Jason in the Hospital

Jason spent 10 days in the hospital in November.  Feel free to skim, this will be long.

Around Nov. 9 Jason started feeling sick.  We took his temp and he had a fever of 102.  On Monday Nov. 10 I came home for lunch and woke him up as usual and he couldn't even open his eyes because he had such a horrible headache.  He put a sleep mask over his eyes for the rest of the day because it hurt so much!  We figured it was a sinus infection so we made a doctor appointment for the next day.

Tues. Nov. 11 we went to the doctor.  When the nurse took his temp it was 105!  She went out for a minute then came back in and took it again to be sure it was really that bad and it was 106.  The doctor came in a minute later and told us to go straight to the emergency room.  So we headed over there and ended up spending 8 hours in the emergency room (about 2-10 pm) trying to figure out what was wrong with him.  He was absolutely miserable.  His head was killing him and he was so hot from the fever.  His skin was really red and flushed from his fever, which hovered around 104 for most of the day.  They did a chest x-ray, brain CT, blood tests, and worst of all a spinal tap- which they had to do twice because of the fusion in his spine.  He also needed oxygen.  At the end of the day they finally admitted him to the ICU.  At that point their guess diagnosis was Serotonin Syndrome, which is when medicines you're taking that affect serotonin mess up your serotonin too much and cause havoc in your body.  Jason was on 3 or 4 different meds that could be causing it, but their guess was that the culprit was a new med that he had started about 2 weeks earlier called Lamictal.  The treatment for Serotonin Syndrome is to stop taking any meds that might be causing it, give supportive care, and a sedative med called Ativan.

Wed. Nov. 12 was Jason's birthday.  Here's my facebook post from that day: 

His fever is down to 101 this morning but he still has a really intense headache and he's generally miserable because they've taken him off a lot of his pain meds. They have him sedated so he'll sleep for 5 minutes, wake up and groan in pain, and go back to sleep again. Thank you all for being so caring, i'm looking forward to showing him your comments when he's lucid again!

I loved having facebook throughout this whole experience, it was such a great way to easily share what was going on with everyone and to feel their support.  And to keep a record of what happened when!

By the end of the day Wednesday he was doing a little better.  His temp was almost normal and he woke up a little from the sedation.  He even had a little appetite and ate a little snack.  Then he was able to get up and walk a little, and his headache was somewhat better too.  I went home that night feeling very hopeful that the next day would be even better.

Thurs. Nov. 13.  I got to the hospital and the fever was already back up.  They took him for another chest x-ray and his lungs looked bad.  They were inflamed and filling with fluid.  After that things got pretty intense.  Lots of people doing lots of things to him.  They mentioned to me that intubation might be necessary, and that if that happened he would be sent down to the hospital in St. George where there were more specialized doctors and a more equipped ICU.  Soon after that they did a blood gas test and found out that his blood was way too high in carbon dioxide.  That was the final straw, and they decided to intubate.  At that moment it felt like a huge blessing because they also put him to sleep.  Up until then he had been acting absolutely miserable and confused, groaning in pain, trying to talk but not making sense, trying to move off the bed, trying to take off the oxygen mask, it was awful.

At that point they were already preparing to fly him to St. George.  I asked the doctor if they needed me to stay for anything now that he was unconscious and he said I might as well go and get things in order, then head down, no big hurry.  

So I went home and called my mom.  I cried to her for a little while and she helped me figure out what to do next and said she'd call Jen to see about who could come help with the kids.  Then I packed some stuff, went to each of the kids' schools to tell them what was going on and give them hugs, got some snacks, got my oil changed, and headed to St. George.

This is what he looked like when I got there:

Unfortunately, he didn't get to stay as completely sedated as I had hoped. (I guess it's not safe or something....whatever.) They would increase or decrease the sedation depending on how his body was reacting.  He would wake up just enough to try to pull out the breathing tube.  They put "reminders" on his wrists (aka restraints) so he couldn't.  

In Cedar another doctor had consulted with ours and thought that it was probably not seratonin syndrome after all.  So they were testing for viral type stuff like Ebola, but they still didn't know what was wrong.  The doctor we were transferred to in St. George was a pulmonologist and he did a bronchoscopy soon after I got there, which means I got to see the inside of Jason's lungs!

I found out that after I'd talked to my mom, she'd had an impromptu conference call with a bunch of my sibs and they had made a plan to take turns so that someone would be with us for as long as we needed.  My family is amazing. Jen had also gotten in contact with her friend's parents who had a condo in St. George and they offered it to me for the week.  People are amazing!

I stayed in the Condo pretty much every night after that.  My family was able to stay with the kids so I didn't have to exhaust myself going back and forth and I was able to be with Jason more.  

My dear friend Jodi came down later that first day in St. George and brought me this awesome hospital survival kit!  A fuzzy blanket, a cool new water bottle, my favorite gum, and always-necessary chapstick.  Also it was all in a handy bag that was really useful.  

Jodi stayed with us for a few hours.  They were really hard hours so it was so good that she was there.  It was so hard to watch him be so miserable.  He would gag a lot on the tube, he would try to reach up and pull it out, his face always looked like he was in so much pain.  Once in a while he would try to communicate and I would try to figure out what he needed but there was just no way to know.  All I knew was that he was miserable in a way I couldn't even comprehend.  The look on his face when he first woke up intubated was just pure panic.  He later told me that when he woke up he thought he had been there for weeks and was really worried about me dealing with everything for that long.  And of course he had no idea what was wrong, where he was, or how long this was going to go on.

That next day (Friday) we got our final diagnosis.  A rash appeared on Jason's legs and feet and a dermatologist diagnosed him with D.R.E.S.S. syndrome, which stands for Drug Reaction (or Rash) with Eosinophilia and Systemic Symptoms.  The E word refers to a type of disease fighting white blood cells, and the systemic symptoms for him were his lung problems and some heart stuff (high heart rate, palpitations, high bp)  So basically it was what they thought it was that very first day in the ER-- a drug reaction.  I decided this was definitely preferable to the scary virus diagnosis.  The treatment for DRESS is just to stop taking the offending drug (he'd been off since the first day) and to do supportive care, aka keep him alive!  Which they were doing a good job of.

That day Annette flew from Idaho to Vegas, then rented a car and drove up to St. George.  She came and spent a few hours with me before heading up to stay with the kids.  That night I made plans with Annette for her to bring the kids down to St. George the next day (Saturday) so I could see them.  We decided the kids could go the mall and the children's museum and hang out at the condo.  I figured I could probably go with them for a while since Jason was still mostly unconscious.  

The next morning I got the wonderful news that Jason would be extubated that day!  His lungs were working on their own and the breathing tube could come out! I was so excited and relieved.  They said they needed to wake him up and watch the readings for a while to make sure he was breathing good when awake, then they could pull that awful breathing tube out.  They turned down the sedative and he woke up.  I told him what was going on, and he pointed to my watch to ask how long and I told him less than an hour!  It was so exciting, it kind of felt like waiting for a baby to be born.  Jason was upset about something and kept making a squeezing motion with his hand.  I couldn't figure out what he meant and I was again SO grateful he was getting extubated and he would be able to tell me what he needed!!

So it actually only ended up being 10-15 minutes, and they did it!  Woohoo!  Painful for Jason, but he did okay, and now he could talk!  It turned out the squeezing thing was the blood pressure cuff, which was killing his arm and going off every THREE MINUTES!  So yeah, they changed that.

The kids arrived later that morning.  Jodi brought some of them too since Annette just had her little rental car.  Jodi had told me she was coming down that morning and to let her know if I need her to bring me anything, so I was like, yeah, some kids!  It was great for me to be able to see them, but since Jason was awake and pretty miserable I stayed with him while they went and had fun.  Annette dropped Nat and Missy off at the mall and took the other 3 to the museum, then they hung out at the condo until Jodi was ready to help take kids home.  

Jason had a really hard day.  They had stopped all of his normal pain meds and were giving him other ones/lower doses, which we thought was pretty ridiculous.  He couldn't really move much yet either.  He napped a lot though.  

That night the nurse was being awesome raising his meds and trying to get his pain under control, but he was still so miserable, so I stayed later than usual, probably until about midnight.  It was so hard to watch him suffering and have no way to fix it.  

That night when I got back to the condo there was a little note on the inside of the doorknob from Natalie.  Then as I ate and got ready for bed I kept finding more notes!  The kids and Annette had left notes all over the condo while they were there earlier that day!  I was so impressed with the places they thought to leave them.  On the milk, in the cereal box, on the toilet paper roll, on my pillow, so I found one every few minutes as I got ready for bed.  It was the cutest!  I found more in the morning too, in my medicine bottle, taped under my hair dryer, etc.  It was the best.

He stayed in the ICU two more days after that.  He was pretty apprehensive about moving to the regular floor.  The ICU nurses only have 2 patients to take care of so he was getting really good care there, and his last hospital experience a couple years ago (after a surgery) was pretty bad as to actually getting what he need from the nurses when he needed it.

They moved him on Tuesday, and it turned out okay.  They took good care of him. He was feeling better, his pain was under control, and he was able to not be hooked up to so much stuff so he could move more.  My parents got there that day and stayed with him for a while so I could go to work for a few hours and see the kids at home.  Then the next day they brought the kids and they got to visit him for a little while.  Then my parents headed home and the kids stayed in the condo with me that night, that was fun.  I brought the kids home in time to get to school then headed back to St. George.  Jen got there that day to have a turn staying with them.  Jana and Eric were planning to come next but didn't end up needing to.

There was a big window in his new hospital room and this was the view, pretty right?

Once he was out of the ICU his recovery progressed pretty quickly.  They were able to unhook him from more and more things each day, and he was slowly able to eat and do more.  He spent 3 days in the regular room, then we went home on Nov. 20.

Now it's February and I'm finally finishing this entry!  He had problems with aspirating for a while after we got home, which we think was because of something the breathing tube did to his insides.  That finally went away after about 3 weeks.  He also had heart palpitations for a couple weeks, but those are gone now too.

This week is the first time that he has actually seemed completely recovered.  Or at least mostly completely.  His lungs are still a little wimpy.  His oxygen level used to always be 99-100, but now it's usually 92-93.  They've added oxygen to the c-pap machine that he uses at night.  

Oh, and also, he doesn't remember half of it.  He remembers going to the doctor that first day, then nothing until he woke up intubated in St. George.  It's so crazy that he was walking and talking and he doesn't remember any of it!  It drives him crazy.

So I think that's the end!  That was really really long.