Up until this evening, My had a great day! At one point they even said pain was only at a 4!
The catheter is out and it seems like for good this time! This means they can wear their own Jammies too.
They have been cruising. We have to remind them to slow down and take slow deep breaths for their lungs/oxygen sake. They didn’t even use the walker going around the room and the bathroom. They did bring it when we left the room just for extra support. We didn’t just leave the room today, we got to leave the floor! We went down and browsed the gift shop, and then sat at the big windows and watched the rain. It’s so nice to have My eating again, and getting to eat all together as a family!
A couple steps in the right direction today. Pain button is gone, and we’re on to lighter oral meds. Feeds are now only over night pretty much. Zofran for nausea is only as needed instead of constant.
We replaced the hospital insulin pump with the one we will use at home, the OmniPod 5. An instructor came to teach us about it, sync it with our phones, help us load in the correct numbers, and all that good stuff. This is where the ohhh technology part come in. The class was supposed to be short and sweet. Well we would sync the pump with our phone, get all the insulin into the pump, get the pump applied, deploy the tube (which goes in with a quick needle inside the unit), and the dang thing would fail! We would retry retry and retry again and again, and fail. We applied another one reluctantly, hello expensive piece of equipment and pain in the ass insurance. The educator was horrified. She has been doing this for 10 years and literally never had this happen before. We try a second one. Same thing. Load it up with insulin, it primes itself, it pokes My… and FAIL! My’s on blood thinners so each one is bleeding where we have to hold pressure on it and it’s leaving a blue/purple bruise. The instructor has a monitor too and is like this has never happened but I will leave the room to make sure mine isn’t interfering. I am just so confused. The DISC doctor is with us too and is just as confused saying in his 8 years he has never seen anything like it. Both are calling bosses and the Omnipod customer service. They take the first failed one off the floor to ensure it somehow didn’t unpair, and still fail! We make the hard decision to put another one on. Everyone leaves the room, second Omnipod taken off the floor. We fill it with insulin, it primes, it pokes, IT FAILS!! We’re 3 hours in, we have 6 Omnipods left. We don’t trust them. The educator is tearing up because she feels horrible for Mylin, especially being diabetic herself. She says My is the kindest most relaxed person she had ever worked with and thanks us for being so chill and kind. She calls her manager, and the manager says she is dropping another pack of them off. We wait for it to be delivered. We all feel horrible knowing My is going to get poked again, and we prep the 4th site to attach the Omnipod from the new box. We go through the whole thing again. Instructor leaves the room, all the other omnipods are taken to a site over 100 feet away, we prep, fill with insulin, apply, My gets poked…. And pairing successful! I ran out into the hall and gave two thumbs up to the educator and the DISC doctor both literally jumped up and down and squealed! We were all relieved! It came online right away! So now we’re learning how to adjust and use our own pump with the help of our team, so we’ll be good to go when we head home!
My was so hungry when that was all over, and the kid ordered a smorgasbord! They were all so excited that My was hungry (they weren’t again earlier) that they were like “Go for it!” My’s blood sugars went a bit wild after and we had to give a little more insulin. hey had to get some extra fluids to help as numbers didn’t want to budge. Then their number tanked. They threw up and were shaking, so we had to get some sugar in their system. 15-15-3 rule insulin peeps. So we had two rounds of apple juice, and slowly but surely started to recover, but My has felt sick since. From my support group, I know finding the right insulin balance can be one of toughest parts of recovery post ICU.
It sucks they feel so crummy, because they had been sooo good before that! Even a good part of the day feeling better than pre-surgery!! I still can’t believe how much more color they have to their skin since having the surgery! Like they actually look better already.
The one thing that blows my mind is literally from day 1 of surgery, My has said that none of this pain is pain that they haven’t felt before from pancreatitis! Could you imagine!! As intense as this surgery is, to have this pain be familiar! My has said the whole situation hasn’t been as bad as they had thought.
Since I told you all about the less than desirable nurse I have to tell you about this awesome nurse! Mr. Pickles as the girls call him (he had a pickle scrub cap on the first time we had him). He’s Jon, the bald one, you might remember he wrote that on the board the first night he had us, which was our first night out of the ICU. Those first nights were rough up here. He had been off for a few days, and he stopped in while My was sleeping. He remembered My loved Fugglers, and saw them at the store on his day off. So he bought Mylin one and brought it in!! We all thought that was beyond sweet. He also said if anyone doesn’t treat Mylin right tonight, he wants to know!
The doctors have been really impressed with how far My has come and especially the way these last few days have been. It’s been so nice, because the one doctor from our TPIAT team that I wasn’t sure about back during consultations is so in his element on the floor. He’s funny, kind, and super helpful. It’s been nice to see that side of him. We think he’s serious and kinda intense during consultation to really put weight on the severity of the surgery. Especially since they had told us so many people don’t do a ton of research before coming for consultation.
Currently My’s blood sugars have still been a bit willy nilly. They are, sadly, throwing up and having deep painful hiccups (especially with all that abdominal surgery recovery going on). One thing that’s caused with the resection of the stomach and bowels is delayed gastric emptying. This can cause nausea and even vomiting. My got so hungry earlier that I think they ate too much for what that tummy can handle, so tomorrow our goal is less food more often. This should be much easier on that new tummy.
All in all so thankful for what today looked like, and I know it’s all a learning curve.
