That visit was followed up with 18 days of wonderful!! I spoke with our NP at Stanford on Friday and she told me that due to his declining health, they have removed the antibody void {A1.. found in 24% of the population} on the UNOS database. So that will open up the donor pool for Owen. I don't really know how much it will help since he has a less common blood type of B+. But at least, that's one less restriction when a donor heart becomes available.
I let our transplant team know how great he has been doing. More energy, getting stronger, tolerating increased calories, ect.... and that we would leave the Milrinone therapy option open on May 3rd. May not be a done deal if he is doing great.
I just got our airline tickets booked, hotel reservations made, and found a smokin deal on a rental car. I am ready to see what this visit brings.
Then today, out of the blue, Owen is feeling tired again. It could just be a fluke, but he is back to his baseline. Sitting around, not playing, not wanting to go outside, ect. Such a bummer, but I hope he is just having a down day and that we'll see his wilder side again soon.
It is such a roller coaster and I know I over-analyze every little move he makes. I feel the pressure of not missing a thing, I can't let him decline and not notice or act upon it.
Please continue to pray and send good thoughts our way as the next three weeks will pass quickly before we find ourselves back in Palo Alto. I don't know what the future holds.. hopefully a new, healthy heart for O. Man.
In the meantime, we continue to enjoy our time at home. We had a big family party this weekend, a great few days of therapies, and now we have a pretty chill week ahead. I am still waiting for that big sign that tell me 'THIS IS RIGHT!!' Do I stay in Palo Alto and do we start Milrinone therapy? Or do we come home and continue to wait and enjoy life?
And just for fun.. I found this video the other day and love it so much. Owen was about 2 1/2 when I took this video. He has come so far!!!
7 comments:
Praying for Owen and your family
Leanne
oh andrea, that just wants to make me cry seeing his sweet face and how far he has come through the years, he is amazing! his little voice is so sweet as well!
Such a Sweet video, I remember it well.
This decision must be really tearing at your heart and consuming your thoughts. I understand the feelings.
I will Pray for your decision and the Doctors and Perfect timing for everything.
Hug for Mr. O from me.
Continue to pray for Owen and your family.
The way he scoot on the floor it reminds me of my son when he was 1 1/2 years old. He used his bottom to move around all the time.
Thanks for keeping us updated! God Bless!
Nelda
Don't push it waiting for a sign BEFORE you go since the confirmation you need made come AFTER he goes. Good luck.
I have followed your blog for years now and feel like I know your family just a bit. I'm hoping the best for you and your little O Man. He is a darling boy, from the looks and sounds of things. You are an amazing mom and I just don't know how you do it. I guess you do what you have to do, right? Keep up your great attitude, listening to your gut and the rest of us will keep hoping and sending you good thoughts! O Man...what a trooper!
Praying for your entire family!
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