9 days already? Haha, who am I kidding, it feels like it's been 109. So I have left the hospital only 3 times since we got here. Each time I went outside and walked around the block. The first time was Sunday, and then my other walks were yesterday and today. It's a big deal for me to leave, so I am very proud of myself. I am also taking showers, and I am sure the nurses and doctors greatly appreciate that, and it makes me feel a little normal. Macy got some good sleep last night, and she is already asleep for tonight.
We had a good day today. One doctor looked at me yesterday when I started crying during rounds and said, "she'll be a different kid tomorrow". She is! During rounds this morning, they made the decision to give her a try back on the high flow nasal cannula. If she did well, great. If she struggled then we would just look at it as a break, and then slowly give and increase breaks. So at 11:30 a.m. today we took her off the bipap, and switched to the high flow nasal cannula. She has done great on it all day. We are praying this continues! She is still struggling with pain some, but she is learning to press her pain button that administers medication as needed. They have reduced the meds a lot, haven added in some Tylenol to help as well.
She has had a lot of anxiety today, that I think stems from her fear of the pain. Movment has been a big cause of the pain and anxiety. Our physical therapist came by today, did exercises with her, and even helped her sit up on the side of the bed. Macy needed support since her body is so weak from the 5 days of paralytic, and then 4 more of almost no movement in bed.
They have now removed her arterial line, and her ng tube (from nose to stomach). However she was ahead of the game around midnight last night, and pulled it out herself, lol. They of course placed it back in only to have Dr. Superina tell them to take it out tonight. She also had 1 IV go bad yesterday, so it was removed as well. So we are down to 2 IVs, a central line, and oxygen.
So my big question tonight was, what do we need to do inn order to get out of the ICU? She need to get her central line out, which can't go until we stop our TPN. She can't stop TPN until she is eating, and she can't eat until her bowels wake up and she poops. Which they said is one of the hardest things to accomplish after big surgeries like Macy's. Well folks, she pooped! Bring on the food!
We also have to wean the high flow oxygen to an regular nasal cannula. You can get on a regular one when you are down to 3 liters. Macy is on 10 liters right now. So I have no way to tell when our move will happen, but I pray it's soon.
Also, starting tomorrow we will transition Macy from her IV anticoagulation medication Heparin, to an oral one. This is a med that can be very tricky to get the right dose,many might change often. Unfortunately it requires a lot of lab work. At first it will be daily, and then once we think we have the right dose, we still have to check it weekly.....for 6 months. It totally sucks for Macy!!!!
I know I say this often, but she is amazing! All of the doctors and nurses know it as well, and are so impressed with her. Dr. Superina came in tonight, looked at her and said "you're pretty amazing aren't you?!?!" Yes she is!
Oh and just to make the day even more special, Grandma Kelli went out shopping today, and bought Macy a whole bag of cute hair bows. I did her hair up in a cute bun, and out one of the bows in it. Those little things are helping her feel a little normal.
Also, we are so excited to have a family here with us for our Abernethy support group. I am not happy, that we are all here in the ICU, but our kids are getting a cure we didn't know was possible,and we are here to support each other. There cute little guy had his 1st surgery yesterday, so I know how difficult the road ahead is, please pray for them. A doctor got tickled when she saw us together since Abernethy Malformation is so rare, and here two families stood together chatting, with our kiddos only rooms apart. Then Doctor peeked her head in and said, "look, it's an Abernethy convention!" It was too funny!
Anyway, please pray for a great night for Macy, full of rest and healing! Tomorrow she will finally be reunited with her sister, and our family will be together again after 10 long, hard days apart!
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