AIDP and ICU

Thank you so much for the outpouring of love and prayers for our family.  We have been surrounded by words of comfort and acts of service, and that makes this really tough time in life just a little more manageable.  Thank you friends, truly.  We know we are not alone by the tens of thousands reading the blog and praying us through these hard days.  If you're new to the blog and want to follow along with Hunter's story you can subscribe by email in the top right.  Please keep the text messages, facebook love, and prayers coming.  We are doing a happy dance that Queen Sadie has now made it to 25 weeks.  She looks perfect on their weekly sonogram yesterday.

Wednesday morning's nerve conduction study confirmed that Hunter has demyelination on his nerves.  Demyelination is keeping messages leaving his brain to get to his muscles correctly to make them fire.  This is what we had already expected from our diagnosis in Houston.  Our neurologist called it Acute, meaning only one occurrence, instead of chronic.  Hence the name AIDP (Acute Inflammatory Demyelinating Polyneuropathy).  We were thankful to hear that they don't expect this to return.  Hunter's muscle function continues to take little baby steps forward.  He worked hard in therapy and with the help of the Occupational Therapist ate some yogurt for breakfast.  He hadn't eaten much since Saturday night, so it was good to see him eat.  Chase drove over from Macey's hospital room across town and spent the afternoon with his brother.  Mark went to visit Macey.  Hunter slept most of the afternoon.  It was good for both of them to be together, but Hunter didn't feel too well.  Neurology had finally done all their homework in gathering Hunter's records, the tests they'd run, and his very extensive history since transplant.  They decided on a treatment plan of plasmophoresis to treat his AIDP.  Basically, they would take all his blood out with an IV, filter out all the anti-bodies attacking Hunter's body, then put them back in.  He would have five treatments.  He was already 2 days into his 5 days of planned 100 mg IV steroids.  It felt good to have an outline of how we were going to get Hunter well.

Team Hanner in Dallas

 As the day went on Wednesday, he was having to work harder and harder to breathe.  It was too much effort for him to try and eat or drink and keep his breath.  As his night shift nurse and night resident made their rounds, they both were concerned.  He was having to use a lot of his stomach muscles to get enough air.  The decision was made to have a consult from the critical care doctor in the neuro ICU.  His blood gas indicated that his carbon dioxide level was too high and his oxygen level too low.  Combined with a high heart rate, he needed to be monitored more closely.  However, we were worried about one of us getting to stay with him.  Hunter can't move himself around in bed to get comfortable or even punch the call button to get a nurse, so the thought of him alone in ICU was just about more than Jana and I could bear.  They were very accommodating of our situation, and said one of us could stay overnight with him.  No one said a word as the three of us came with him to his new floor.  About 11 P.M. he was moved to ICU and they began a busy couple hours of assessing.  He was hooked up to oxygen and it provided some immediate relief.

New ICU digs, complete with lots of new monitors

Looking at his some of his vitals, they were concerned with his lungs.  A chest CT was ordered right away.  Their CT machine was down at Zale Lipshy, so his ICU nurses and I walked him over to Parkland about 1 A.M.   You never get off the monitors once you're in ICU.  He was back and settled within the hour.  Results usually take about an hour.  Mark and I waited a little bit, then finally headed out.  Jana stayed with Hunter.  We got back to the Wessels about 2:30.  Neither of us could go to sleep until we heard from Jana, so waited up together until we heard about 3:30 A.M. that he had clots in his lungs and possible pneumonia starting.

In the CT tube

Now I know that the Lord tells us over and over in the Bible not to fear, but I really struggle with this in times of crisis.  I am so thankful for the calm and steady nature of Mark and Jana.  They've walked Hunter through 31 years of medical ups and downs.  They are great examples of faith to me.  As I start to hear words like ICU, pulmonary embolism, pneumonia, and that his marrow isn't producing red cells because his body is stressed I did not keep it together very well.  I cried the entire car ride home, promptly threw up, and was shaking so hard my teeth hurt the next day.  Poor Mark, Rick, and Debbie were all left trying to console my anxiety.  Driving back the next morning wasn't much better.  Even with all the miracles we've witnessed, and the way God has taken care of Hunter his entire life, sometimes fear just grips my heart in a way I can't escape.  Hopefully someday God will mold me into what he wants me to be. 

After a couple hours of sleep, doctors starting making rounds Thursday.  Hunter's neurologist was very reassuring that everything going on was treatable, he was going to get the best care in the ICU, and that he would get a different but equal treatment of his AIDP because of the clots in his lungs.  Plasmaphoresis can cause clots, so IVIG for the next 5 rounds was started.  The critical care unit here is impressive.  We got to sit in on their rounds and I can't say enough about the way the teams of doctors work together here.  Hunter is being followed by critical care, neurology watching his AIDP, hematology watching his blood counts, infectious disease deciding on the antibiotics for his possible pneumonia, the stem cell transplant team from St. Luke's across the street, and is getting breathing treatments every 4 hours.  He is still moving air really well in the part of the lung that showed some cloudiness on the x-ray.  They are checking his blood thinner level by blood draws every 6 hours.  We feel certain that there is lots of brainpower watching out for him.  Every single team says he looks much better.  Even with all this going on, they coordinated a three hour block of time for him to nap in the afternoon and a four hour block where they left him alone in the night.  We've been in hospitals quite a bit, and I don't know that I've ever been more impressed than what we've experienced in this neuro ICU.  

These breathing treatments force air deep into his lungs.  He says it feels so good!

  Thursday and Friday have both been as calm as it gets in the ICU.  Yesterday Hunter started eating and drinking again.  He passed his speech and swallow study.  Just like the rest of his muscles, his mouth is weak too.  Our therapist was an ACU grad, and had speech path classes with Macey.  In fact, our last blog post was on her Facebook feed, so she already "knew us" before she met us.  He's been doing really well with soft foods and is eating Greek yogurt, muscle milk smoothies, and has had some fruit and a little soft fish.  With the increased focus on his lungs, they've been pretty stingy with pain meds because they can slow your breathing.  Hunter has been in a bed for the majority of the last two weeks.  He has endured a lot of uncomfortable procedures.  He can't move or lift his arms except his fingers.  He isn't able to lift his legs off the bed.  He has gotten some difficult diagnosis.  He is totally dependent on others to help him do anything.  And I have not heard a single complaint.  The most he will say is that "This is a long road" or "I'm think I need to get off my back and try my side."  It is a joy, blessing, and privilege to take care of him.  He has never seemed a stronger man to me than what he is right now.  

This was late Wednesday.  He feels and looks much better now:)

These two were doing a little business ordering vehicles this morning.  It's always a good sign when Hunter starts to think a little about selling trucks.  

Breakfast today!

Back in Abilene, our boys are happy as can be.  They called to FaceTime just as they started to move Hunter to ICU.  It was good to see their little faces, but hard to hide my emotions.  My mom could see right through the act.  They are asking when we are coming home.  We know we're a long way from that.  Last year, we had a lot of time to prepare and talk about that we were going to be gone for 100 days for transplant.  This time we have just run out of town without much notice.  I am so thankful for my parents, grandparents, for our brothers and sisters, for Ernie living at our house, and for our friends that are making sure that the boys are taken care of.  The boys' teachers even go to great lengths to send me pictures and keep me informed of what they're doing at school.  Every night by dad texts out "the plan" of who is getting the boys to and from school, where they will go in the afternoon, and what fun things are planned for them.  It really is a team effort right now.  Aunt E, Uncle Michael, and Aunt Diann are working just as hard to make sure Hudson is happy and well adjusted without Chase and Macey and now Mark and Jana.  I know that Chase and Macey would agree that we could not focus on keeping Hunter and Macey well without all that's going on at home to take care of our kids.  Team Hanner is awesome.

water day at school

Aunt Ernie love

 I usually wrap up my post with a few specific prayer requests.  I almost don't know where to start.  Thankfully God already knows exactly what's going on in Hunter's body.  Pray for the doctors and nurses managing his care.  Pray for the clots and possible pneumonia in his lungs.  Pray for Hunter's nerves to continue to heal.  Pray for further protection from infection on these high dose steroids.  As I am typing, Hunter is getting an EKG of his heart.  We also haven't heard results yet from radiology reports on the swelling in his arms that was sonogrammed today.  I can just look at the machine examining Hunter's heart and feel the panic and fear of the unknown rise up in me.  We need prayers for mental toughness for all of us.  There is a long road ahead to healing.  We are thankful for all of those on Team Hanner who have faithfully prayed for Hunter for a long time now.