Sunday, July 10, 2011

Day +86

I only ever feel like posting when we have good news, which is why it has taken so long for an update, so I apologize. I know a lot of you are worrying and praying for Jacob and our family, and we do appreciate it and want to keep you informed of the details. The good news on Jacob right now is that he is back up to his caloric goal getting formula through his NG tube. He had lost a bit of weight, so it's good to nurture him back to health. Other good news is that he hasn't thrown up for almost two weeks straight (knock on wood). The latest bad news is that he seems to still be rejecting the graft. The other CGD patient who had the procedure just before Jacob had 100% donor cells when he got discharged (lucky), and Jacob is down to 29% right now. It's depressing how one thing works for one patient, but not for another. The immune system is so complicated, even the doctor admitted they are still learning the intricacies of it. They are going to test Jacob again on Thursday to see if he is still trending down now that he's been off immunosuppressants for a while. If he is, the good news is, they can give him a boost of stem cells from the donor. The bad news about that though, is that this hospital has never done this procedure before AND that Jacob's graft versus host could flare back up, starting us over from almost square one. So as you can see, we have ups and downs almost on a daily basis and it's very emotionally exhausting. I get scared to get hopeful any more because every time I do, we get more bad news. Ethan starts kindergarten on August 8th and I feel so bad I'm missing out on so much of his life lately, that weighs me down with guilt. I see him only 3 days a week and there is no end of this situation in sight. There's really nothing more I can do though. We are managing the situation the best we can with the help and support of loved ones. It's just taking way longer than we ever imagined. A lot of people ask if we are getting any idea of when Jacob will be able to go home, and the answer to that is: nobody knows.

5 comments:

DIY REDS! said...

Wow. That is a lot. I hope that things become more clear and that the doctors are guided. You are in our thoughts and prayers.

The LeVangie Family said...

Praying for you guys! Remember, if you need anything we are just down the street.

Unknown said...
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Bredsguard Fam said...

Hang in there Kylene! You're a great mom and you're doing a great job! Lots of love and prayers for all of you!

Sally said...

We know how emotionally draining being split apart as a family is. It's so hard to want to be with your sick child in the hospital all the time when you're with the child at home, but the minute you get to the hospital you just want to be back with the child at home. There is no win-win on this one. You are in our prayers and I know the Lord can bridge the gap you feel right now. Much love.