A lot can change in 5 days

I am writing this update from Zale Lipshy hospital in Dallas with Hunter.  Macey and Sadie are a short drive away in Ft. Worth and have thankfully graduated off the labor and delivery floor.  They are settled in hopefully for many weeks of monitoring until Queen Sadie is ready to be born.  Macey is still having a few contractions occasionally, but shows no sign of being in labor.  There's the good news.  If you were wanting to be uplifted, you probably should stop reading now.  A lot has changed in the last five days.  

When Macey's water broke Thursday morning, Jana jumped in the car leaving Houston to Harris in Ft. Worth.  Hunter got that determined look in his eyes that I've seen many times before and got after his rehab.  He walked down the hall with PT in his walker, did lots of anti-gravity arm exercises, could lift up on his heels and toes a little, and was working on strengthening his legs.  We switched over to all oral pain meds, his hemoglobin was up, and he was ready to come home.  His left arm was a little more weak and he couldn't lift it over his head any more.  

Friday was more of the same.  He had PT, walked to the bathroom just fine with me by his side, saw all his doctors, and went home to aggressively rehab and get stronger.  His blood counts were up and stable.  His steroids dropped again to 40 mg.  He could get part 2 of his Rituxan in Abilene.  We had a conversion van so he could lay down and Mark met us in Temple to help in case I needed it.  The drive was a hard one for Hunter.  The vibration of the car plus being uncomfortable for six hours was unpleasant.  His legs couldn't support his weight when we got home, and Mark and I carried him inside our house.  Mark stayed the night.

The next morning, we took him to his first PT session at Action.  We tried the walker going to the car, but he didn't do very well.  He was exhausted by the time we arrived.  Once we got there, he pushed himself backwards in the wheelchair a few laps.  His arm strength was worse.  Both the therapist and the on call nurse I talked to in Houston agreed we needed in home PT until he was stronger.  The increased weakness was due to the car ride effect's on his body was the thinking.  Mark left that afternoon and took Hudson to see Macey, and my brother Nathan came to stay the night and help me lift Hunter.

Sweet brother in law

I had to run up the street and kiss these cheeks.

Happy reunion here:)

By Saturday night Hunter wasn't able to help with his legs to get to the bathroom.  We did most of the work getting him up and out of his chair and setting him where he wanted to move.  He also couldn't get his left arm up to his mouth to feed himself, so I fed him dinner.  Again I called Houston, and the answer was the same....his muscles are weak and need rehab.

Sunday morning even the act of sitting up caused him to be short of breath and clammy.  He also was nauseous.  We skipped breakfast and laid him back down hoping he would feel better once he woke up.  One of our good friends from church who has a background in PT came over to sit with us during church.  He stretched Hunter out good and they did some leg exercises.  Hunter was able to take his pills and ate a few bites of a protein smoothie.  He drank about half a sprite then needed back in bed sick to his stomach.  I knew then things weren't good.  Hunter is supposed to drink 2 liters a day for his rejection medicine.  That wasn't happening.  Bo and Nathan kept him company all day.  The watched some football, moved Hunter around some, and he laid down for a 3 hour nap.  When he woke up Mark was back and I was pretty sure we needed help.  He still wasn't eating or drinking.  We waited for Jana to get back, and called a few elders to pray over Hunter.  As soon as we finished praying, we called an ambulance to take him to the ER for fluids.   

Good men right here

praying over Hunter

There's just something really awful about watching your husband loaded in an ambulance.

 One of my friends Jenny, who has been a great cheerleader through transplant, happens to be married to an ER doctor.  Her husband Wes has also been a stem cell donor and saved the life of a young man five years ago.  Wes only works a few shifts a month in the Abilene ER, but was working on Sunday night.  He greeted Hunter off the ambulance and worked on getting him back hydrated.  His bloodwork all came back ok.  It was very obvious Hunter was quickly declining on the treatment plan from Houston.  We needed to move him somewhere that specialized in neuromuscular treatment.

You know you're exhausted when you'll lay on the floor of an ER room at 2 A.M.

 Jenny texted me a list of neuromuscular centers of excellence in the world.  One name that was mentioned several times was UT Southwestern.  We thought it sure would be nice to have Macey and Hunter close to each other.  But we needed someone there to accept his care.  Our primary care doctor was trying to figure out a contact.  Whitney Mascorro was there to check on us, and she called a friend who got us in.  Then we just had to get the paperwork going.  I went home to pack, Jana left to beat the chopper, and Mark stayed with Hunter in case it all got pushed to the next day.

Brave brave boy right here.  This was hard.  I love him so much.

And so was this.

 Hunter had a good trip and Jana was there to meet him.  You could see the relief on Hunter's face as they rolled him in his room that he was finally at a place to get better.  He is sitting on the edge of her bed on his own power, twisting her shoulders, and marching his feet up a few inches at rehab this morning.  We've seen some little signs of improvements.  

Working hard at physical therapy.

 Right now Hunter can't move his arms at all.  He can wiggle his left fingers a little.  He can raise his feet a few inches off the ground.  He is literally trapped in his own body.  He can shrug his shoulders and hold up his head.  He still had control over his trunk.  But that's about it.  He is uncomfortable from being in a bed for most of the last two weeks, and can't do anything for himself right now.  I can't even imagine how frustrated he must feel.  He still doesn't have much of an appetite.  He choked down a little soup last night and took a few sips of Ensure here.  I will stop my description here, because I think you get the gist.  This is beyond awful for Hunter.

The team here has an incredible reputation.  They are consulting with his Houston doctors to treat his ongoing hemolytic anemia and ITP all the while assessing the treatments he's already had last week.  At this point I would say they're still gathering information as to the plan for Hunter's recovery.  Hunter's on the equivalent of 100 mg of IV steroids today.  He's going to have a nerve conduction study tomorrow morning.  That's all we know so far.

Just about every moment of Hunter's day is miserable and anxious.  If you're having a hard time reading this, imagine how hard it is to watch.  Hunter needs prayers for mental toughness.  Badly.

Nathan, Katie, and baby Harper took the boys on a date last night.  Team Hanner in Abilene has got them taken care of.  We are really missing our guys.  As I hugged Benton goodbye last night he reminded me that we'd already been gone two weeks and he wanted to come home.  Lord, rescue us.

As you can see, we are in desperate need of a miracle of healing for Hunter.  He is such a complicated case that we are praying wisdom over these doctors.  We ask for prayers for Mark, Jana, and I for words of reassurance and comfort to Hunter.  He is afraid and anxious.  We pray for healing for Hunter's nerves, for renewed strength in his muscles, and the courage he needs to fight hard.  I've never known anyone more mentally tough than Hunter, but this is testing his limits.  I have to count on team Hanner to pray for these specifics, because all that I can cry out is Please Lord.