{"id":276,"date":"2026-08-19T15:35:51","date_gmt":"2026-08-19T15:35:51","guid":{"rendered":"https:\/\/cota.org\/cotaformylinscrankypanky\/?p=276"},"modified":"2026-08-19T15:35:53","modified_gmt":"2026-08-19T15:35:53","slug":"tubey-or-not-tubey","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaformylinscrankypanky\/2026\/08\/19\/tubey-or-not-tubey\/","title":{"rendered":"Tubey or not tubey"},"content":{"rendered":"\n

Mylin continues to do really well overall here at home. Last week was the first week of full school days and a full school week. Mylin had continued to refuse the golf cart escort. By Thursday, that had caught up with them. They had to leave school early and were in a lot of pain. They had pain in the stomach and in the back and were feeling a little nauseous too. No matter how long it\u2019s been in between. It always sucks to see them like that again. When Monday came around, they were really nauseous (the worst since being hospitalized), super exhausted, and in quite a bit of pain. Their pain was at about a level eight. They slept almost the entire day away. It was a really triggering for both Daniel and I to see them like that again. A glimpse of what our day-to-day had been before the surgery. Thank God Tuesday brought a new Mylin, and a sigh of relief for us. We were back to being able to enjoy the new life that surgery has given them and in turn all of us.<\/p>\n\n\n\n

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We saw our San Diego doctor yesterday. I was curious to see how that would go, since we hadn\u2019t seen him since February. Well before we even went for a consultation in Ohio. Before I had even come across the TPIAT surgery on my own. For any of you that had missed it before. Our doctor had told us there was nothing we could do for Mylin. He said we could only hope that it would go away, or hope that the organ completely burned out on its own. He said with that, (the burning out of the pancreas) there was no guarantee that the pain and nausea would go away. However, he had said those were our only two options. Imagine my surprise when reading through years worth of posts on my support group I found out he actually worked with the TPIAT team in Ohio. None of that came up, of course.
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He was really happy to see us. Big smile telling My it was good to see them and our Ohio doctors (his friends) had been telling him how well My had been doing. It was pretty confusing. At least it was happy vibes in the room? He was excited that we now knew his friends in Ohio and asked us all kinds of questions about being there. He asked Mylin if they enjoyed Ohio and if they were able to get out and see things. I reminded him that before the surgery when we would go for consultations, Mylin was mostly bedbound and so they weren\u2019t able to do much at all. After we had gone to appointments, they would sleep the rest of the day and be in pain and severely nauseous. At that point, they were also only surviving by drinking weight gain shakes and spent very little time awake. Then, of course, once we were there for the surgery, Mylin was recovering the whole time.<\/p>\n\n\n\n

While we were in at the hospital yesterday, Mylin got their tummy tube taken out. They were so beyond excited to have that thing taken out. The area around the tube had began to grow granulations, started to bleed again, and became extra sensitive, so My was more than ready to say goodbye to it! It hadn\u2019t been used as a method to get food since before they were discharged to the Ronald McDonald house. It was only in there since the resection of the stomach and intestines was still healing. Therefore, they didn\u2019t want to pull it too early and cause collapse or disruption. It was a little painful to get the deflated balloon part of the tube pulled out (When they put the tube in there is a small balloon that sits below the surface of the skin that is inflated using a syringe full of air to hold it into place. Then when they get ready to take it out, they use the syringe to pull the air out and deflate it so that it can be taken out of the stomach.) I saw Mylin wince as that part came through. After that the rest came out really easy. No pain meds or anything needed. Our doctor noticed I was taking pics of everything and held it up for me to get a picture of it. (I will post it at the end of this post.). The wildest thing to me is that the hole from the stomach tube is able to close up within 30 minutes! So wild. At the end of the night Mylin said their pain was already better from having the tube out! The doctor said to keep bandages on it until about bedtime, but we noticed that it had started to heal to their shirt so we put a bandage back on to sleep. We took it off this morning and I\u2019m trying to have them wear loose fitting clothing, so that it can heal without sticking to clothing.<\/p>\n\n\n\n

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We did do some bloodwork while we were at our Children\u2019s Hospital here. In the past, Mylin has always needed an ultrasound machine or for them to pull someone from the anesthesia team to be able to take blood and\/or get an IV line in. Many times they\u2019ve had to be poked over and over to find the right spot, and they\u2019ve had a lot of veins be blown.I think it must be because they are no longer malnourished, but we were able to get the needle in and get blood drawn and we\u2019re in and out in less than two minutes! This to me was another sign of how healthy Mylin is becoming.<\/p>\n\n\n\n

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Our current main hurdle continues to be diabetes. Now that we\u2019re home it\u2019s so much easier to control the highs and lows when Mylin eats. We\u2019ve gotten really good at measuring things and counting carbs. We got Mylin special lunchboxes that have small individual squares and removable labels that we write grams of carbs out on. Since surgery, Mylin\u2019s blood sugar has always skyrocketed at night. Recently it\u2019s been doing all kinds of crazy things. It\u2019ll go up and then it\u2019ll just crash. We have been mindful about what they eat before they go to sleep. Trying to pick something that would help sustain their blood sugar during the night. We get their blood sugar to a perfect place, and then it just goes totally willy-nilly. The night before last night we had their blood sugar at about 109 (and we were hoping we would finally get to sleep )since we haven\u2019t slept through the night since the surgery) and their blood sugar dropped 40 points in less than 15 minutes. The night before it had dropped to the 40s before we were finally able to get it under control using the 15-15 method for a 3rd time (which is nerve-racking because after the third time you called the hospital. that\u2019s fun at 3 AM). Just setting all kinds of alarms off. It\u2019s been many many nights of many alarms. I know I had said this before that our last round of bloodwork before leaving Ohio had suggested that the islet cells from the transplant were beginning to wake up. This could be another indicator of that. I am super curious to see what that bloodwork looks like the next time we\u2019re in Ohio. The islets don\u2019t just come online when they wake up and stay awake. They just shoot random amounts of insulin out, which would give you a big low like that and then can go back to sleep for an unknown amount of time.
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Mylin continues to thrive though. Parents in the group have told us that those bumpy days are par for the course. It doesn\u2019t mean they don\u2019t smack you in the face when it happens, but the fact that the majority of our days are good is so amazing! Mylin has even mentioned they are ready to start driving again! This is huge!
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Mylin\u2018s next doctor\u2019s appointment will be with Nationwide Children\u2019s Hospital in Ohio at the end of next month. Then in November, we will check in with our doctor here again. My continues to knock it out of the ballpark!<\/p>\n\n\n\n

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Mylin continues to do really well overall here at home. Last week was the first week of full school days and a full school week. Mylin had continued to refuse the golf cart escort. By Thursday, that had caught up with them. They had to leave school early and were in a lot of pain. 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