Mylin’s Angry Pancreas

1 week from tomorrow is THE Surgery!! Also had our Palliative Care appointment today.

I can’t believe we’re literally a week out from surgery. We are busy here, wrapping up all of our to-do lists, trying to pack, getting our house ready for a whole slew of amazing people that are gonna be helping with our dogs, racking our brains to ensure we don’t forget anything, making sure we have all the things Mylin would need at the hospital, and also finishing up boat loads of work before we head out. I actually have a 12 1/2 hour day myself tomorrow. Then we fly out at 6 AM Wednesday, the day after tomorrow. 

We had our appointment with palliative care today.  the doctor was just amazing! It was such a breath of fresh air to have someone so kind, knowledgeable, empathetic, and who really wanted to listen. The thing that really got me is that she told us that she wanted us to know she’d be typing the entire time during our appointment. She said this was because she wanted to have notes that were in the patient’s own words. She said that she did read over some of Mylin‘s case and although the doctors notes and files are important, the most important piece to her is hearing the story and the explanation of pain from the patient in their own words. I was so thankful the moment I heard that. She was so attentive. She explained things really well. She told us about her schedule and what we could expect. She also said that she is more than happy to be part of our team and a Help bridge that gap between Ohio and California to ensure that Mylin has continuous coverage on whatever pain medication they may need along the way. I am so thankful to have that box checked off my list, and even more thankful for what an amazing person she was! When we ended the appointment, I asked her to please thank her receptionist for us and told her how absolutely wonderful I thought the receptionist was. If it wasn’t for her, this appointment wouldn’t have happened today, and we would’ve been missing that part of our homework that we needed to do before surgery.

We also finished up almost all of our work for COTA. Mylin’s page should be up and running by mid to end of this week. That will mean we can start fundraising. For those of you that may have missed it, COTA is the children’s organ transplant Association. It’s an amazing way to hold a fundraiser in which we get to keep 100% of the proceeds. They also do some of their own fundraising so when you hit certain goals, they will give you bonus money for your fundraiser. This money only covers anything to do with the transplant surgery itself. This would be the surgery, doctors follow up visits, medications, diabetes care/gear, travel, lodging when we are there, car rental when we’re there, food when we are there, and any loss of income. We are definitely thankful that we will have a way to raise funds as it has already been so insane with the two times we’ve been there, then having to extend the trip last minute, as well as the last visit and the one we’re about to do being booked only two weeks in advance. Then, of course, we will also be traveling back for all of my lunch check ups, which is once a month for the first year. Then it goes to once every three months. Then once every six months, and eventually just once a year. Any money that isn’t used for the TPIAT and associated medical expenses, if there are any left, will be used towards all of Mylin’s future medical care. So basically saying, the money will go only towards medical expenses. They ensure this by having us file all receipts through them. They also have us do lengthy paperwork and personal information stuff before we’re even OK to be part of the program.

We seriously can’t believe that the surgery is only a week away! Next Monday,  Mylin will check in and undergo a bunch of labs and visuals and have doctors appointments and get all the surgery prep done. They will then be admitted and have the surgery the next morning. The surgery is usually about 12 to 16 hours. They did tell us due to the extent of Mylin‘s illness to expect the longer side of that.

I will update if there’s anything before then otherwise I expect to pop on probably Monday or Tuesday again. Thank you all so much for your support!