It’s time for another update! And maybe a Mike's Hard Lemonade or two...
Firstly, Patrick is doing okay. He is holding steady at about 160 pounds but only because he forces himself to eat. He refuses to waste away. This also means he is sick much of the time, but he hasn’t let that stop him from making knives and ulus for our shop, or bringing our family to the fair.
There are a lot of things we don’t know yet, so if some of you may have questions, I likely won’t have answers. I will get into why that is in a moment.
Patrick’s initial transplant evaluation is scheduled for next week. Our pastor has graciously agreed to accompany Patrick. Not only are he and his wife where we turn when we need spiritual guidance, but they are also very close friends of ours. Since I will remain in Alaska running our business and taking care of our family, I am confident Patrick will have the care and companionship he deserves while he is away. The appointments coming up are important - another thing I will get into in a moment.
The unanswered questions regarding the timeline of the transplant will arise simply because there is so much we do not know yet. I find it easiest to visualize this problem as a set of bullet points.
• Transplant Evaluation
• Patrick Moves To Seattle
• Patrick Gets The Call That A Heart Is Available
• Transplant
• I Arrive In Seattle (Transplant Will Likely Already Be In Process)
• Recovery
• Patrick Comes Home
This is a very rough timeline, and it includes only the basics because they are the only details I know. And as you can see, they are very vague and very broad details.
As we move through this process there will be bullet points added. There may be bullet points removed. Some may be switched around. I am hoping to learn more next week during Patrick’s evaluation.
On Wednesday Patrick will have labs drawn followed by an appointment where they will discuss his caregiver support and social situation. This is one of the appointments where they require a designated caregiver to accompany him.
Then he has an appointment to discuss nutrition and how it will affect him both pre- and post-transplant. That appointment is followed by a CT scan that will either be of his brain or his brain and other parts of his body (I am unclear on this bit).
His last two appointments on Wednesday will be a palliative care appointment and a surgical consult. The description of the palliative care appointment says, “Our palliative care nurse provides support for patients and families dealing with the stress and symptoms of a serious illness. The goal is to care for the whole patient including physical, emotional, psychological and spiritual needs, and to improve quality of life.”
Then on Thursday he has a meeting with someone to talk about infectious diseases and how they can affect him pre- and post-transplant, and then a general transplant education meeting.
This is the beginning of a very long process. The journey our family is embarking on is going to be incredibly stressful and full of unknowns. We have known about the transplant evaluation for at least a week but I haven’t put up an update announcing it because it feels nearly impossoble a task to wrap my mind around what this means for us.
Because really - is a transplant a good thing or a bad thing? Is it cause to be hopeful, or scared? Again, how do we parent our children through this process?
How do I handle kids doctor appointments, dental visits, math tutoring, home schooling, public school schedules; AND doing what needs to be done to raise kind, honest, responsible humans; AND care for a husband living with a terminal chronic illness; AND prepare both for a life with him and a new heart, and a life without him?
And we have a dog.
And a house that needs work and maintenence.
And vehicles that might break down.
And two businesses to run.
Oh, did I mention being the emotional, physical, and spiritual support for my kids? Yeah, no biggie.
It may be redundant to say, but these are the things that keep me up at night.
We are on the right track. We are on the right track. One day at a time. One foot in front of the other.
It has taken a village to get us to this point. Thank you for being my village.