.........to going home, but not quite yet! That being said, you've probably already guessed that the biopsy results did not come back with that big fat "ZERO" we were all hoping and praying for. But, very close. Mason's rejection level is "1a". The same as it was 4 weeks ago. The is very very mild rejection and as you all know Mason's little body has experienced much worse than that, so......I'll take it. At least it wasn't a 2 or 3 which would have put us several steps backwards!!
Since clinically Mason is doing so well, even with a 1a, we're still making steps forward. He's gaining weight, energy level is great, echo this week looked wonderful, blood pressure is well controlled with his meds, getting stronger each day........so,I can't complain! Mason does still have a cough (from last week's sickness), but it's getting better and it has not affected his O2 sats at all. Still satting 97-98% on room air, even with a cough! Love it!
The plan: tomorrow Mason has an IVIg infusion treatment (He'll continue to have them every 4 weeks for several months and we'll be able to do this a Primary Children's once we go home.) We will be there all day, a long 14 hour day!!!! This is a treatment used to wipe out the bad antibodies that can cause rejection. After his treatment they will run DSA and HLA antibody blood tests to check for specific "naughty" antigens lingering in his blood. With the results of this (probably won't get results 'til Monday or Tuesday) Mason and I will sit down with the transplant team and discuss if and when we can go home.
There is a possibility the team will let Mason return to Utah w/ a "1a" if his antibody tests come back looking good. Good would be: no specific "naughty" antigens seen in his blood or maybe 1, but at a very low percentage. As much as I am very ready to go home, I also want Mason to be ready to go home.....so I'm putting my trust in those who know best, the doctors and our Father Above.
I'm tired. It's been a crazy day. Mason and I are officially moved back into the Ronald McDonald House. Well I don't know if you call it moved back in w/ suitcases lined up across the floor along with grocery bags of all of Mason's medical supplies, diapers, toys, and everything else we've accumulated over the last 5 months.....I can't see the floor......I don't even know where my pj's are......but we're here.......and I am going to bed!
Ps....Happy 31 months Birthday today to our Miracle Mason!
5 comments:
We will now do a little shift and begin to pray for the right conditions and the correct judgement of all doctors to send our little miracle boy and his mamma home to the comfort and love of the whole family.
Sending up many prayers that everything will come together for you guys and for Mason to finally kick this rejection in the rear end!
{{{HUG}}}
1a is great!! It's not zero.. but it's great! I'm so excited for you to maybe be going home soon. We'll be praying that those naughty antigens are gone and that you get the ok.
It sounds like Mason is doing awesome. I can't imagine what it would be like without any O2. Fantastic, I'm sure.
(hugs) and I hope to see you guys in October. ;)
I hope you got a good night sleep!
I keep praying that Mason's body will accept his new heart and that he will be as healthy as possible.
Praying for everything to fall in place so you can get HOME! I know how hard it is to be away, live at the RMH, and fully rely on God to provide because it is so overwhelming. I pray you find rest, comfort and peace while you wait for your return trip. And hopefully the CA fireworks for the 4th will bring a little joy to your day.
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