Patrick is exactly seven weeks out from the day his transplant started, and while there have been a lot of improvements, exceeding doctors' expectations, and successes, there have also been a lot of disappointments. They seem to be on the forefront of our minds lately.
Patrick is barely sleeping. He has nerve pain in his right hand that keeps him up at night. He was given pain medicine and a sleeping pill but they don't help. He has to make the choice of being kept awake by the high from those medicines, or being kept awake by the pain and discomfort in his arm. He has chosen not to take the medications, which to him are just additional chemicals being introduced to his body that don't help him.
His providers are in the process of trying to push him through the pain management system at UW but Patrick is in line with likely thousands of people who want to get an appointment, so we have no idea when it will happen. I selfishly want it to happen before we go to see him in late June. A perfect scenario would be to visit a Patrick who is well rested and healing.
As it stands, he is healing but painfully. He says everything hurts - his hand, his sternum, inside his chest, and where he had a biopsy a couple days ago. He isn't supposed to sleep on his side because of where they went in through his sternum and how that needs months to fully heal. But sleeping on his side is the only way he can get an hour or two of sleep. It's hard to balance wanting rest and waking up in intense pain because his chest hurts.
The biopsy he had on the 16th came back again with No Significant Rejection. The results state there hasn't been a change since the last biopsy, which is great news! But again, it is overshadowed by how exhausted Patrick is.
The paint night fundraiser organized by our friend and the owner of Alaska Art & Soul was a great success and a lot of fun! The kids and I arrived early to help with setup and it was fun to help everyone get checked in and to get them the projects they had signed up for. I did tell a few who I was, but honestly I'm a fly-under-the-radar kind of person. That's nearly impossible being Patrick's wife since he is a look-at-me kind of individual. But sometimes I crave anonymity.
We also had the last planning meeting last night for the Mexican food fundraiser happening on Saturday. The kids and I will be in attendance for much of the day. We have a track meet the morning of the fundraiser so won't be there until after about 1pm. I am looking forward to seeing everyone, and to see so many people who love and care about our family working together. Our village is big and miraculous, and we never lose sight of that.
A big thanks goes out to our friend Jim in Seattle, who has tirelessly been Patrick's advocate and caregiver for the last three weeks. We feel the end of Patrick's need for a companion arriving, but want to acknowledge all that Jim has done for us. I am intimidated by the thought of Jim "passing the torch" of Patrick's care to me, but also feel that Jim has done a wonderful job at setting up that process so we will be successful. Jim, you are part of our family now. As Patrick says, you're stuck like Chuck.
I was telling Patrick this morning that this has been the busiest week of my life. I can't wait for school to end. The shop schedule has been a complete mess for the last four months, and I'm ready to delete the 5:45am alarm off my phone.
For everyone who has reached out, given support, and been a shoulder to lean on over the last month and a half and beyond, our thanks knows no bounds. I am eternally grateful for our village and our support network, and simply can't express enough thanks for how much it has all meant to me.
... Especially those of you who tirelessly stress self-care! The amount of grace and thoughtfulness extended to me over the last few weeks has been mind-boggling. From cancelling appointments to deciding on random days to not open the shop, my self-care has taken on many forms. Sometimes its spending an hour on my phone doing absolutely nothing. Sometimes it's putting Samuel to bed early so I can stay up watching true crime documentaries. And sometimes it's phone calls where I lay my heart out bare, thinking out loud through the tumult and unrest my mind exudes every day.
Thank you, thank you, thank you. We could not have successfully navigated this journey without our family and friends.
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