Believe it or not…they let Maddi come home just 70 hours after the end of a MAJOR 11 hour surgery!
I think my last update on here was on Thursday…just the day after surgery.
On Friday morning she started raging! She was out of control…trying to scratch my eyes out (remember our fights with scratching). She got her diaper down and scratched her stoma and had blood everywhere.
I was really starting to worry that the meds were causing problems and I had no idea how we’d control her pain without the meds.
Then we managed to get her calmed down and a bit of a nap…and a little food in her and her mood got a bit better.
At one point I went to throw away her diaper and turned around and she was trying to get up! We took a little walk…about 10 ft out the door of her room before she decided it was too far.
Then Dave brought the boys up to bring me dinner and to visit. She literally shot up off the floor when she saw them.
We ate a little and then took another walk around. She went really far this time…trying to keep up with the boys.
She slept a bit better Friday night and then seemed to really turn a corner by Saturday morning.
She seemed a little restless in the room (trying to use the catheter as a jump rope) so we went for a walk. She walked all the way to the front of the hospital and all around.
Then my friend came to sit with her while I got a haircut and while I was gone she texted me that the doctors ok’d her to go home…we were home by 4:15pm.
I was a little worried because she wouldn’t sit on her bottom at all…which makes getting her home IN THE CARSEAT very difficult. She cried a little and then fell asleep. Thinking she got a little overwhelmed, just wanted to get home and shut down.
She cried a bit on and off until about midnight and then she was out until almost 7:30am. So glad to get her some serious sleep.
We decided to keep her “contained” so that the dogs couldn’t get to her and she couldn’t really climb on anything…plus she still won’t sit so she needed to stand at the coffee table to eat.
We also got a bean bag that she lays on so that she can rest (and watch Mickey) but not put any pressure on her booty.
She took a good 3 hour nap…we had a few visitors….it was a good first day home.
She’s still scratching more than I’d prefer…but since I couldn’t put her in time out…I started putting socks on her hands…and that totally stops it! (I know someone probably suggested it to me in the height of the problem, but it kind of waned so I never did it.)
She’s been complaining a bit about her booty tonight…and just had a 10 min scream fest in bed…but she’s really moving around pretty well.
We have to go to the urologist on Wed for a check up…then back again the next Wednesday to remove the catheter and then also the surgeon that day.
We will also be looking forward towards more therapies and the 2nd (and hopefully final) surgery when they reconnect everything and we see if it all works! That one will probably be the end of March beginning of April.
We’re all amazed at her quick recovery and so thankful that we were able to get such great care right here in Austin.
Thank you for all your positive thoughts…and keep them coming!
