Endo Asendo

My was in a decent amount of pain, especially in the belly, after I posted the blog last night. So, we pulled out all of our little tricks. We vented the tube. I gave them Tylenol and one other “as-needed” medication (that I couldn’t remember the long crazy name of if I tried). I also started trying to get My to adjust to West Coast time, so we stayed up nice and late. Eventually they fell asleep, and we both slept the best we had in awhile. I had also given them a bolus just before bed, and although that hadn’t done anything the two nights prior, last night sugars stayed much more in order. In order blood sugars= a way more chill middle of the night.

My slept in late this morning. I woke them just in time to get ready for our 1:30pm endocrinology appointment. The Omnipod had beeped signaling its time was donezo earlier in the morning. I knew the device had a good few hours leeway, so I waited till it was time that My HAD to get up to change it. When I deactivated and took off the old pod, there was a puffy bruise the exact shape of the hole the injector comes out of. My had said this Omnipod had been more painful than usual, and we had noticed it didn’t seem to be controlling blood sugars as well. Gahhh these devices are great and irritating simultaneously. Once I applied the new pod, they got dressed and this time, we had everything we needed for breakfast. After breakfast we could tell, our last few days of chasing highs was definitely due to the previous Omnipod. Even with our simple (well honestly not that simple and with lots of Google and calculator and notes involved) guesstimates with carbs as we had done their previous meals these past few days, this time their blood sugars were controlled! Praise-a-llelujah. (I was beginning to have a bit of a complex that Daniel might be a wayyy better blood sugar handler than me. After all the team was singing his praises as the best diabetes dad ever before he left. I mean he is a dang good one.)

We got to My’s endocrinology appointment 15 minutes early, as requested. They didn’t show up till an hour and 15 minutes after our scheduled time. Then the appointment was a little stretched out between the nurse and a pause for the dr to come in. The Endo team has real time access to all of Mylin’s blood sugar information, so the doctor had come in ready to talk about possibly changing up our carb ratio due to the last few days highs that just didn’t want to come down. After I told her what I had noticed once I did the pump change, she said she had also noticed numbers had been so much better since this morning. She said we would stay on the current carb ratio, watch numbers, and see if we need to re-access. Then she said while she knew they were talking about letting us go home this week, maybe by Saturday, that perhaps we could stay behind another week and she could watch blood sugars for a little while longer. She said we could extend vacation. (Mylin and I were both like vacation?!!! As soon as we got in the car lol.) I quickly responded oh no, those flights are booked, we’re out of here! My wants to be home for the first day of school, so I am getting them home. We can do that appointment on zoom. She was like oh yeah we can follow up with you at home since we still have access to the blood sugars. Then we got all kinds of paperwork to help us get through TSA with my suitcase of medical equipment and medications (literally). We also got paperwork and signed release forms for them to communicate with the school to make sure My’s new diabetic status and all that goes with it is well underway by Thursday’s first day of school.

After the appointment (we got out at like 3:40pm) Mylin was really starving, but we were also down to just a couple Creon (the digestive enzymes My needs to be able to turn food into energy. Without them they are horribly ill and failure to thrive). After waiting in the CVS line, we find out our insurance denied our prescription. A prescription literally needed for Mylin to live. If I wanted to pay out of pocket, the total was OVER $6,000. Yes, six thousand dollars. That was a be back soon situation. Daniel hopped on the phone, while I ran back to the Ronald McDonald House to scrounge through my medical goods suitcase in hopes of finding enough Creon to get us by. (Daniel did get the problem fixed. Somehow the prescription was put through under my birthday, so it got denied. On our way back we stopped at CVS again and grabbed it. Can you believe this bag is over $6,000 of medicine?!)

After CVS, My couldn’t stand to wait to eat anymore and wanted more than a snack. We hit up a drive thru. We also had reservations for this place that has an amazing (50% off apps and drinks) happy hour. It’s the prettiest place I have been here, rooftop, city views, fresh breeze, vintage meets modern boho, and house music. I enjoyed sitting in the cool breeze for a bit. My was over it pretty quickly and we headed home. Their back was still bothering them a bit. (But their blood sugar was controlled woot woot). We headed back and they have been resting since

Oh yeah, and I kind of breezed over it, but FLIGHTS ARE BOOKED FOR GOING HOME!!!! I talked to Christie this morning, and I had slightly misunderstood. They were hoping that I would be able to finish out the rest of this weeks appointments and then head home. She said if I absolutely couldn’t find tickets to make that work to just let the team know. This team has been so amazing. If they need us here till Wednesday, we’ll be here till Wednesday. She did say that the GI doctor who saw My last week said she believed My was ready to go. I also messaged and called our doctors office (I like to hit from all angles to ensure I get in touch.) and did get My an appointment to get the GJ-tube taken out back in SD. This means we’ve got everything lined up to be out of here Wednesday afternoon. We have an appointment with our actual GI doctor to wrap everything up here (until we are back next month, of course) and I plan to leave for the airport right from that appointment. We are both so exited! Daniel was saying it’s crazy how the minute we heard My was ready to go home, we all had this “get us the heck out of here” feeling. Like we held it together till we knew we didn’t need to anymore. We are all ready to be in our own beds. I am sooooo beyond thankful that not only did I get that “early summer surgery” I was manifesting and praying for to ensure My would miss as little school as possible, but it seems like they aren’t going to be missing any for the surgery at all!!! We will miss about a week each time we need to return, but to get to start with the rest of their school wasn’t even something we thought we could wish. Since we were warned My’s recovery would be the longest end of the recovery estimates, if not over, we had already warned the school we may not be back till September. Ahh! This just so good! In a few days you’ll see first day of school pics, and I know some you will have tears in your eyes right along with me!💙

Mylin Schaaff

Lemon Grove, CA

Transplant Type: Islet Cell

Transplant Status: Transplanted

Goal: $100,000.00

Raised: $47,540 of $100,000 goal

Raised by 144 contributors

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