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<\/figure>\n\n\n\nI know for some of you this may seem pretty personal information, but for me, I keep in mind that I already know that there are TPIAT perspective patients reading my blog. My goal for them is to know as much information as possible to know what to expect, what\u2019s normal, and how to keep themselves healthy.<\/p>\n\n\n\n
Nationwide Children\u2019s Hospital is so on it. They called me the very next day. They wanted to ensure that Mylin was OK. They said they were aware Mylin was in the emergency room and had spoken with the doctors there already. I was asked if I felt like I had a full understanding of how we ended up there and why Mylin was in pain. I told her that Mylin had dealt with constipation pretty much their whole life with the exception of when they were in a pancreatic flareup ans when they no longer had digestive enzymes. Then after surgery, they were able to go, so in their mind they thought I\u2019m not constipated anymore. I had explained again and again to My that normal people go way more than you would expect and that they should continue to take the MiraLAX and Senna as prescribed by the doctor. However, the kid is a teenager. Ya know\u2026 there\u2019s that whole teenagers don\u2019t like to listen to their parents thing lol. (No shade on teenagers we all know we were the same way. Be so for real.) The doctor from Nationwide Children\u2019s Hospital told me that this is actually, one of the number one reasons that kiddos end up back in the ER after the TPIAT surgery. It\u2019s super common. Between the stomach and intestinal resection, causing delayed gastric emptying and all of the medication the kiddos are on, it can lead to an internal buildup. Another one of those just parr for the course situations.
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We are still questioning if we have reached a full clean out, or if things are just working their way around the blockage. My has had several more days of pain and abdominal bloating. We upped the MiraLAX intake and are keeping an eye on how Mylin has been feeling. We definitely won\u2019t hesitate to take them in if we feel like that\u2019s something that isn\u2019t happening.They have been better the last two days though. <\/p>\n\n\n\n
The thing that hasn\u2019t been better the last three or four days is their blood sugar! It is everywhere! We are so intense almost OCD with weighing everything, and knowing pretty damn near the exact carbs that Mylin is intaking. We spend so much time weighing and labeling even a bag of grapes or sliced peaches with the exact carbs. Therefore, when things are normal with My\u2019s body, we have a good handle on their blood sugars. However, this week has been nuts. Mylin\u2018s blood sugars have swung high out of nowhere throughout the day and night. They have reached the absolute highest they have ever been in their life. They have also swung dangerously low. Yesterday alone, we had, out of nowhere, a dangerously low blood sugar just a half hour before bed. At first, we thought it was possibly a wrong reading, because at one point, the blood sugar dropped over 30 points in five minutes. However, when we did the finger prick, the Dexcom reading matched that reading. This meant we had to give them fast acting carbs. Daniel has learned, from being around them more with the dangerous lows and I have, that Mylin does better with a smaller than recommended dose of carbs. Otherwise, they swing abnormally high later. The recommended dose during those times would be 15 g of carbs every 15 minutes for three times before you\u2019re calling a doctor. We started with eight carbs and then the blood sugar kept going down\u2026and fast, so we added seven carbs. By the 15 minute mark, they were climbing back up to normal. Phew! The lows make me so nervous! (especially because Mylin was pre-diabetic before surgery they actually had a low blood sugar seizure before we knew what those were. We had to call 911 and we couldn\u2019t get My to stay conscious. We found out about their blood sugar when the paramedics got there. Mylin hadn\u2019t had their Dexcom come on because they had had oral surgery that morning, and we were mostly using it for the swings that they were having which weren\u2019t all the time yet. So I have a little bit of medical trauma with that one.)<\/p>\n\n\n\n Once we got their blood sugar back up to normal we got about two hours of sleep before our alarms started going off for high blood sugar. Everything with insulin has to do with timing. We still had an hour before we could give a bolus of insulin for blood sugar correction. So for an hour we laid in bed awake and stressed as the alarms continued to go off every 15 minutes and that number continued to go up. We gave the correction as soon as that one hour was up. We made sure that we finger pricked to double check that the Dexcom was reading correctly. It took a long time for that blood sugar to come down, and even then, it never went into normal range. Shortly after the bolus it went right back to skyrocketing. Up and up and up it went. Alarms after alarms. I don\u2019t think we could give another correction until about 4 AM. Mylin hadn\u2019t eaten anything since dinner, so we had no idea why we were still riding this high after a correction. Mylin\u2019s blood sugar didn\u2019t even hit the high side of normal until around 5 AM. No sleep for any of us. Not to mention that with those islet cells that were transplanted are supposed to be babied, so we are to keep Mylin\u2019s blood sugar under 140 as often as possible. Yikes!<\/p>\n\n\n\n As I have said before, Nationwide Children\u2019s Hospital is on their shit! The diabetes team\/the DISCC team always monitors Mylin\u2018s blood sugar from afar. Daniel got two calls this morning and afternoon from them. They had seen the blood sugar mess yesterday and wanted to discuss. Daniel and I track everything like crazy, so it\u2019s pretty easy to know that it wasn\u2019t caused by food or if it was how that could\u2019ve happened. They were pretty stumped on exactly what was going on with Mylin. The second phone call came from someone higher up with the team. They wanted to speak with Daniel themselves to get a better understanding and see if they could come up with anything else. They ended up pretty stumped too. Mylin did eat more carb heavy items than usual yesterday, but we also perfectly bolused for them. That being said, even when you bolus for the right amount of carbs, some foods and drink drinks just hit the body in a different way. It was just pretty wild that it had been over four hours since they had eaten anything and that blood sugar was just skyrocketing up. They weren\u2019t in any pain. The doctor did say this can happen when the diabetic patient is on their period, starting to get sick, of course also in pain. They are just going to have us keep an eye on things. They did also have us adjust our correction factor, giving Mylin more insulin when we enter correction boluses. It\u2019s all wild because you can know all of your stuff and do all of the right things and those blood sugars can still go crazy one way or the other. It\u2019s a constant brain bender.<\/p>\n\n\n\n Next week, Mylin and I travel back to Ohio for a follow up and a week of appointments. You can definitely expect updates from me more often then. Mylin\u2019s number one question they wanna ask is if they can have carbonated drinks yet lol. I have a list of my own questions. We are both very interested to see how everything goes. Thanks again for continuing to follow along. Here\u2019s hoping we all get some rest tonight.<\/p>\n","protected":false},"excerpt":{"rendered":" My\u2019s had a bumpy week and a half- two weeks. Just a week ago today, they were back in the ER. They had 4 days of a mix of missed school, sleeping a ton again, and severe pain with nausea. To top that off, with pain and diabetes, comes high blood sugars. Which meant we […]<\/p>\n","protected":false},"author":2565,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-292","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\n![\"\"](\"https:\/\/cota.org\/cotaformylinscrankypanky\/wp-content\/uploads\/sites\/6770\/2026\/09\/IMG_8462-500x1024.jpeg\")
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