Mylin’s Angry Pancreas

It’s crazy to think we head back to Ohio and just eight days. A week from tomorrow.

We are hustling and bustling around here. Trying to get everything in order. Ensuring things run as seamlessly as possible both at home with our two pups and at work before leaving for three weeks. I’ve said it before, but I can’t say it enough I am so thankful for the help of friends and family who have stepped forward and really wanted to take some of the burden off of our shoulders.

Tomorrow Mylin has two doctors appointments here in SD. One is with endocrinology. An important appointment to make as Mylin will be returning back to San Diego with type 3C diabetes. A type of diabetes that has to do directly with the pancreas. We also have an appointment with the pain management clinic at Radys. This appointment is crucial to fulfill before we takeoff. Mylin will come back on some pretty intense pain medication’s, and some of those prescriptions don’t transfer from Ohio to California. Therefore, this appointment was incredibly important  to have as we move forward with everything. So we will be spending a good handful of hours at Radys Children’s Hospital tomorrow.

I know I shared a video from the hospital about the TPIAT surgery. However I thought I would share an abridged version of exactly what that surgery is here.

During the TPIAT surgery, a large incision is made on the abdomen. The stomach and large intestine are then moved out of the way. The appendix, spleen, gallbladder, and pancreas are all removed. In 30% of cases, the spleen can be saved. However, it is harder in patient who have severely atrophied and/or scarred pancreas. Once the pancreas is removed, it is rushed to a lab. It will then be dissected and worked on for about 5 to 6 hours. Parts of the pancreas are put into a shaker machine, think of it like the machine that they used to separate out red and white blood cells. They do this to extract the islet cells. These are responsible for making insulin. Once those cells are extracted, they are then put into a large needle. That needle is rushed down to the OR where they slowly aspirate the islet cells into the liver. Over the next year and about 30% of cases, the liver will begin to create insulin itself. This means the patient is no longer insulin. Independent. After the surgery and for 70% of people for the rest of their life, the patient is diabetic. This is a specific type of diabetes that directly has to do with the pancreas called diabetes type 3C. After that, there are parts of the intestine and stomach that have to be reworked. They also Botox the stomach in hopes to prevent frequent vomiting while the patient is healing.

As of now, they told us to expect Mylin to be hospitalized for at least eight weeks. Most TPIAT patients spend about 6 to 8 weeks in Ohio. Some of them do get to go over to the Ronald McDonald house and for the last part go back-and-forth between there in the hospital for their appointments. However, because Mylin is such an extreme case they told us to be prepared for Mylin to possibly be in the hospital the whole time and for it to be at least the eight weeks. 

Our last appointment there is either August 14 or 15th. My brain is getting a little fuzzy on some things.

As I said earlier, all patients come home, insulin dependent at first. Therefore, part of this experience is getting 12 hours of diabetes education. We did our first three hour session today. Daniel, Mylin, the twins and myself all attended. We will have 1 to 2 sessions tomorrow depending on how quickly she’s able to go through things. We do meet with a live instructor who is in Ohio on campus at Nationwide. It is so much information! I mean like so much. It definitely feels a bit overwhelming. However, I know between what our instructor has told us and other awesome parents who have shared their experience online, that they will also be walking us through a lot of this in the hospital and ensuring we are being told these things more than once so that it really sticks.

We also met with COTA, which is the Children’s Organ Transplant Association, over the phone today. They are a non-for-profit for pediatric transplant recipients to raise funds for their medical care. All funds raised will go only toward Mylin‘s care. Anything that isn’t used during all of our TPIAT experience will go towards Mylin‘s long-term care. The organization takes 0% of the money raised, and even offers a bonus if a certain amount is raised within a certain amount of time. A lot of people have been asking us how they could donate, and we’ve been waiting to be accepted by this organization. It also doesn’t go against income at all, so it’s absolutely the best way to go in our case. We will share that information as soon as we have it. We just reached out to a couple people to see if they would be interested in being organizers. That’s the one hard part is they don’t want the families and caregivers to be involved in the fundraising at all because they say we already have more than enough on our plate. It was tempting for me to give a fake name with a different email address and still try to run it myself but of course this wasn’t her first rodeo and she kind of called that out right away. I hadn’t even mentioned anything and she brought that up.

The fundraising will be important since Mylin’s journey with Nationwide won’t end this summer. Mylin will return once a month for the first year. Then every three months for a while, then every six months, and eventually once a year. 

Mylin’s surgery will be on June 30. We do have a few appointments before, and we also wanted to arrive a little early to get Mylin acclimated to the time change as as well as as get to rest a little before the surgery. Wild to think the actual surgery is two weeks from today. It’s all gonna be here before we know it. I thought I was manifesting the heck out of an early summer surgery. Now we’re manifesting the heck out of a super smooth surgery, an earlier than they expect and full recovery!

Thank you everyone for your continued support!🩷