Ironman

Sometimes, no news is good news.  And in our case, no updates on the blog are the result of me being completely and totally overwhelmed.  Sunday of this week Hunter became less responsive, much more sleepy, and it became harder to read his lips.  We thought it was a medication problem, but his neuro team wanted rule out the possibility of changes in his brain with an MRI.  It showed two small lesions in the brain stem consistent with demyelination in the area that controls breathing and communication.  Hunter has spent the last few days "locked in" his body.  He can hear and comprehend what's going on, but for some reason can't communicate with his mouth.  He blinks once for yes, and twice for no.  I just burst into tears when I think of what he's going through right now.  Not only can he not control his muscles, but now he can't mouth the words to say what he needs.  

When I last blogged two weeks ago, Hunter was doing trach collar trials.  He wasn't very excited about them, but we pushed him to get a few hours each day.  He was also sitting up in the cardio chair out of bed and participating in therapy sitting on the side of the bed working to get his core muscles stronger.  Mark and I got fairly tough on him to try and increase his drive to get off the vent.  We wanted him off the vent, so he could get out of ICU, so the boys could come see him.  He felt anxious that he would not be able to get enough air without the ventilator.  I went home on Thursday afternoon after he worked to spend four hours on trach collar in the morning.  I expected to have an exciting Halloween weekend with the boys and Hunter could hopefully get back to the 9 hours he went on the trach collar the Saturday before.

  Early Friday morning I got a text that Hunter had spiked a fever in the night of 101.7.  Fever means infection, so Jana and I came right back to Dallas.  The boys were very sad to see me go after just being home overnight.  Mom ended up bringing them to Ft. Worth to the Wessel house and we had an enjoyable weekend.  He hasn't run fever since then, but also hasn't progressed on his trach collar trials.  Hunter spend several days on the full assist mode where the machine did all the work.  Then we felt guilty for pushing him when his lungs weren't healthy.  Name any extreme emotion, and we've probably felt it.

Ft. Worth Zoo selfie

baby elephants

no fear here

the nastiest animal on earth

visit from Chase:)

Hunter's MRSA pneumonia had come back.  He will need a much longer treatment course than the 14 days he had already gotten.  The infected part of his lower lungs (where he also has a clot) accumulated some fluid.  When you don't get vertical, take big breaths, and spend a lot of time laying in bed, you accumulate fluid at the bottom of your lungs.  This prevented him from having the ability to spend time off the ventilator.  A chest tube was placed to drain off the fluid, and that helped his breathing a lot.  He did a lot of resting.  When we are in a hurry for him to get better, it's hard to again hear "rest day."  Saturday his doctor felt his lungs were in good enough shape for him to try trach collar again.  He only made it 45 minutes before his oxygen level dropped into the 80's and he got anxious.  Sunday he said he didn't even want to try.  I hate to admit this knowing what I know now, but at church I asked for prayers for Hunter to fight and want to get off the ventilator.  Sunday afternoon he asked to get to try again with the collar and was told no.  He was upset and confused as to why he wasn't allowed to try.  I was on my way to Dallas to switch with Mark, and pretty excited to hear he was ready to give the trach collar trials a go.  This was going to be our week to make progress.

The Hunter I left Friday night

When I got there Sunday at 7, he was already asleep.  He didn't really acknowledge my presence or ask about the boys like he normally would.  His day nurse said he had been awake and watched football most of the day and was probably just tired.  Because he hardly woke up and he had an excellent night nurse, I left him at night for the very first time since this all started September 10th in Houston.  The staff at Zale had been encouraging us for a while to take care of ourselves and get some sleep, but it's just so hard to walk away and leave him there.  We told him when he lost his movement that every time he opened his eyes one of us would be there.  So it felt like breaking a promise to leave him alone.  At the same time, I know that I'm exhausted from sleeping in a recliner for only a few hours for many weeks, then running home to pack in as much time with the boys as possible.

In the middle of the night Sunday he was moved to a bigger room with a little more privacy.  I was there first thing Monday morning, and he was very confused as his new surroundings.  It was also very difficult to read his lips, which was unusual.  I normally can figure out just about whatever he needs.  He was telling me something about a pool and it really threw him off that he had a new view out the window.  Then he went back to sleep for the rest of the morning.  We immediately looked at his medications.  The pain team had added in a new nerve pain medication called Nemenda.  Our nurse did some checking with the pharmacy, and it had a 3% chance of being sedating.  It was stopped immediately along with anything else sedating, but he had gotten a dose Saturday, Sunday, and Monday morning.  He woke up around lunch and sat up on the side of the bed for therapy.  I noticed that it was much harder for him to hold his head up.  He's been strong with head control for a couple weeks now, so that struck me as strange.  He also was having trouble with the pressure cuff in his trach.  It keeps inflated so his vocal cords don't get strained and vibrate.  Our respiratory therapist was worried that the pressure was getting too high, and that his trach needed to be changed.  He hardly woke up as they changed out his trach bedside.  That normally would have been hard to tolerate for anyone.  He still wasn't mouthing words clearly, but we could wake him up if we tried really hard.  The Chief of the Neuro ICU is his attending for the week.  Hunter could answer and respond by nodding appropriately and follow commands like show your teeth and open your eyes.  He gave a slight should shrug.  The consensus was to let him sleep off the medication.

Tuesday he was a little easier to wake up, but he still wasn't mouthing words.  Dr. A thought it was probably the medication, but scheduled him for a brain MRI just to be sure.  Hunter has had several head MRI's within the last 6 months, so I really wasn't all that worried.  He was going to have a chest CT while he was all hooked up to the travel ventilator and off the ICU floor for testing, and I was more concerned about the shape of his lungs.  Not too much later Dr. A pops his head into Hunter's room and asked if we had the scans from Houston in September.  I told him they were normal.  He said they had seen some abnormalities on his brain stem, and asked me if we could get a hard copy of his previous MRI.  Houston immediately got his scans in the mail.  They weren't sure if the changes were new or old, but they didn't light up with contrast like they were a recent change.  Nevertheless, you have to investigate.  They told me this could be nothing, but they were going to call in a neurologist who specializes in degenerative diseases of the brain.  I tried to remain calm, and just tried to wait until he woke before I panicked.

Then Wednesday he woke up.  And his eyes just stared into space.  Expressionless.  Motionless.  Dr. A pulled me into the hall and said that he believed he was "locked in."  Meaning Hunter was fully aware of what was happening, he just couldn't make his eyes track or focus.  He also made zero attempts to move his lips to respond to anything.  When pinched, he furrowed his brows.  He would look up when asked, look down, and blink once when asked.  We told him blink once for yes, twice for no.  He told us he understood that the demyelination that was taking place in the rest of the body had robbed him of his ability to communicate.  I don't think I have to spell it out any more.  Mark and Jana immediately got in the car and headed our way.  We had a meeting set up at 1:30 with the neurologist who reviewed his scans and case history.  I don't know how, but I made it until Mark and Jana and my mom arrived.  Debbie Wessel cancelled her trip to New York to come sit with us.  It felt like I was getting ready to find out that my life would never be the same.

Thankfully, we heard a lot of positives from this appointment.  The area of concern in his brain was small, and appeared to be consistent with demyelination.  Myelin can and will regenerate.  It will just take time.  He wanted a MRI of the spine to see if damage had also taken place in the spine.  Today we found out this this test was normal.  So, plans are to begin plasmaphoresis tomorrow.  Antibodies in Hunter's blood are attacking his own body, and breaking down the myelin.  He will have five treatments over the next 10 days that will filter out the antibodies and return his blood to him.  This process will take about 90 minutes each time.  They feel like this will speed up his recovery.  There are risks involved in this treatment, and we turn them over for prayers and place Hunter in the Lord's hands.

Mark and Jana report that Hunter is much more alert today.  He is turning his head.  Mark mentioned that it was cold out and Hunter looked toward the window.  Jana asked if he loved his mom and he blinked once.  We don't know how long this healing will take, but no one has lead us to believe that it won't happen.  This is so so very cruel.

 I ask for prayers that his healing comes quickly, and that he regains communication and strength at a rate that could only come from answered prayers.  Thank you to all of you who pray for our family, often times when you don't exactly know what to say.  My prayers get shorter and shorter.  Lately, they've been "Lord, I give Hunter's lungs to you.  Please take care of them."  He is currently breathing very well with very little assistance from the ventilator.  They tell us it's not much different that what trach collar is like.  What a blessing.  His hemoglobin is not high, but it's not terrible either.    

As we continue to walk this path, we are glad for all the people who are carrying us when we fall.  I can think of countless friends that have met our needs in this hard time.  Please pray that this new treatment will bring Hunter to his full health.  Pray that he can get rid of the infection in this lungs, that his blood becomes healthier after the antibodies are filtered out, and that he will feel comfort and peace during this time of great suffering.  Lord, please protect him against all the "what ifs" and help us to be the kind of support that Hunter and our boys need right now.  Our doctors have said that they already know we've run a marathon, but there's still more that we have to travel.  They said to consider this more like an Ironman.  Please continue to pray for Sadie.  She's had a great week of growth after her infection. Much love to team Hanner.