Sorry for the late blog posts. I'm still having a lot of trouble blogging from my iPad. It's not uploading photos as easily as it should be. Not bringing my laptop was a mistake. I will come back and "clean up" these posts later.
Last we got a room on the floor and were transferred at 7:30. We had a much better night's sleep and less pestering than in the ICU. Still there has been a lot of unhappiness. The pain seems to be under control on the new Valium (anti-spasm) schedule.
She keeps saying she wants to be done. It's exhausting.She still Keeps holding up 3 fingers for the three day minimal stay she was hoping for. 3 is now the sign for I want to go home now.
We met with PT and learned our ROM exercises. The surgeon showed us her, more aggressive approach (demonstrated herself) to ROM exercises. I loved it! The tough love approach suits my style. So we repeated those a few times today while we have the benefits of the epidural on board. (At the surgeon's suggestion. The PT was of the mind that once was enough for the first day.) Ainsley cried when we had to put the braces back on. She really hates them and it's going to be a tough 6 weeks.
I finally understand the reason for the Sciatic Nerve Precautions. While on an epidural it is possible to damage the Sciatic nerve which could be shortened along with the hamstrings over time. The nerve cannot be operated on (cut a nerve and you "break it") so isn't lengthened during surgery like the hamstrings. Because you don't have normal sensation with the epidural it is possible to stretch it too quickly and be unaware since the patient can't feel it. So we have to be careful until her epidural is removed but then positioning won't be so scary.
Ainsley didn't even want to play with Dolly even though when we packed she was so excited that she had clothes and accessories to bring. I wrapped her legs with casts but I think like a good little mommy she doesn't want her baby to go go through that. Dolly's back in the suitcase. Maybe she can helps us process feelings at home next week. She's in no mood to play.
She sounds a little junky and keeps pointing at her trach stoma scar and crying. I think her vocal cords are sore. I knew there would be trauma from the inevitable crying that comes with a major surgery. I'm very glad we took precautions to protect her airway during intubation. I'm hoping the inactivity isn't contributing to the cause. Hoping for improvement because it seems to be getting worse not better and reminds me of when she was a baby. Her vocal cords looked normal yet there was stridor. After extubation and intubation she got polyps which then turned increasingly into edema so severe her airway was pretty much swollen shut. We don't want that to happen again!
We learned that hot packs on the IV with a net wrap help distract from its presence. A little. Enough to decrease her asking for it to be removed every hour instead of every ten minutes.
The pain team came in to check her epidural leak (it's okay don't worry, it turns out it's pretty normal) and discuss the plan. We transitioned her to oral meds today. She did well so that means we will remove the epidural and Foley in the morning and work on learning to transfer and toilet without any standing. If her pain is managed we will get discharged Friday.
In between "visitors" she got Mickey pancakes for breakfast but barely cracked a smile. They did forget the chocolate chips. A different kid might have really been upset. She took it in stride.
They were diligent about re-positioning her to prevent pressure sores here on the floor (unlike the ICU, ironally). It's a pain but better than getting an infection.
Dr. Yandow came by to cut off her Ace bandages and talk. She is our first female surgeon and I'm thinking it's not a coincidence that she is the first surgeon we have ever had visit EVERY day following surgery. She took her time and as we worked we discussed other conditions like the airway and the surgical precautions and the potential of her having a connective tissue disorder that could affect other things. She inquired about her "facial appearance" and I explained the surgical history from the craniosynostosis, and how it affected her eyes and showed her a picture of Ainsley as a baby and my logic about why I think there is still an issue with the eyes and why....and she agreed with me. WOW! Can I just say again how much I love her?! And she said she would be giving it some thought and seemed genuinely interested in figuring it out. Which honestly is a first. She obviously cares very much about her patients. I think we are in good hands bringing her onto Ainsley's team. There will be a lot of follow up with her over the years.
Here you can see the size of the thigh incisions from the hamstring lengthening.
Her hair was nearly in dreads in the back from rubbing on the pillow. I combed it out and gave her braids and she looked like a different kid.
At the end of the night her "brave doll"(given to her and named by one of her nurses) said good night to the family. She wanted the TV off and to go to bed. At home she always ends the night with a hands up in the air in a questioning way. She wants to know what is happening the next day. Often she asks me to repeat it. She did the same tonight. She is starting to understand both that this part is nearly over but also that it is going to be a long recovery at home. Reminding her why we did it (to make walking easier for her) is only going so far. She typically has a radical improvement during the car ride home from the hospital. I'm hoping for that this time too. It's hard seeing her so unhappy.
.JPG)
No comments:
Post a Comment