Pneumonia

Thank you to all of you who have prayed us through this week.  We have felt a peace not possible if not for the intercession of others on our behalf.  The ICU is so busy with all the different doctors following Hunter you hardly have time to think, much less blog or be on social media.  We have been blessed by encouragement for people all over the world.  I just logged on to Facebook and it's full of messages of prayers for our family.  Please don't stop.  My post on Monday was a small piece of Hunter's puzzle.  While his respiratory failure didn't happen overnight, it caught us by surprise.  He is breathing so so so much better on the ventilator. Let me back up, more than anything so our boys have a record to read someday about their daddy the warrior.  

Last Thursday night Hunter had a lot of pain.  He ended up with quite a bit of morphine.  Too much, in fact.  He was seeing people in the room, pledging Galaxy, was convinced his brother had dared him to strip off naked, and was working car deals with Mark.  We could laugh, but the entire rest of the day, he was easily confused and breathing was a little labored.  Everyone thought he was just still looped out from morphine.  But that didn't really take care of his pain.  He didn't sleep.  Friday night they tried a new plan to help him get comfortable.  He got two bags of muscle relaxers.  Probably was a little much for his body weight.  Then he slept the next 20 hours.  He was so peaceful and relaxed.  Chase drove over from Harris and sat with him.  Mark took Jana to eat dinner, and Erinn drove into town for the night.  We got a few necessities at Target, had takeout Cheesecake Factory, and went to bed early.  Hunter woke up Saturday night for a few hours then went back to bed for the night.  He was still easily confused and had a hard time waking up.  His oxygen saturation was 100 percent.  We thought that was great.  But we aren't doctors.  Sunday we could tell he was having to work harder to breathe.  You could see his stomach muscles and ribs with every breath.  We also could barely wake him up.  Again, we thought drug induced.  He was mentally foggy.  They tested his level of carbon dioxide in his blood.  It was way too high and showed he was in respiratory failure.  His lungs weren't strong enough to get rid of all the used up carbon dioxide.  He was moved back to the ICU and put on a bipap machine overnight.  The hope was that his C02 would come down with that assistance.

Aside from absolutely hating the mask shoving air down his lungs, he had a decent night.  He woke up and had a more coherent conversation with me in the middle of the night, then eventually went back to sleep.  It seemed to me that it was helping his mental status and I had high hopes he would have cleared out a lot of the carbon dioxide.  But that was not the case.  Monday morning his arterial blood gas was still awful.  We had a room full of doctors explain to us that if we took off the mask and did nothing, Hunter would peacefully pass away in his sleep.  I fell to my knees.  It all happened so fast.  We could intubate him with a tube down his throat and let the ventilator give his lungs the boost they needed, but that only lasts 7 to 10 days.  The team did not believe he would be strong enough to take over his own breathing in that amount of time.  They recommended we got straight to a tracheotomy.  They gave us no real promises that he would ever be strong enough to get off the ventilator.  I'm sure there was a whole lot more that was discussed, but I can't recall any other part of the conversation.  We made the decision to move forward with the trach.  Hunter was in agreement and nodded along with what was about to happen.  Surgery was scheduled for that afternoon at 3.  A tracheotomy isn't very complex and they do it hundreds and hundreds of times.  It felt so life changing for us.

A little over 3 hours later, our entire family was there.  Everyone got to see Hunter before surgery, and they took the bipap off for a few minutes so we could talk to him.  His mental status was very affected by the buildup of C02, but he was able to recognize and talk a little with all our immediate family before he went back.  It was difficult beyond words when they wheeled him away from his ICU room straight into surgery.  I've never felt that kind of fear before.

His surgery went perfect, and he looked a lot less scary than what I had pictured in my mind.  His breathing was peaceful for the first time in weeks.  He had been struggling for a while to take good breaths, despite respiratory therapy around the clock since his pulmonary embolism.  His heart rate and blood pressure were lower than we had seen in a long time.  And then he woke from anesthesia.   He had a tube down his throat, couldn't talk, and was in a lot of pain from the new plastic piece inserted in his neck.  His eyes just darted around questioning what was going on.  It absolutely ripped my heart out.  His AIDP symptoms prevented him from pointing or gesturing to let us know what he needed.  The doctors told us this was truly a cruel disease.  We have gotten pretty good at lip reading this week, but it was tough Monday to watch him deal with the hand he was dealt.  We just kept telling him it was going to get better.  I can't even imagine the thoughts that were running through his head.

While I would have loved to have been strong enough to stay with him the first night, all I could do was cry on the shoulders of my parents.  They made me eat dinner, let me voice all the things that don't need to be said in a hospital room, and I slept curled up beside my sister in a hotel close by.  Every time I woke up in the night fearful, Michelle was there to rub my back and wipe away my tears.  Nathan and Zach were also the calming, reassuring presence that I so desperately needed.  The fact that they were in the same building just gave me courage to walk in Hunter's room the next morning.  I am so thankful for Mark and Jana's strength and examples of faith in hard times.  Hunter comes from good stock.  

Tuesday his throat was raw and very painful.  He initiates all his own breaths meaning the ventilator is just supporting what he is already doing.  Every few hours he gets some extra breathing treatments pumping his lungs up to bigger volumes.  They explained that it was like exercise and helped any little pockets of cells that had fluid or weren't inflating to work better.  Tuesday's arterial blood gas level showed his carbon dioxide was much lower and almost back in the normal range.  Monday morning we were told that it could take weeks or it might never come back down into normal.  We were thrilled at how fast it came down.

Wednesday brought some ups and downs.  His throat was much more comfortable, and he barely had any secretions that came out when they suctioned his trach.  He was able to have physical therapy, and sat up on the side of the bed for about 30 seconds.  That was totally exhausting, but he fought through it.  As the day went on, he was complaining of some belly pain.  His blood sugar also had a big spike.  Our ICU doc walked in with a smile on his face and told Hunter he was keeping him on his toes.  They figured the spike was due to the makeup of the feeding tube and switched him to another.  He got a big dose of insulin and after a few hours that was back under control.  Because of the abdominal tenderness, they had to run some tests.  About 11 p.m. they wheeled him down for a CT.  It showed a spot on pneumonia in the same area where his pulmonary embolism has been.  They started broad spectrum antibiotics immediately.  In his drowsiness on the bipap and when he couldn't protect his airway he probably aspirated a little saliva.  It feels like God was truly taking care of Hunter because now that he's got the tracheotomy any junk can be suctioned out instead of relying on his weak muscles to cough it out.

Yesterday brought a pleasant surprise along with some new challenges.  His arm and leg movements finally started to get stronger.  It was really fun to see him advance in what he could do on his own.  He sat on the side of the bed unsupported for twice as long as the day before as well as being able to slide his arms and legs by himself.  Very exciting to see progress.  Another element of Hunter's health that has been watched closely is his hemoglobin.  It has been trending down.  That tends to happen in a hospital when they are pulling lots of blood to test.  He isn't currently hemolyzing, so that's great.  Yesterday it got low enough that he got a unit of blood.  The hematologist also decided to start him on a shot to help boost his red cell production.  This probably goes along with having an active infection.  His counts should come up as his infection goes away.  They are also switching to pediatric tubes for blood draws to minimize blood loss.

I'm sure you already know this, but my husband is amazing.  I am so thankful that his mental status is back.  Even though he can't talk with his voice yet, he is very involved in what's going on with him.  He told us that his IV in his wrist was sore, and that he wanted it replaced with a midline that you could draw blood from instead of getting poked for blood draws.  Smart man.  He also told Mark exactly how he wanted a corvette ordered for a customer.  At one point we weren't paying attention and he wiggled his shoulders to rattle the bed.  He has adjusted really well to the trach.  Much better than I would.  We are getting better with reading his lips, and if we don't figure it out he will spell out what he needs.

Fresh out of surgery.  How he managed a smile is beyond me.

Before he went down for his trach taking a tiny break from the bipap mask

His eyes.....this is the look we'd seen the last 5 days of confusion.  So thankful he's with it now.

still smiling

practicing sitting on the side of the bed Wednesday during rehab

With my parents and siblings both here Monday, Erinn and a host of others took over the boys.  Ernie kept them overnight at our house and made all the arrangements for them to get rides to school.  Over the weekend she and Bo got Caleb's toddler bed converted into his big boy bed.  He was very proud of his new sleeping arrangements.  Friends took them to and from school.  Tuesday afternoon Dad, Zach, and Nathan left for Abilene.  Poppa took back over our guys.  Michelle and mom stayed here.  All week they waited in the lobby, rubbed shoulders, drove me to and from the hospital, and fixed meals.  Every once in a while they would poke their head into Hunter's room, but for the most part were a precense.  Nights alone are really tough, and I was so thankful that they were there for me.  Mark and Jana have each other to lean on, so they were a great source of comfort during this hard week.    

Poppa managed the guys just fine without mom.  Benton had several playdates after school with friends.  Caleb and Clayton stayed at the Tidmore's house Monday, Wednesday, and Friday.  They have had an absolute blast.  Heather has been incredible to take on and love two extra busy boys this week.  It has truly taken an entire team to get through this week.        

best friends a girl could have

good cheerleaders these two

swimming in October....lucky ducks

after school playdate with Leighton

 So this summer Benton got into a bad habit of throwing fits.  We tried several different consequences and the most effective thing we found was losing toys.  He lost his costumes a while back.  I told Ernie this week to get them out.  He was a happy boy.  Nathan, Katie, and Harper were over and he didn't want her to feel left out.  It has now been over five weeks since we have spent any time with our kids.  I hate it.  Benton knows exactly how long we have been gone.  I know they are happy and settled without us, but it is just tough to be apart from the life we lead at home.

cute little ninja turtles:)

Might have also bought him a little prize at Target 

little studs

Headed to school

And this sweet profile would be my 2 pound 10 ounce niece.  She is gaining weight like a champ!  Keep praying for Sadie and Macey:)  Today is 27 weeks, 2 days.  Miracle baby girl!

This week has been a lot to process.  In addition, today we learned that the culture from his lung pneumonia grew MRSA.  This is not ideal.  He was already on the correct treatment and will continue on the antibiotics for it.  His chest x-rays show improvement in the pneumonia.  We pray that it stays this way.  He had an appropriate response to the blood transfusion and his hemoglobin will hopefully will continue to go up as his pneumonia clears.  His gains in movement are very encouraging and his doctors feel like things will go up from here.  Today he also had a procedure to get a feeding tube directly into his stomach so we can pull the one in his nose.  It and the trach are easily reversible when he's ready to breathe and eat on his own.  Please pray with us that we have resolved all his medical issues and can move on to concentrating on rehab.  I would ask that you join me in prayer for his pneumonia and breathing to clear up, for his nerves to heal, and that his muscles will wake back up.  Also, we all need prayers for strength and mental toughness to fight this battle.  We are anxious to add MRSA to the list of things Hunter has conquered.  I've asked Hunter what his main prayer request is right now, and his answer was that his healing moves quickly.  Lord, please heal Hunter, and soon.