Rough Week

Sorry for the lack of posting.  It has been a very busy last week.  Hunter has bounced back and forth from ICU to the intermediate care floor twice.  Although it's temporary, Hunter is currently a quadriplegic.  He has very little use of his arms and legs.  This is very upsetting to him to say the least.  He has feeling and sensation in his arms and legs, but just can't make them move.  He is trapped in his body.  While his doctors can't predict the future, they fully expect him to make a full recovery.  It will just be slow.

Soon after my last post Friday night, Hunter graduated from ICU and headed to intermediate care.  He was to continue his IVIG treatment, keep on his blood thinner for his pulmonary embolisms, rest, and get stronger.  He did just that over the weekend.  Mark and I felt like his movement was getting better in small ways.  Sunday morning he could squeeze my hand, and that felt pretty good.  I got the best night's sleep that I've had in several weeks.  We were looking forward to starting rehab.

Monday morning he woke up with extreme nausea at 6 a.m.  They tried several different medications trying to get it under control, but he was still in a full out sweat and getting more and more agitated.  He said he didn't even have the strength or control to throw up even if he wanted to.  His blood pressure and heart rate were both too high.  The nurses started rushing all around and within a few minutes he had an EKG, chest x-ray, and an ultrasound of his abdomen.  After reading the EKG, the resident felt it was best we moved back to ICU.  They gave him a dose of something through his IV to lower his heart rate and blood pressure.  During all this he was basically incoherent.  He thought he was in Houston, didn't know the month, etc.  Once we arrived back in ICU, the critical care doctor reassured us that his heart was fine, and this was a perfectly understandable reaction to stress by someone unable to move.

We stayed in ICU until they found a room for him back on the floor Wednesday night.  The nice thing about the critical care unit is that you get just about anything you need right away.  Doctors and nurses are just outside your door all the time.  All his medical issues that he came in with have pretty much been resolved.  His liver enzymes were elevated, but that's on it's way down.  He only has one treatment remaining next Tuesday for his hemolytic anemia, and his hemoglobin has remain steady in the 7's without any transfusions.  Just from our experience last summer, we would like his hemoglobin to go up, but the hematologists here are watching that and are fine with his current level.  He has moved to a coumadin pill for his blood clots in his lungs instead of a constant IV drip of heparin.  Lung sounds are good with no sign of the suspected pneumonia.

And now to the not so fun part of our week....Hunter hasn't made a lot of progress with his movement.  This is making his anxiety a lot worse.  Physical Therapy has started and come the last two days.  We are so proud of his effort.  They are working on things like holding his head up while on the side of the bed and pulling his shoulders back to take a deep breath.  We can see that his legs are firing a little better when he tries to slide them closer to him in bed.

Because of the nausea, he also hasn't been eating.  For the last two weeks most of what he has swallowed has been soft and cold.  You can't live on greek yogurt and protein smoothies.  Wednesday he got a feeding tube in his nose to provide nutrition for his body to fight.  It has been extremely uncomfortable to him and he feels like he's got something stuck in his throat constantly.  Hopefully his appetite wakes up and we can pull the tube right out.

This is just really the tip of the iceberg.  Hunter's days are long, and his nights not much better.  He is truly struggling right now.  Mark has been with him each and every night he's been in the hospital here.  He is a great dad.  He said they were up every hour for pain, nausea, or trying to get comfortable last night.  He left the hospital for the first time today to take a good nap.  Our hearts just cry out for healing.  It is just so hard to watch someone you love suffer so much.

Mark has not left his side for two weeks.  Great support system!

Happy to be out of bed and sitting upright!

Thankful for technology and FaceTime

The boys sent Hunter pictures they had colored and a new book

Yesterday mom called and asked me to step outside Hunter's room for a moment.  Mom and Michelle were waiting with open arms.  I didn't know just how much I needed a few hours with them until they were here.

We are loving being 3 hours from home instead of 6 hours.  Mom, Michelle, and I even got to run across to Ft. Worth and see Macey and our precious Sadie.  Wednesday was 26 weeks for them:)  I have been blessed with visitors from Abilene every day this week.  Hunter has full days here at the hospital with respiratory therapy, doctors in and out, PT, OT, and trying to rest.  He's not really up for much company, but I've been built up by friends who stop by to hug my neck to help us get through this time in life.

We are so thankful for friends who love us.  This picture blanket arrived and is the perfect motivation for Hunter to keep working on his rehab.  We have a lot waiting for us at home.

Speaking of the boys....they've had a great week.  Sunday they went to Commanche and experienced a little bit of farm life at the Pow Wow fest.  I think the camel looked especially interesting:)  Thanks Ernie, Bo, and Bridget for loving on our guys.

I think Clayton was a little sweet on Lola Jane.  Sorry Bo.

 Their week has been full of cousins, playdates with friends, and lots of people ready to help take care of them.  We appreciate Team Hanner in Abilene.  We have had many meals delivered to the hospital, and mom had dinner brought to her almost every night this week.  Our friends have truly blessed us.

  

dinner with Nana

The director of the twins' school texted me a picture of a prayer tree they set up for our family.  

balls, trucks, and cousins

If you look closely, these ladies are holding up a hundred for hunter sign.  While we are going to postpone his ride, we are still grateful for all of Team Hanner that has donated to Be the Match.  We are going to have a heck of a celebration when we get home.

We have many prayer requests, but not much energy.  I know the Lord hears the cries of our hearts.  Hunter asks for specific prayers for mental toughness, strength for his muscles, and an appetite to get off the feeding tube.  I would add prayers for endurance for our family, and protection from infection, and that the nutrition going in his body will increase his hemoglobin.  Much love from the Hanners.