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Friday, May 6, 2011

Philly state of mind :) and surgery news

Up at 4:30 am and still going at 6:30!!

Fell asleep 10 minutes into the flight and slept for about a half hour, till the beverage cart came around :(

Drawing in the rental car - getting ttttiiiiirrrrrreeeeedddddd

Then it got quiet :) I drove around a bit so they could sleep.

Her casts came off early so we could get xrays! Nice to give her feet a breather.

they look almost like normal feet :)
 We had her walker and it came in handy cause we used it for her to hold herself up and place her feet on the xray to simulate standing feet. She is so unsteady on her feet that she is petrified of having someone hold her up. The xray tech was holding her while they got xrays of her feet and she was holding on for dear life and shaking like a leaf.
We went up to PT to see if they would look at her walker and adjust it, but they were all busy. So we will see someone on Monday between Dr Z and Dr vB :)
While hanging around clinic we met with the anesthesiologist to get Gerri cleared for surgery just in case. It took all of 5 minutes! So we are set if another opening comes up.
We thought we were also meeting with Dr Z the hand Dr, but they said he was not working today so it would be Monday. (then we ran into him later in the day and he asked why he had not seen us :) )
Dr vB was happy with the  xrays, NOT happy about her not stretching and trying to stand or walk. He just couldn't understand why her knees were SO sensitive. I told him about her sitting in her wheelchair all week and not even getting out of it at school. He had a bit of a serious talk with her about how SHE needed to get herself up and walking, and made her promise she would do it. He did her measurements, then stretched her feet. The whole time Gerri was writhing in pain and fighting him which just made it SO much worse. We then went over her xrays comparing her feet from when we started. The difference is amazing! Her left foot is lagging of course, just as it always is.

He had her lay on her belly while stretching her feet, she pushed against him, crying out whenever the knees were touched or moved in any way. I had to lay over her and hold her hands while she screamed and I told her we were almost done, just count with me or sing the abc's. Victoria walked over to her and held her hand while Gerri screamed. She was absolutely exhausted when we were done.
He then said he needs to redo the tenotomies :( (they were done by our previous ortho) He will also really manipulate her feet while she is out to get the best that he can out of them, especially her left. Since his schedule is SO booked for surgery we do not know when we can get in. The worst part is that she has to stay casted till the tenotomies. And we cannot mold for AFO's till she has the tenotomies :(
So we are not being molded Monday, just recasted. The current plan is to come back in a month to get recasted IF we do not get a call between now and then with a surgery opening. I told him and Mimi that we now have anesthesia clearance and can come with a days notice. If I have to drive here we will do it! It will be a nice break to not come for a month, but that just prolongs the casting. Once she has the tenotomies she will be in short casts again for 3 weeks and then in AFO's. We are all ready to be done with casts!!  Since the tenotomies is a very quick procedure he really hopes we can be fit in sometime before a month is up.
We will revisit the schedule when we get in on Monday :)
We also talked about her hip surgery. It is not quite what we (I) thought it was going to be. He will take out the old (Ukrainian) hardware first, then cut off the head of the femur and fix what was done incorrectly in Kiev, then he will CUT her femur and put a fixator on her leg!! Once the head of the femur is placed correctly she will gain a little bit of length, then the fixator will gain the rest of her leg length difference. He thinks it will only be about 1 to 1 1/2 inches of growth needed.
He does not want to rush it till her feet are done and she is mobile. But on the other hand because of the way the surgery was done in Kiev she has lost quite a bit of bone around the head of the femur :(
So he wants the tenotomies done, mold her feet, get her out of casts, into AFO's and walking. Then do the hip surgery, NO cast, just a fixator bar.
SSSSOOO summer is coming up, we live in FL, it gets VERY hot and time is of the essence.
But on the flip side it would be SO awesome if we could make up some of the leg length now!! Our old ortho was going to wait till Gerri was a pre-teen to try to do something. But this will help her walk so much better!
She luckily did not hear any of the surgery talk at all.
Even the talk about the quick tenotomies was kept out of earshot, since that was the surgery she had last fall and the "quick" surgery ended up taking 2 1/2 hours and the Dr broke her tibia and didn't tell us. It literally took her 3 weeks to recover emotionally from that "quick" surgery.
But we know we are in excellent hands and he will do whatever he needs to for her.

We then met up with Nickee and Monroe and we all drove back to the RMH together. The girls were So excited to have the baby between them in the back seat :)
We relaxed in the play room, Gerri was noticeable tired and aching. Even the pain reliever did not help. We were up in our room by 7:30, no tubs, just bed!!
Absolutely exhausted and sound asleep 5 minutes after they lay down!

6 comments:

Rochelle said...

Bless them both. WOW what a long day. Praying for an opening for surgery soon for her.

travcat said...

How exhausting! I can't get over how Victoria looks bigger than Gerri! Praying she'll have surgery soon!

Jill said...

Nancy, I'm finally catching up here after giving up my google reader for Lent. :-) I can't believe all that you, Gerri and your family have been through. She is such a trooper! Praying for that opening soon so she can get out of those casts!!!

Tracey S. said...

ohh I hope they have an opening in the OR the next month so she can be outta casts SOON! I don't know if the F word (as in fixators) has you nervous or not but if they do I am here to answer any questions, I'm pretty much an expert in living with them. And I bet Gerri's fixator will look pretty close to what I had on when you say me in March. I'm glad Dr.vB is killing two birds with one stone and doing the hip surgery and the osteotomy to start the lengthening in one OR setting, hopefully easier on Gerri in the long run. And lengthening at her age versus after she is done growing will hopefully make her bone growth fantastic. The upside to a fixator over a spica cast is she should be able to bathe and swim within 1-2 weeks of surgeries. And water is the key to healing the pin sites. Seriously I sat in the shower for 20 mins at a time letting the water run over my leg. (although duck tape non-slip shower mats all over the edge and bottom of your tub or you will have black marks or scratch marks all over)

Somewhere Behind the Morning said...

I am so glad that you ditched the old doctor and got someone who is so amazing!!! I love forward-thinking plan-of-action doctors who don't just put things off- how awesome.

Happy Mother's Day to a wonderful mom!!!
xoxoxoxoxoxo

Sally-Girl! said...

If it makes you feel any better, Byrson just started walking yesterday. he has not wanted to use his legs either, but I knew that he would when he was ready as not much can keep him down.

I hope you can get in for surgery sooner as well! This has been a long haul.

Doesn't sound like you will be there on the 23rd and 24th?!?

And email me who you are contacting about the car rental now.
Thanks!