them on.

The procedure for the PICC was this afternoon. He had higher sedatives for that and was sleeping pretty well, so I went back to my brother’s house to catch up on some sleep and came back to sit this evening with Alec.  If he’s extubated and unsedated, I will be back to staying overnight in the room with him.  We won’t have round-the-clock nursing staff in the room anymore.

I’ve not been told of any timeline yet for moving out of the ICU.  However, with his antibiotics schedule, the earliest we will be going back home will be December 30th.icuxmas

I made him a little Christmas tree display in the room.  My brother was bringing his desktop tree home from work, so I grabbed it.  I used a donated Santa quilt and some donated gifts along with some toys we brought. So far, Alec’s only eyed it suspiciously, but the more he’s out of sedation, the more he’ll like it.

Laura explained to Owen that Daddy and Alec will still be in the hospital on Christmas but that they will still have presents at home.  In reply, Owen said “A turnip is a vegetable” and went back to what he was doing, so he’s apparently okay with that.

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.

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.

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!”

Another Day Recovering

Today Alec’s X-ray did not show any discernible improvement, but the numbers on his ventilator say he’s doing a better job of getting oxygen in his blood, which says his lungs are continuing to heal.

The biggest improvement is in his blood counts, with his ANC count up to 1,120. That greatly improves his body’s ability to heal, but we have to take a break from the drug that helps him build ANC because too many white cells can cause more inflammation and make his lungs worse.

He’s much calmer today too. Yesterday he was waking up often and getting agitated each time.  He would struggle a bit trying to take things off of his face and his heart rate would go up. Today, he’s waking up just as often, but he’s not struggling at all.  Mostly he just wants to scratch his chin.  He seemed to like getting cleaned up and having fresh sheets. His room is designated as “low stimulation” too, so they keep things quiet and not too bright.

His calmness is likely due to a change in his blood pressure medication; the new medication has an anti-anxiety side effect.  He’s really going along with everything well today.  He actually opened his mouth to help the nurse clean it out.  He also mouthed “no pokes” to me when a new doctor showed up.  When I said “no pokes, just a stethoscope,” he calmed right down.  (Remember that all this “awake” state is relative, and that he’ll have no memory of it later.)

The other change is that they added a feeding tube.  The tube goes in his nose and down his throat all the way to his small intestine. He’s been on TPN nutrition through his IV system, but he can’t stay on that too much longer because it is hard on his liver.  Nothing’s been through his bowels for several days and they want to “restart his gut” too.  Putting in the tube took all of five minutes.  It took much longer to set up for it (they use a florouscope to watch it go in). It has to go to his intestine so he has no risk of regurgitating anything.

I talked again to a nephrologist about his kidneys.  She was quite sure that he has a kidney injury due to their size and density.  However, it is not a serious injury nor a permanent one.  They are making urine just fine and test well.  She explained that when the body goes into sepsis and the blood pressure goes way down, the kidneys are affected first and respond by dumping all their hormones into the blood.  Another way to think of it is that the body will sacrifice the kidneys for more vital organs.  Kidneys are very resilient, especially in children, so she expects they will bounce back.  They might have already been strained from the chemotherapy prior to the sepsis as well.  But any dysfunction so far is minor, just elevated blood pressure, which they can’t completely attribute to his kidneys anyway due to all the drugs he has.

At the end of the day I saw the oncologist again, with nothing much new to report.  He expects a few more days on the ventilator and then a good stretch on the 9th floor after to recover from the ventilator.  One of the things Alec will have to work on is building up his breathing muscles again.  The longer he’s on the vent, the more they atrophy.

(Edit: Also, we have a really cool nurse today.  She figured out on her own that he likes his blanket, his “fuzzy,” around his head. She got it positioned next to his face and asked him “Is that better?” and he nodded yes!)

I got a visit from an old friend who lives in Grand Rapids today too.  It was great to catch up, though we found out the hard way that flowers are not allowed in the ICU.

And here’s a picture of a train.

Steam train


Overview: Where We Are and Why

It may be hard to follow my blog because I’m being so detailed and incremental in my posts.  Here’s a brief overview of Alec’s condition.

He’s recovering from an acute lung injury called ARDS.  While he recovers, he is on a ventilator which breathes for him and he has to be sedated.

He got the ARDS as a complication from a serious bacterial infection in his blood (“septic shock” or” sepsis”), which he was susceptible to because his immune system was knocked down from chemotherapy.

We first came in with the infection on December 11, and he went on the ventilator on December 16.  His lungs began improving on the 18th. The best estimates now say he’ll be on the ventilator several more days, and will be in the hospital recovering from the ventilator for several more days after that. After he’s recovered from the ARDS we’ll pick up his chemotherapy schedule and start his long-term maintenance, which will take two years and (so they say) will be much easier.

His precise diagnosis is non-Hodgkins T-cell lymphoblastic lymphoma, or cancer causing one kind of white blood cells to keep living and dividing past the normal life cycle.  He was diagnosed and began treatment in April this year, and his cancer has been in remission since the end of May.

Steady Improvement Today

Today was a less hectic day in terms of news from the medical teams.  He’s showing good progress on all fronts.  His lungs are clearer on the X-ray, his immune system counts are up, and his ventialtor settings have all improved.

He did have a more restless day, though.  Whenever medicines change, his sedation has to change, and he may be growing a tolerance to some of the sedation meds too.  He was moving more fluid out on his own through coughing, and that combined with lighter sedation means he’s waking up more.  After he gets a good amount of coughing done, though, the nurse boosts his sedation and he sleeps a good long while. He’s reaching for his face more, but we figured out that his nose is itchy and if we brush it for him, he relaxes. He’s got a small tube going in his nose, and that with the strip of tape holding it there is triggering his scratch reflex.

I wrote before about the relative use of the word “awake” here; another feature of the sedation is its anti-anxiety effect.  He’s had one of the sedation drugs before and the doctor then called it the “I don’t care” drug.  When you have this drug, you have almost no emotional response to what’s going on, and you have no memory of any events afterwards.  (I asked, but they won’t give me any.) So even though he’s waking up, struggling a bit, and even trying to talk sometimes, it is far less stressful on him than it looks.

He especially liked the physical therapy he got today.  The therapist got under his shoulderblade on each side and massaged it a bit and that really relaxed him. He seems to respond differently to different people’s voices and he likes the therapist’s voice.

For me, it was great to get up this morning and be able to check his overnight lab results on the computer before I got to the hospital.  I had an easier time listening during morning rounds because I was not trying to write down all his stats at the same time.  (It’s also easier to listen now that they’re not talking about multiple organ injury anymore.)

But he tugs my heartstrings each night when I get ready to leave.  The last thing I do is say goodnight to him and no matter how sleepy he has been or how quietly I talk to him he always pops his eyes open to look at me right before I go. Sigh.