Saturday, May 5, 2012

Back home...and better

It's about time I give an update to the last post.  Sorry to leave everyone hanging...I just read it and realized I never even wrote to everyone that we got to go home!  They only kept him just the one night, basically for observation and to run all those tests.  First off, I have to thank everyone who said a little prayer for Jacob and his heart!  I was so worried about that echocardiogram.  But guess what!--his heart is doing fine! The test was completely normal and he has no problem there! I'm so relieved and so completely grateful for that one little (well, kinda big actually!) gift of good news.  It's actually amazing to me considering that during his 7 months of treatment, he had high dose toxic chemotherapy drugs pumping directly to his heart through his central line.  His heart acted as the pump to distribute the chemo and so many other harsh medicines throughout his body.  Medicines and chemo that burned, scarred and damaged his lungs, but somehow left his heart alone! It baffles me, except for the fact that I prayed for his heart almost every day while he was in treatment...and I still do.  And, I know that countless other people have lifted him up in prayer every day since he was diagnosed...and still do.  ...thank you!

We were sent home on Wednesday after all his tests were completed and results showed no new surprises. They never really gave us an explanation for why he was having so much trouble with his oxygen levels, but decided to just give us access to more oxygen to help him through.  Somehow I wonder if they just sort of expected this to be the case when he tapered down low on the steroids.  They are concerned, but apparently there isn't much more they can do about it.

We came home and got the call from the Home Health department to deliver our prescriptions and new oxygen supplies.  They came and swapped out his old condenser that could deliver up to 2 liters for a new one that goes up to 4 liters.  We got a new supply of longer tubing so he can get all around the house and stay on it during the day without having to switch to a tank. (but this leaves him attached to a cord all the time...ugh!)  The coolest thing they gave us is a new "regulator" that goes on his tanks and some super small tanks that fit in a backpack or better yet, his "camel back" backpack! This has made all the difference in the world!  It's pretty incredible what a constant & sufficient supply of oxygen can do for a kid. ...and, Amazingly enough, he doesn't seem to mind at all having to pack it around with him everywhere, all the time.  (that would drive me nuts!)  I think he's just so glad to feel better that what the heck, he'll take it! He just packs up that little camel back and he wants to go hang out with friends, practice Lacrosse with Joshua in the backyard, go to the skatepark or take a walk.  The change in his energy level has been amazing. It's hard for me to see him having to wear that little nose tubing across his face and around his ears all the time, but it helps so much that I'm just grateful.

We don't know how long it will be like this for him, but we are hoping and praying that this is just a bump in his road to recovery.  We're hoping that his lungs just need some time to "adjust" to the lower doses of steroids until his body learns to start making it's own hormones or whatever it is he needs to keep the inflammation down.  We have been told that his lungs have irreparable damage and scarring that will always be there for him, but they wouldn't know how inhibiting this would be until he is completely off the steroid support.  I'm just hoping and praying that this is not it and that he will get better as he becomes more and more active and as he grows.  His lungs still have some growing to do, so we hope that the new healthy lung tissue that grows for him as he gets older will compensate for the loss.   In the meantime, we'll support him with all the extra oxygen he needs and be thankful for the world of modern medicine we live in that can supply him with it!

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Thank you so much for reading our story. It means so much to me that people care enough to follow us and share in our journey through Jacob's treatment and recovery. Please know that I read every comment and I treasure every one! I may not have time to comment back, but I will keep writing and sharing our story.