May 22, Day +26, DNA results:)

Sorry for the lack of blog posts the past few days; we've been logging lots of hours sitting at outpatient clinic and then surgery yesterday.  We were told to expect our clinic visits to take anywhere from 3-8 hours, and this week we've been close to the 8 hour mark for both Monday and Tuesday.

After a really rough weekend for Hunter, we had several concerns for Monday's clinic visit.  He was in a lot of pain from abdominal cramps and his left arm was still extremely swollen even after his PICC line was pulled on Saturday.  Right away it was determined that magnesium pills would not be an option because they can cause diarrhea and cramping.  We sure didn't want any more of those.  So, we ran back into the port issue.  Hunter didn't get any magnesium Sunday because he had no line.  Monday's number were extremely low and no surgeon would take him when he was deficient.  He got an IV started to remedy the magnesium count.  We also needed an ultrasound to check both arms, because Dr. Carrum suspected a clot.  We finally got in to ultrasound at 2:30.  The right side looked good, but the swollen left arm showed a partial clot under his armpit.  There was still blood flow around the clot, but he was started on a blood thinning injection twice daily to prevent more clots.  Surgery was set up for first thing Tuesday morning.  We got back to the RV about 4:00.  It was a long day for Hunter.  His arm looked pretty sad after a blood draw, failed IV attempt, then an IV line that worked.  His WBC was 5.19, which was his first day in the normal range.  Yay Hunter!

 Tuesday morning we reported for outpatient surgery to get a new port at 6:30 A.M.  It was a little confusing going over his history.  He's had a left side port, right side port, left arm PICC and now was getting a right side port, all within the last 5 weeks.  They were very good at keeping him isolated from others, but the general surgical floor is a scary place to be with an immune deficient patient.  The nurses and doctors were really good about being clean and keeping a mask on around Hunter.  He kept his mask on the entire day, except for when he was actually in surgery.  He came out of his surgery really well, and once he slept off his anesthesia he was hungry and ready to go home.

Hunter is down to very little body fat, so he gets cold very easily.  RV thermometer is set to a balmy 82.

His appetite and taste buds are coming back slowly.  We have made a sonic carmel ice cream or cherry icee run almost every day.  He also had a few very strange cravings yesterday.  I think I can understand a little of what a husband of a pregnant wife goes through;)  Poor Jana grilled a delicious meal the other night, and as soon as she brought it inside, Hunter knew he would be nauseous if he ate it.  He can't help it, but it's hard to figure out what he will feel like eating!

That's his magnesium infusion ball sitting in his lap.  Pretty handy and convenient!

Tuesday's randoms.  

The boys have been busy back at home.  They were a little under the weather with a virus, but nothing was going to stop them from spending the weekend with their G-Daddy.  They were so happy to see Mark, and requested to go to G-Daddy's farm {on repeat} until they felt good enough Sunday.  First thing Saturday morning when Caleb opened his eyes, Mark was laying beside him on the floor and Caleb told him "I wuv you G-Daddy."  Jana and I were a little really jealous.  The twins are enamored with all things tractors, so they drove by the John Deere lot, then played with G-Daddy's tractor.  Little boy heaven, for sure!

Clayton says "wow, big tractor"

Monday night was Benton's end of school program.  It's always a laughter filled night when you gather pre-school kids together then put them on stage.  Last year Benton spent the whole time waving at those in the audience, but Mom said he did sing his songs this year.  I love that sweet angel!  His brothers happily snacked and played on phones the whole time.

Sweet ladies, these two

Clayton is checking out Benton's scrapbook from his year in the 4's and Caleb is sucking his thumb.

Today's clinic visit went really well.  Hunter's right side of his chest is sore from his port surgery yesterday.  He got his bandage changed, got his magnesium infusion, and tried to argue his way out of his blood thinner injections.  He failed, but should only have to take them for another week or so until the level of an oral blood thinner builds up to the appropriate amount.  Our doctor said we are on to the "titration" phase where they start to slowly {very slowly-like over the next year} wean off different medications.  It's a balancing act for sure.

Hunter will start on one magnesium pill twice a day.  This is not quite enough to balance out what the Prograf eats up.  Once his diet and appetite return, he will be able to get more magnesium from different foods and pills and not need his central lines.

His WBC today was....are you ready for this....10.50.  Normal is anywhere from 4.5 to 11.  His platelets were at 214.  Normal is 150 to 400.

We also got the results of our DNA chimerism test.  Hunter is 100% donor.  This is more than what we were told to expect, but God obviously had different plans.  He has guided and protected Hunter his entire life, and now Hunter will learn how to live anew without CGD.  God is good.  I have no doubt that heaven has been bombarded with prayers from all of Team Hanner on Hunter's behalf.

Many of you have asked, "If his WBC is normal, why aren't you home?"  The answer to that is very long and complicated and filled with medical terms I'm not qualified to understand.  His doctor called him a "half cooked chicken" right now.  As long as he is on his anti-rejection medication {Prograf} he can't mount a normal response to an infection.  This medication supresses his body from rejecting his new donor cells and tries to prevent graft vs. host disease (his body attacking the new cells).  But, Prograf  also acts like a "shield" or "net" restraining his immune system from attacking foreign invaders.  Whereas before with CGD Hunter could recognize but not kill bacteria and fungus, now he can kill bacteria, viruses, and fungus but his body does't really respond to the invaders as threatening.  Clear as mud?  We don't want his body to reject the transplant, so he is on Prograf until they are sure he doesn't show signs of GVHD.  This is a 3-12 month process weaning off Prograf.  He also lost all his prior immunities to viruses and has to be re-immunized in about a year.  So, his immune system is not even functioning as well as an infants right now.  It will be over a year before we start to look at him as normal.  We have a long road ahead of us.  As long as he's on Prograf, he will need to stay on antivirals, antifungals, and antibiotics.

We are blessed to have received so much good news.  I know I've said this before, but this process is so full of ups and downs.  Hunter is doing amazing.  It's hard not to want to be further down the journey to recovery, but I guess we are learning patience.  Please continue to pray for Hunter's protection from infections, for him to get stronger every day, to get his appetite back, and for strength for Jana and I to take care of his ever changing needs.  He would also add to pray for this port, so that we can keep it for longer than two weeks.

Sorry for this novel of a blog post, that'll teach me for not blogging in several days!