Tuesday, November 13, 2012

Day +220

I'm just overcome with emotion lately as Jacob continues to take steps, large and small, toward healing. Thank you for your continued prayers. His adrenal gland function (cortisol level) came back in the low normal range, so he gets to stay off his hydrocortisone suspension, which, according to Jacob, is "the yuckiest medicine in the whole wide world!" So we are both very grateful that he does not have to take the yuckiest medicine in the whole wide world any more.

 Probably the biggest news I have to share is that he had his central line surgically removed 8 days ago! Since he had to be sedated, it was one of those no food, no drink days and his surgery wasn't scheduled until around 2:45pm. It was an incredibly long and emotionally draining day. Although it is a small, outpatient surgery, any time he has to undergo starvation and sedation, I worry. One concern was that since his adrenal glands were still a little sluggish, I thought maybe his blood sugar would plummet without being able to eat for so long. And then of course, there are always the risks of going under sedation... and then I worry about infection in the wound afterwards. Unlike Seattle Children's, where they let me stay with him until he was asleep, Kaiser took him from my arms while he was still awake. I'm grateful that he wasn't crying out for me this time like he has in the past at Kaiser, but nonetheless, I still felt my heart being torn out as I had to pass him over to the nurse and she carried him through those large double doors that I couldn't follow him through. Then they escorted Josh and me to the waiting room where minutes felt like hours and I had to remind myself to breathe. I really hope this is the last time he has to be sedated. It's such an awful experience to have to put your baby through. When we got home that night, Jacob scarfed down 3 whole slices of cheese pizza and I was able to throw out four boxes of saline and heparin flush syringes... no more line care for me!  Yay!  The surgery was successful and Jacob got to take his first bath without having to wear press 'n seal over a big ol' dressing!  He was a little nervous about getting his chest wet at first, but now, a few days later, he is a seasoned little "swimmer," lying flat on his back in the bath.  The line removal has been a huge physical and emotional step toward accepting his cure.  I remember last year when his first transplant had failed and his doctor wanted to remove the line, I told him no, and that I only wanted that line out when he was cured.  We accomplished that miracle!  He is cured and his line is out!

Here's what Jacob's central line site/dressing looked like.  
Imagine a 2-4 year-old having to live with that thing for almost two years!
It was a constant concern for infection and/or being caught and yanked on, 
not to mention the daily flushes & locks, and the weekly cap changes & dressing changes.

Bye, bye, central line!  
Thanks for saving us 19 months of pokes and pricks!
You were a life-saver!
(Yes, we did keep it.)

 Jacob just finished his last weekend of Bactrim, an antibiotic that prevents pcp pneumonia. He was at risk for this infection both as a CGD patient and as a BMT patient, so he has been on this medication since he was diagnosed at 15 months old. I can't believe we are finally done with it!! It is a pink medicine, so we used to tell Jacob it was called his "pinkies" medicine, to make it sound fun. But honestly, it is not a "fun" medication, and I'm so glad to be done with it. Not only is it hard on the kidneys and supposed to be taken with plenty of water (try explaining that to a 4 year old who doesn't like eating or drinking), but it is one of his medications that makes him photosensitive, which means he has to be careful in the sun to avoid skin cancer. We mostly just keep him indoors, or else play outside around dusk, when there is plenty of shade. When he does have to be in the sun for more than 10 minutes, he has to wear sunscreen. He still takes one other photosensitivity causing drug, not to mention the transplant itself makes him photosensitive, but coming off Bactrim is still progress! 

 My last update on Jacob is a little more technical for my BMT-seasoned friends. His last iGg trough level at the beginning of November was 430, so we are still getting monthly infusions.  He needs to be above 600 before we can stop getting ivig infusions. His immune system is slowly recovering, but the doctor already committed him to another infusion in December, especially it being cold and flu season.  These infusions take about 4 hours from start to finish, and the biggest bummer about it, is that now without his central line, he will have to get a peripheral i.v.  Not to mention, he will be getting poked for every blood draw now.  Thankfully, though, he is going 6 weeks between doctor's visits.   :)

Having so much time off from doctor's visits has allowed me to shift gears a little around here.  I'm finding I have a lot of extra time that I have to figure out what to do with.  A couple of things we started are karate lessons and art lessons for Ethan.  I finally have the time to commit to taking him to activities.  It's fun feeling like a "normal" family. :)

Ethan showing off his karate moves

 Ethan's first art piece

Also, Ethan had a speaking part in his Veteran's Day assembly at school!  It was so fun to be able to attend with all four of his grandparents and his auntie, uncle, and cousin!  Grandpa Taylor is sitting on the stage as a veteran.  We are so proud of our veterans!  Thank you so much for your service and sacrifice for our country!

Thank you for your continued prayers for Jacob's healing and for our family.  We are so grateful for each and everyone of you who has helped us through prayers, kind and charitable deeds, encouraging words, and countless acts of service.  We are truly blessed and we feel of your love.