No More Trach and Back to Rehab:)

Today we rejoice in all the the Lord has done to heal Hunter!  His trach came out last Tuesday afternoon, and he's not missed it one bit!  We are grateful and so very thankful that Hunter no longer needs any assistance to breathe.  Today he ditched the nasal oxygen.  The piece of plastic that has been in his throat since October 6th is gone:)  Until the hole completely closes, we put pressure on the opening for him to talk or cough.  It's so nice for him to have a voice all the time!  I'm writing from the rehab floor.  You might have seen my Facebook post about getting to rehab three weeks ago, but it only lasted one day.    

It's been a very busy month since I last updated.  We have been on the move quite a bit.  We've felt a little like the Isrealites always with our bags packed.  We have been wondering the desert trying to get Hunter well enough to come home.  Inpatient rehab is the last step before home, so it's our "Promised Land" at the moment.  When we chose to fly Hunter to Zale Lipshy September 22nd, it was because of the reputation of the neuro rehab floor.  It took us 4 months to get there.  Hunter was on the rehab floor less than 24 hours.  After just his initial assessments, he started bleeding and had to go back to the ICU.  It's been a tough month, but thankfully Hunter is making lots of progress regaining his strength.  Here is a very abbreviated summary:     

December 27th:  The ventilator was rolled out of his ICU room.  We celebrated!  Praise you Lord!

December 30th:  Transferred to the floor at Zale until he was strong enough for rehab.  Bed and shower for me, Mark, and Jana!  More freedom!

January 8th:  Checked him into the Neuromuscular Inpatient Rehab at Zale Lipshy.  Woohoo!  3 hours of therapy a day!

January 9th:  Developed a severe GI bleed and was moved back to Zale ICU.  Scary night.

January 10th:  Moved to Clements hospital ICU down the street where the GI team could treat him.

January 11th:  Colonoscopy revealed a large bleeding colon ulcer that ultimately required 5 units of blood to replace what he lost.

January 14th:  Bleed slowed and we moved to the Bone Marrow Floor at Clements.

January 27th:  Back to rehab!  Next stop home:)

We've been told many times that Hunter is a complicated case.  He doesn't do anything by the book.  This is even true for the bone marrow floor.  He needs blood thinners to treat the clot in his lungs, but when they are to the treatment level his ulcer bleed started.  The GI team feels like the ulcer was caused by an episode of low blood pressure and will heal without intervention.  That's a huge praise.  His colonoscopy revealed a colon that had done a lot of healing since transplant just as his GI doc predicted two years ago.  The bone marrow team wanted to restart and observe him on blood thinners before he goes to the rehab floor for his lungs.  So that's where we've been the last two weeks.  His abdomen pain from the ulcer has gotten a lot better.  His trach is out.  The BMT floor is a very clean and comforting environment for us.  The hospital just opened a month ago and it feels more like a luxury hotel.  He is getting physical therapy and occupational therapy most days.  But the BMT floor is not what he needs to get home.  So we wait.  And pray that once his blood thinners are to the treatment level for his clots his ulcer will not bleed.  Also, the decision has been made to start weaning Hunter off his Prograf.  This is a big deal and the beginning of the end of being immune suppressed!  We are praying for uneventful weeks and months ahead.

After four months of little to no progress in Hunter's strength and movement, many of our prayers are being answered.  His arms now can both lift shoulder height, and much of his range of motion has come back in his arms.  He reached up and scratched his cheek today.  His grip and wrist are still in progress, but they're getting better daily.  It will just take a lot of work to get back the strength and muscle memory to do everyday tasks.  About 10 days ago his leg muscle twitched for the very first time since September.  Therapy has some fancy toys that help Hunter tilt upright and bear part of the weight of his body on his feet.  Today he was able to fire his quads and do some partial squats.  This is extremely exciting!  To say he's lost a lot of weight and muscle would be an understatement.  Our bodies are not made to lie in a bed 24 hours a day.  They have told us to expect two days of recovery for every day spend in bed.  Hunter want to walk and make a full recovery, and knows he has a lot of work ahead of him.  Currently, the nerves in his legs and feet are "waking up" and he says it feels like someone is stabbing them with knives.  Hopefully this will pass soon, and will be followed by increasing sensation and control over his feet.  Right now he can't move them yet.  The nerves closest to his spine recover first, and the further from his spine will take the longest to reconnect.     

      

Celebrating his first 24 hours off the ventilator:)  Wasn't sure this day was possible!

Zach spent 3 days keeping Hunter company.  He got to wheel him out of the ICU after almost 3 months.  Zach said the nurses and doctors lined the hall and cheered.  I can't say enough about the excellent group of people in the Neuro ICU.

Hunter wanted to get out of his room....and they said take off!  He was happy to have a new view.

FaceTime with little guys:)

Checking in to rehab the first time!  We were so so thrilled.

Meanwhile....back at home Benton had an eye doctor appointment and got his eyes dilated.  He's one cool dude:)

Sweet sweet Clara had an "Who I Admire" project and chose her Uncle Hunter.  Love her heart!

Hunter had a surprise visitor!  He and Jordan had a ball catching up on life.  He's really enjoying having the ability to talk after so long of reading lips.  Mark might be the most excited:)

We had a great night with Chase and Macey!

These guys are growing!  We are ready to be back together with their daddy.

Having to relearn how to sit

Working hard on squats!

G-Daddy and his little helpers

Looking handsome in his new glasses and draws like his Daddy!

 I'll have to admit I've had quite a bit of writer's block over the past weeks.  As soon as a blessing comes, trial follows close behind.  It's sometimes hard to get excited about progress when you're not sure what's coming next.  I posted an update on Facebook about Hunter going to the rehab floor then couldn't quite talk myself into voicing my disappointment blogging about his bleed the next day.  Chase and Macey were told Sadie might get to come home before Christmas, and soon after her infection was found in her neck that needed surgery to clean out.  She's doing great, but has another 3 1/2 weeks of IV antibiotics.  Pray she continues to grow and the infection is gone for good.  We have spent many months following, seeking, and finding God in the desert.  Now we are ready to go home.  The support of our friends and family has been amazing.  It would not be possible to be here with Hunter if not for all the help we have at home.  We truly have been blessed over the last few months.  It is humbling.  Hunter asks for specific prayers that he has no more bleeding on blood thinners, and that his pain can decrease.  I would add no infections or weird autoimmune issues as he tapers off his rejection medicine, and that his body will regain strength, appetite, and weight quickly so he's safe to come home.  Thank you for all your prayers offered on behalf of our family!