On the plane flying back to California. Good to go home for a week. Got a lot of work done at the office, but by no means caught up. Tax season is in full swing, and I need to be there to give direction regarding my clients. I brought a bunch of work with me and ready to attack it on Monday. Neat to see so many people who have supported and cared for us.
Still a strange experience being in our house. Very quiet,
everything in the same place I left it a month ago. But this time it’s
different. I can actually see a possible end to this. A day we might actually
be there. My outlook has changed now that Lindsey has had the transplant. It’s
not this vast open sea of endless waiting, we can actually see the possibility
of going home. The big question is
Sierra. Are these treatments working? Will the antibodies back off and quit
attacking her heart? What if it is not an antibody issue? What if it is her
coronary arteries? What if..what if..what if?!? I sure wish the doctors would have shown more
confidence that this will work. All I
can do is have positive thinking, faith in His plan and timing, prepare for the worse, and
be grateful for what we have.
Last week Sierra and I had a ‘worst case scenario ‘ talk. So
what is the worst, worst, worst case? Another transplant. I know this sounds crazy, but we could do it.
Sierra is a teenager. More teenagers out there do stupid things making them possible donors as opposed to 9 year olds.
I know a bunch of crazy teenagers back in Oregon that are flirting with being
donors. You know how you are. Also, Sierra is a type A blood making it easier
to match up than someone with O blood (Lindsey and Gage).Crazy, but Stacy and I don’t have that ‘deer-in-the-headlight’ look when you mention transplant, Stanford, LPCH, and Palo Alto. We know the system (much to well). We know the doctors, surgeons, and social workers. We know what the commitment is and how a transplant works. We have a great support group in California and Oregon.
Dr. Bernstein told us out of the 300 kids they have transplanted, about 15 have had to be re-transplanted. That’s 5% (there's the accountant in me). He didn’t know or wouldn’t say how many have been re-transplanted as adults. I am not saying it going to happen, nor do I want it to happen. This is just my way of preparing for the worst. Anything worse than this is incomprehensible. We know of kids who have passed away from complications one of which had problems with the coronary arteries.
Her biopsy on April 4 will tell us a lot. They will look at
her heart pressures and coronary arteries. They will know those results immediately. They will also do the usual tests for
rejection which take a day or 2 for results.
Ole’ Dr. Perry could walk out and say everything looks fine, take a
cracker and walk off. Or he could say there are issues. Remember he is a man of few words, but we
love him and the excellent work he does. I have stopped trying to guess the results of biopsies. There have been so many times Stacy and I
were sure there were (or were not) issues and come to find out everything was
fine (or not).
So there you go. I trust in the doctors and their judgement.
I have to, the human body is so complicated. Everything will work out. I’m not just saying that, IT WILL. Many years
from now we will look back and hopefully be able to understand and see the big
picture. For now we hang on and push forward.
Stacy says Lindsey is doing well. You can see in the
pictures the cute predisone cheeks. In the next few weeks Lindsey will be so puffy
you will hardly recognize her. We will need to buy bigger clothes for about
the next 6 months, then as they turn down the steroids, the puffiness will go
away and ‘Lindsey’ will return. Just
know it is coming. She did avoid the hairiness.
The seizure she had related to the medicine made sure of that. The replacement
medicine does not have the ‘hairiness’ side effect. Her blood pressures have been under control,
so that’s good. But one of her blood pressure med's is causing her hair to fall out. So we are addressing that.
I am planning on being here a week or so, then heading back
for another week. Tax season can be very
demanding and hard on the family, even when we are in Oregon living like a
‘normal’ family.
My parents are hangin’ in there. I know this has been tough
on them. They have lived next to our house and for the last 8-9 months, they have
looked at an empty house, just sitting there, so quite. Occasionally their son (the good-lookin' one)
comes home and eats their food and drives their car, but then he leaves and
it’s back to the quiet. Soon there will be kids running around livin’ it up!
Having said all this, I am very excited to see the family.
For the first time since May 20, 2012, (286 Days ago) Stacy and I will actually have the
entire family under one roof all night
long. You can sit there and think
about that!!Boys on the floor, Linds in the single, Megan covering her head, and Sierra with thumbs up.
5 comments:
Love this!! Good luck sierra ! You are so beautiful and positive! Yay lindsey in a real bed no tubes...exciting. Bless you all!
Jason,
I want you to know I read every post but I often just don't know what to say, it is at times incomprehensible the emotions you all have been going through. As a EMT we see a lot, heart ache and sorrow, joy and relief, we see how deeply effected the families are by the situation at hand that brought us to their home in the first place. Sometimes it is up to provide comfort to them when things don't go as planned. We are patents, we care, you ask anyone here what their hardest call is and you will always hear PEDS.
YOUR FAMILY IS AMAZING, you and your wife are AMAZING, your Heavenly Father loves you and there are angles among you night and day watching over your children, and your wife and you. Although this life is temporary sometimes are trials can seem to last a life time, why some are short and others are not...I don't know but I'm sure you have felt that you have had your share. You guys will get through this, your family has shown us all that. I want to leave you with a favorite quote that I love, It has helped me to find comfort at times. Love you Jason, you and your family, thank you for sharing this amazing journey with us.
The great writer Victor Hugo advised
"Have courage for the great sorrows of life and patients for the small ones; and when you have laborioursly accomplished your daily task, go to sleep in peace, God is awake."
what an amazing feeling it must be to have all your kids sleeping under the same roof! you're family is pretty awesome!
YEAH for family reunions!!!! How truly sweet they are in times like these! I am glad you could all be together in one place. Keep going and you will see your wonderful home all together again!!! Lots of love and prayers!!!
Reunited as a family sleeping under one roof is a blessing! Keep going, doing, believing, and standing faithfully strong and all things will happen with Him walking and guiding each of you. Trust in Him and his power and love that He has for all of you. Loves, hugs, and many prayers xoxoxoxo
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