When we are going through our trying days here at the hospital, I feel like we live moment by moment. One moment we feel like we are getting no where, and then other times we feel like we just overcame another obstacle. However, I never want to completely celebrate because I know how things go around here. When I sit here tonight, recalling our overall day, I can see progress.
Let me first go back to last night......
At 11:00 last night, they informed us that they were moving us. I was in my "bed" pretending to sleep while I secretly watch her monitor. Yep, that's how I roll. I was like, "are you kidding me?" Macy had just gotten comfortable after the scary allergic reaction and she seemed to be finally calming down. So I had to load our bags and belongings (which have increased over our stay) onto a cart and wheel it next to Macy's hospital bed through the halls of the hospital. On the trip there Macy got hot. When we removed the blanket covering her legs we noticed more of the rash. I also noticed that her heart rate had climbed into the 90s. All of it was a bit concerning to me considering she had been fine before the rash started.
Anyway, they moved us from the ICU (floor 16) to the liver floor (floor 20). Our room is pretty nice. It has lots of cabinet space, a great view of Lake Michigan, and a full bathroom with a REAL shower. Yep, not just one of those showers that have a curtain to separate it from the toilet. Woohoo! So Macy and I quickly adjusted, met our new nurse, and tried to get some sleep. The strange thing is, Macy slept with the oxygen, and as the night went on, she kinda started to breath funny, and we had to end up turning her up from 1 liter to 2 liters. Again, she was completely fine before the allergic reaction. So who knows. We ended up turning it right back down after she woke up and she was fine.
So today.....
When the doctors rounded I explained all about the allergic reaction last night, and everyone has decided no more Miralax. We have no idea if that is what truly caused it, but that is the only thing that could make any sense. Anyway, I also told them about her breathing and her heart rate that remained in the 90s all night long. They decided to do a chest x-ray first and take a look at her lungs. She still appears to be sort of wet in there, so we decided to start back up respiratory therapy. They started her on a neb treatment, and some other therapy that requires her to blow into a acapella blower. They will continue with these treatments every 4-6 hours. Macy thought it helped. They also decided to run some blood and urine cultures on her because her white blood count increased. It has been very stable, but her labs this morning showed the increase.
I looked at the clock at 1:00 p.m. and thought, "What progress have we even made today?". It didn't feel like we made much due to dealing with all of the labs, cultures, doctors, and chest x-ray. Looking at our day as a whole we sure did accomplish some stuff though. Macy went on 3 short walks. She ate 3 good meals. She stopped taking the oxy pain medication, and we are just sticking to Tylenol. She took a couple good breaks off of the oxygen. So yay for those accomplishments! Go Macy!
Also, today I noticed that her wound bag was leaking a little bit. They ordered up a new one, and called the surgery team. When they came by and removed the old one, we noticed that it was barely leaking compared to 2 days ago. So they decided to just put a thick pad on it and wrap it with a body wrap. She has some leakage from it, but it's been over 3 hours. If we can get by with only changing the pad every 3 hours, we would much rather do that than have that bag attached to the front of her abdomen. Also, it should continue to be less and less drainage as time goes on. We can't leave with that bag attached to us, but I'm pretty sure that we can leave with a dressing that needs changed every once and a while.
After the good day of eating, it looks like they will be turning off the TPN in the morning. Macy is so excited for that! It means that she will not be hooked to an IV pole anymore, and the dang machines won't beep constantly waking us up all night long or during her rests. So, one of the only things keeping her here is her trouble breathing and getting off of the oxygen. It's very frustrating. She seems to tire very quickly, and she gets short of breath quickly also. When I give her breaks, she asks to have it back on because she feels more comfortable with it on. It's crazy what a struggle all of this has been for her from a respiratory standpoint, and I understand that it takes some time to recover. It's so hard though. I want to see her recover faster. It's hard to see her scared to breathe on her own.
Just to give you all an idea about how much fluid this chick had on her........
When we arrived at the hospital, Macy weighed 64 lbs. Following all of the ICU craziness with the bolus amounts of water and the blood transfusions, we finally were able to weigh her, first on her bed, and then on a scale. At her highest, she weighed 80 lbs. Yep folks, she was carrying 16 extra pounds of fluid. It's absolutely crazy to think about! Well today, she was back down to 64 lbs!
We are praying for an uneventful night. Or actually maybe an eventful night full of sleep, good breathing, less drainage from her wound, overall healing, and staff leaving Macy alone! So yes, pray for an eventful night full of those things for us! AND pray that we can go home soon!!!!
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