{"id":136,"date":"2026-07-17T02:58:04","date_gmt":"2026-07-17T02:58:04","guid":{"rendered":"https:\/\/cota.org\/cotaformylinscrankypanky\/?p=136"},"modified":"2026-07-17T02:58:06","modified_gmt":"2026-07-17T02:58:06","slug":"goodnight-shoulders-tight","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaformylinscrankypanky\/2026\/07\/17\/goodnight-shoulders-tight\/","title":{"rendered":"Goodnight, Shoulders Tight"},"content":{"rendered":"\n

7\/16\/26<\/p>\n\n\n\n

My had a much better night last night. There were all kinds of basal rate changes during the day to prepare us for the night, and they seemed to have worked. (Last night at least.) I think we actually both got to sleep through one full 3 hour stretch between finger pricks. There was still several meds or vital check between the other 3 hour stretches. It for sure was not interrupted sleep, but it was the most we have both had in several days. By 7am though, this room is hoping. I had high hopes of passing back out, but o was quickly reminded mornings are busy here.<\/p>\n\n\n\n

Today seemed extra busy. Lots of different doctor, nurse, and therapist visits. They are preparing to discharge us to the Ronald McDonald House on Monday, so there\u2019s lots to go over and prepare for before then. My had done better with less medications yesterday, and was thriving with all the challenges they were given. <\/p>\n\n\n\n

One of the things we\u2019re still working on is getting more calories in by mouth in hopes that we won\u2019t have to leave still on J-tube feeds (since My\u2019s stomach was resected, they were giving it extra time to heal and wanted to avoid nausea, so we\u2019re putting the feeds in past the stomach into the small intestine). Right now My is getting about 40% of calories by mouth and 60% by tube. The nutritionist ordered some of the high calorie boost shakes that Mylin had been taking pre-surgery. We were hoping we could make up some of the calories with those. The doctors said if we could make full count calories by mouth for two days, we could talk about going off feeds. (Feeds over night are part of what causes the high blood sugars.) If My makes it off of feeds we can have the pump go on auto mode and we won\u2019t have to be doing as much as we are right now.<\/p>\n\n\n\n

My woke up with some nausea right away, but pain was controlled. It was good to see them so good pain wise. They ate a decent amount during the day and got two boost weight gain shakes in. We were on a roll (were). They were doing so well I left the hospital for the first time since Monday. The Twinnies stayed with My while I ran to do some laundry for My (they had a g-tube leak all over their stuffies and pjs) and a load of towels for the twins, take a shower, order some dinner for the 4 of us, pick it up, and run to CVS to pick up the crap ton of medications we need for discharge. Of course, CVS couldn\u2019t be easy. In the list of about 4-5 things that were denied was our insulin pump. We put the last one on today (you might remember we had gotten an entire batch that didn\u2019t end up working), and as the DISC team reminded me that we will need to put another new pump on over the weekend. Therefore, I needed to try my hardest to get them before one was done for the weekend. It took two emails, and asked to speak to someone else 3 times at CVS. We got a few more pumps though, thank goodness. I also spent a good amount of time on the phone with OmniPod (Our 2nd call, our DISC team had already called, and our pump educator called twice already also.) they were supposed to replace the pumps and have them overnighted to the Ronald McDonald house. After a while on the phone, the representative told me they were not overnighted and they were also sent to our house and would arrive tomorrow. Which I had to tell him none of us were currently living at our house and we were 2\/3 the way across the country from it. Allegedly this is going to be fixed, but it\u2019s also not the first second or third time we\u2019ve been told that. Super frustrating and also not something I wanted to spend my time on.<\/p>\n\n\n\n

When I got back, we ate, My ordered dinner for themself (the a\u00e7a\u00ed bowls were too high in sugar for the highs we were chasing even after a correction bolus of insulin) and did Mylin\u2019s daily walk. At the end of the first half of the walk, they jokingly laid down sprawling out over one of the wood benches. I saw it in their face the moment they did it. Intense pain and intense regret. They lay there for a few minutes in pain, and I had to help them up. They were in so much pain we had to stop a few times along the way. My stomach felt sick and my shoulders reached for my ears. They came back in to their room in a totally different energy than we left it. We had been chasing high blood sugar when we left for the walk, but now it was rising quicker back into the 200s. Once in the room for a bit, My started crying from the pain. My hasn\u2019t cried since the first or second day of surgery, and through the process of pancreatitis they have only cried a few time. That was hard to see.They asked if I could massage their back to try to take some of the intense pain away. Then a bit later after nurses left I hear a quiet \u201cMama, can you come sit close, so that I know you\u2019re here.\u201d I pulled the stool up, and they had me hold their hand. This kid doesn\u2019t like physical touch AT ALL, so that\u2019s how you know it\u2019s bad. The pit in my stomach grew larger and my shoulders painfully hard (when anxiety gets me my neck likes to disappear. Like I needed them worse, between all the overtime I did before l left and sleeping on these hospital room beds.) Shortly after they started complaining about feeling like they couldn\u2019t breathe. They ended up putting My on a small dose of Oxygen. The pain continued and they ended up giving My one of the higher level of pain meds we haven\u2019t used in days. It sucks to see them so rough, after being so good. As a mama, you of course, also feel like man I should have stopped them from hopping on that bench. I am really hoping they didn\u2019t do anything internally, and they\u2019ll be better in the morning. For now I am watching my baby like a hawk. Pain meds are starting to help get them more comfortable, so that helps me relax a little. They weren\u2019t able to touch a bite of their dinner after that. Which means we have not made calorie intake, took a medicine we were trying to week off of, and went on oxygen for a bit. Gahhh. The team did order a chest X-ray out of abundance of caution. I haven\u2019t heard back about results, but I would assume it\u2019s fine. I think that was all just coming from the immense amount of pain My was in.<\/p>\n\n\n\n

It\u2019s always hard to have a moment that feels like a backslide or a hiccup, but to have it come on suddenly was both sad and scary. <\/p>\n\n\n\n

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7\/16\/26 My had a much better night last night. There were all kinds of basal rate changes during the day to prepare us for the night, and they seemed to have worked. (Last night at least.) I think we actually both got to sleep through one full 3 hour stretch between finger pricks. There was […]<\/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-136","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\nGoodnight, Shoulders Tight - COTA for Mylin's Cranky Panky<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaformylinscrankypanky\/2026\/07\/17\/goodnight-shoulders-tight\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Goodnight, Shoulders Tight\" \/>\n<meta property=\"og:description\" content=\"7\/16\/26 My had a much better night last night. 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