My’s 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 also had several nights of alarms going off all night long. I had reached out to Nationwide Children’s Hospital asking for advice and just letting them know what was going on. I was told they didn’t think the issue would relate back to surgery, but given that they were in so much pain they should probably be seen in the emergency room.

The emergency room here is a mess. We truly try to not go as much as possible, for better or worse. Honestly, most of the time they just tell you that you should’ve seen your primary care physician, and wanna get you back out the door. We waited at home one more day, but we were woken up way before the sun by a phone call from Mylin!

They were on the verge of tears. They said they had been up all night in severe pain and were severely nauseous. They also said that it felt like all of their muscles were spasming. They needed to go to the bathroom, but didn’t think they could get up on their own to make it there. When we got into their room, they were in so much pain that their body was completely trembling… intensely! It reminded me a lot of being in hard-core labor without medication. That’s how bad the trembling was. I knew right away. It was time to go in.

We ended up being at the ER for (I can’t remember if it was) 9 or 11 hours. Luckily, given that Mylin’s surgery was considered a transplant surgery that gets us into a room pretty quickly. We always have to explain what the surgery is, because it’s so rare most physicians have never heard of the surgery, let alone know what it entails. There’s a hotline that we give to the doctors at the emergency room, or anywhere Mylin is seen, to coordinate their care with the doctors at Nationwide back in Ohio. One of the first things they order is always a CT scan/visuals. With the TPIAT surgery, there is such a high rate of both intestinal blockage (That in some cases can be so severe it needs surgery.) and abdominal adhesions (Which would require surgery.) Through the CT scan, we found that Mylin had a large hardened mass of waste, if you will, stuck in the intestines against the colon wall. (Hence the pain and the nausea. Not to mention all of that pressure pushing on those recently surger-ized areas.) They said they didn’t think it required surgery, but we would need to hit it with medications at both ends. We did the enema in the hospital and were told to follow up with the bowel clean out protocol at home. (Many of us with kiddos that have chronic pancreatitis are very familiar with this protocol, since pancreatitis likes to swing one of two ways: you either can’t stop going because your pancreas isn’t making digestive enzymes so it isn’t breaking down your food and it goes right through you, or you can’t go at all.)

I 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’s normal, and how to keep themselves healthy.

Nationwide Children’s 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’m 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… there’s that whole teenagers don’t 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’s 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’s 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.

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’t hesitate to take them in if we feel like that’s something that isn’t happening.They have been better the last two days though.

The thing that hasn’t 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’s body, we have a good handle on their blood sugars. However, this week has been nuts. Mylin‘s 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’re calling a doctor. We started with eight carbs and then the blood sugar kept going down…and 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’t get My to stay conscious. We found out about their blood sugar when the paramedics got there. Mylin hadn’t 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’t all the time yet. So I have a little bit of medical trauma with that one.)

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’t think we could give another correction until about 4 AM. Mylin hadn’t eaten anything since dinner, so we had no idea why we were still riding this high after a correction. Mylin’s blood sugar didn’t 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’s blood sugar under 140 as often as possible. Yikes!

As I have said before, Nationwide Children’s Hospital is on their shit! The diabetes team/the DISCC team always monitors Mylin‘s 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’s pretty easy to know that it wasn’t caused by food or if it was how that could’ve 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’t 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’s 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’s a constant brain bender.

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’s 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’s hoping we all get some rest tonight.