I was nervous when I walked in and My looked very disheveled and sweaty. I asked how they were feeling and they said ok, just hot. I was like yeah, babe, your cheeks are all rosy and your face is sweaty. I got cold cloth and wiped their face. I also brushed and re-braided their wild hair.
I can usually gauge where My is emotionally, physically, or both with their reaction to me being goofy. It’s a great tool, and luckily I am pretty damn goofy. As I started to joke around, I pulled a smile. I got my to go all in on a back and forth banter where they lightly roasted me. I got big genuine smiles, and I felt lighter. They felt lighter. I could tell. Their whole demeanor changed. I kept telling Daniel to watch them laugh at me. My also was enjoying joking around and grossing out their sisters with drain findings. lol
They said their pain sat between a 6-8 throughout the day, and mostly a 6 or 7 (sixxxxx sevennnn for all you kids, even though I know that’s cringe now). That’s soooo much better than the 9 pain level My was at for over 24 hours.
A couple of the pain pumps and their lines were removed today. My was given a scopolamine patch for the nausea. The G/J drain came off. The urology team did have put the catheter in again, and it will stay in for at least 48 hours.
My was very very agitated by their day nurse (and have been). The nurse already had to get talked to for not logging medications for a shift and I not wanting to help get Mylin out of bed. She also leaves trash everywhere, including in the bed! The physical therapist could not believe she found about 10 caps in the bed when she got Mylin up! She was like this is a hazard! Especially when you have someone who is mostly bed bound. There are also caps, wrappers, gauze, towels, and other all over the floor. She didn’t drain My’s urine catch nor the drain tube from the stomach. When My got up for PT, My asked the nurse if she could drain them because they were full. She said she would. Hours later they were full still and My was uncomfortable, we again had to ask her. She left and said she would do it soon. She didn’t do it until night team came in to do shift changes. She also leaves the cap on the feed bag open every time she fills it. She then leaves the bottle from the feed in the bed and other garbage in the bed with Mylin. She is really clumsy and has bumped into Mylin hurting them, dropped something on Mylin’s head, sprayed Mylin in the face with medicine, and several times sprayed medicine on Mylin’s bedding. She also never changes My. Daniel went to complain while we were waiting an hour and a half for a soup broth that My was finally hungry for and found her just sitting chatting at the main desk. She also leaves alarms going forever like 30 minutes or more even knowing that they overwhelm My. My will even call her and she’ll say yeah she’ll do it soon. Needless to say My no longer wanted it when we got it. We’ll definitely be bringing this up to someone!
The physical therapist was in today. She is awesome. One of the things the doctors keep pushing is that they want Mylin out of bed more, but with the nurse above do we think that’s happening? (We’ve asked several times and there’s always an excuse.) The PT showed Daniel and I how to unhook everything, and what to bring with for the two of us to do it alone, if we are both here, and not rely on a staff member. She also brought a walker so we wouldn’t need a 3rd person to ensure My doesn’t fall over. (In the past a successful PT session has needed 3-4 people) My did great with PT today! They made it down the hall twice! The first time, My needed a break after getting out of the room. (We switched rooms last night due to a pipe situation that flooded 4 rooms, including My’s, and made it all smell like sewage. Bonus though our new room is bigger.). Since the new room is bigger, it took a bit out of My just getting out there. When My was ready to get up the PT asked the day nurse for help, and she said she’d be right there. She was not right there. You could hear her chat’n up her friend from around the corner. The physical therapist said, “You know we can hear you, and I asked you for some help!” So frustrating. P.S. this is the same nurse that left Mylin alone in the dark with all the alarms going off and no call button.
While I was out, Daniel decided to get our freshly taught PT put to use, and get My out on the floor again. He asked the nurse for help, and she said she couldn’t. (My always complains how the woman never does anything for herself and always radios someone else to come do it.). Daniel explained how important the doctors said this was and that he needed help. She radioed the girl that just does vitals to come and do it. Daniel said it was awkward and she was nervous, but they made it down the hall and back.
Our diabetes team had us switch the CGM (continuous glucose monitor) to our own today. That’s been interesting to say the least. The first one bled like crazy, and didn’t work. The second one worked the first time it checked and now only is reading 40. We have been finger poking so we know My is sitting between a 90-100. Who knows what’s up with that. DISC (the diabetes team) is aware and trying to trouble shoot.
The DISC team wants to get all of that in order, because Friday Daniel and I have the diabetes pump class. After that Mylin’s diabetes pump we bought through insurance will be applied, and Daniel and I will be in charge of sugar checks and insulin. We’ll still have the doctors and nurses to help. This just insures we know what’s up with all the insulin goodies and tests and what to do before we are on our own.
Daniel and I also had our G-J Tube class today. I think we both found it less intimidating than we were thinking. We still are hoping that My is off feeds when we go home. However, we will likely go home with the tube even without feeds, because they leave it in for a certain amount of time to ensure the stomach and intestines heal in their new spots. Then it will likely be removed in SD (San Diego).
My’s eyes have finally started focusing. They were able to play on their iPad for a little bit. Child life resources brought up a couple canvases and a paint set, and My got to paint too. They thought the paint was crumby (lol picky artist), but art is food this kids soul!
My was pretty nauseous and grumpy at the end of the night. Part of me wonders if that’s because they really exerted more energy today between our jokes, the two walks, painting and even playing on their iPad a bit. I know they were up till 3 am getting the catheter put back in followed by new a towel bath, new gown and bedding; so I am hoping they get good rest tonight.