It has been a good 24 hours. They have gone up on his IV milrinone to .5. At this level he now qualifies for status 1A on the transplant list. As long as he stays at that level on the IV, he will remain a status 1A. Since yesterday he as responded well to the IV, he has eaten more, has not complained of any tummy aches, and has gone on several good walks.
At about 1:00 today, he was transferred up here to 3 West room 3241. Yes, the same 3241 we were in for over 8 months with Lindsey. So many memories in this room. A crazy sense of being at home. Crazy, I know. Anyway, the hope is we will not be here long. If he does well on this level of milrinone, he could be discharged to the RMH on the IV. If he does NOT do well they will pursue the Heart Ware devise. It's kinda like the Berlin, but smaller, internal, and he could go to the RMH on it. More on that as we know more.
Anyway, Sierra, Megan and I drove down yesterday and plan to fly back on Saturday. Sierra had diabetes clinic and biopsy tomorrow (Friday). Of course we are hoping for a zero, and good heart pressures. If we have good results they will decrease the predisone a bit more. We will just have to see.
Hunter and Lindsey are home with my parents. They would love to be here with us, especially since we were moved into Lindsey's old room.
Tonight, Megan played basketball with some of her old friends. It was a fun night for her.
Looking long term, Stacy and I are looking at options. Do we relocate the entire family here to the RMH and enroll in school? If so when? Or do we have the teenagers stay home and I travel back and forth? Right now we are just looking at all the options. The best time to move the kids here would be over Christmas break, so we have some time to see how Gage is going to do.
I wont lie, this had been a hard thing to accept. It has been tough and emotional on our family as we watched Gage get sicker and weaker over the last several weeks. Many times we just wanted to deny anything was wrong, and wanted to continue on with our normal lives in Oregon. Now we have to accept it and prepare for the worse and hope for the best. Fortunately (or unfortunately) we have done this before, and know what to expect. That is good but also a little discouraging to know the tough days ahead. But ya know, we got this.
Met a few families going through some rough times. Every one here has a heart breaking story. Some of these families don't have the options like we do. Life just isn't fair sometimes.
The scouts and other back home cut, split and stacked our firewood. Very nice of those boys.
Thank you to all the thoughtful comments, prayers, concern, and support. We are in this for the long haul and are grateful for all the prayers and support. Thank you.
Till next time,
Jason
On our way to 3West
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7 comments:
Thinking of you!
If anyone's "got this", it is you and Stacy. Amazing strength and fortitude.
We are lifting your family in prayer every day. You all are on our minds and in our hearts, even though we have never met. Just having the connection of a child having heart transplant is enough to feel empathy and understanding of a bit of what you all are going through. May peace fill your hearts and guide you. Love and hugs, The McCord Family in VA
Prayers for yall. God Bless.
So great to finally meet you guys. Go Gage go!
That was such a beautiful photo stacy posted of Gage with his two sisters in her last post!!!! The one thing I c an say at this point is that you know the lay of the land and are familiar with your surroundings and protocol. That is comforting at least. Gage, we all know, is receiving the best care possible. He truly has the most competent medical team involved with his case. Thank god for that! Hopefully Sierra got through her clinic today. Please know your family is in my prayers. Sending prayers an love from Central NY, Jennifer Cavanagh
My thoughts and prayers are with the entire family.
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