As I said earlier Mylin’s pain was pretty amplified since last night. Especially this morning. More pain meds came on board, and the staff got My more comfortable. The pain meds have them really chatty. I can’t even count the amount of times I sat down only to hear “Mama” and they would start telling me something, so I would have to get up and walk over to the bed to hear them. I don’t know why it took me till dinner time to figure out I needed to just pull the recliner over real close to the bedside and chill there.
If you know me at all I am a big jokester and I LOVE to give my kids a hard time. I’ve even kept a lighter banter going the last few days, just to keep My engaged. Well the pain meds have them on their toes with me and it has been HILARIOUS. This morning 2 different times nurses were rearranging cords on the bed bent down, and My said “Mama..” and I was like “yeah?” Then they turned in the opposite direction of where I was, toward the nurses, and said “stop it what the heck are you doing down there? You’re going to get kicked out.” The soft voice and closed eyes and with a sleeping mask makes it all even funnier. The nurses would stand up and My would be embarrassed and apologize 100 times. Later a new nurse came in for our nurse to go on lunch break and she was doing IV blood draws and rearranging lines. As she did this, she said “Hi. I’m Meagan. I’m just going to to be doing a few things with your IV.” My reached out and tapped her hands 3 times and said “No, no, Meagan. You’re fired.” Then lifted their sleep mask to see the nurse and again apologized 100 times. They said “I thought you were my Mom messing with me. She likes to pretend she’s a nurse when I am sick at home and I thought that’s what was happening. I am so so sorry. I’m sorry.” It was hilarious. Mylin’s pain psychologist was in the room at the time and we could not stop laughing. She repeated what My said two times while she was in just laughing out loud about it. A few hours later at shift change, My was resting again. A really young guy with glasses and a Bluey shirt came in and was reading off My’s meds, how much had been used, and how much was left. My turned towards him and said “what are you a nerd or something?!” Then they lifted their mask and again apologized like 1000 times this time. They said they were having a dream that they were at a video game party and a guy walked up and was talking to them about insulin and other meds and so they were like what the heck?! We all burst out, in probably too loud of laughter for the ICU, but it was like belly hurt funny. My is first of all a self proclaimed nerd, and most of all so empathetic and would never ever under normal circumstances say something like that to someone. We laughed about that for hours later, and I know it will be a lasting joke in our family for years to come.
It hasn’t all been so silly though. My is having a really hard time with oxygen. Even with a nasal cannula they are having a hard time to keeping it stable. They upped the dose of oxygen 3 times today. The team is currently, as I type, ordering a mask for more oxygen. The beeps of the machines are unsettling to say the least as the oxygen has continued to drop. The nurse said this is totally a normal part of the process. They said that at first the TPIAT patients need so much fluids, and then their body catches up and they don’t need as much. That’s when the oxygen issues happen and they have to taper meds for fluids and find the right oxygen dose while they wait for it to all level out. It doesn’t help that My is back to not out putting enough urine and that’s causing fluid build up. More meds are coming for that soon too. Like I said before this is an emotional roller coaster,
Their abdomen has felt really tight too. They have complained about that a fair amount.
The nurses continue to be blown away by My’s strength and tenacity. They had to change the neck port’s dressing today and My was still as a statue. Both nurses said My was the legit most easy patient they had ever done it on, just completely chill.
The room is currently a buzz with the attempts to fix the oxygen situation that seems to have gotten quite a bit worse tonight.
Now they are bringing in X-days and ordering more things. I am typing trying to stay a little distracted while things are a bit crazy in here.
Please pray, send good vibes, and wish My’s body gets the oxygen and fluid retention situation under control, that they have little pain, and that they are actually able to rest tonight.
Thank you so much.
** update My is “overloaded with fluid” and there is a LOT of fluid on the lungs. Mask is getting them stable and higher dose of meds is being given.
*** another update: *** woke up to lots of beeping. Changed to another mask with more oxygen still dropping. Ordered a high flow metal nasal cannula and doing even more oxygen. More meds on the way
