Re: We're home from cast #3

[Guest guest]

Thanks... It was hard to keep my composure, that's for sure, but Noelle was right there and I had to keep it cool for her sake.... And yes, the hotel is absolutely fabulous to us every time we go.... I can't say enough about their hospitality! Steph

From: Kauffunger <slguerra710@ yahoo.com>Subject: [infantile_scoliosi s] We're home from cast #3To: infantile_scoliosis @yahoogroups. comDate: Wednesday, July 30, 2008, 9:52 PM

Hi everyone....

We are back from Rochester with cast #3 applied.... This was a tough trip for us for several reasons and I am truly exhausted. We have a great outcome overall, which is what counts in the end...

On the way up to Rochester, we hit a storm that was pretty bad. We had to pull over for about 15 minutes when the rain got so bad that we could no longer see the road. Then it started to hail... they were the size of quarters... It didn't last long..., but we have scratches on our windshield and paint on our SUV. It was scary for Noelle (us too!), but luckily, as I said, it was over fast.

We saw our casting doc the second day for consultation. Her cast was removed and to me, it looked like she was not as straight as she was out of her first cast. I requested both a supine and standing x-ray, which we did. Our doc acknowledged that the new x-ray looked worse than the last one out of cast, but when he measured there was no change in her curvature... It remained at 15 degrees. The standing x-ray showed 26 degrees. I know from previous posts and from speaking with her doc that it is possible not to get correction in several casts, but I would be lying to say that I wasn't disappointed. The doc offered us a waterproof cast, which I refused, because I know that better correstion can be achieved through the regular cast and because some of you have had some issues with the Gortex casts.... Thanks for those tips!!!!! We did have a nice time swimming and bathing that night.... I

don't think that I slept at all that night just so that I could feel Noelle all snuggled against me.... I so miss that!

The day of casting started very badly.... I got into a bit of a battle with the anesthesiologist. He mentioned that he would probably use some morphine as Noelle came out of anesthesia. I said that I would prefer that he not use it unless it was absolutely neccessary. He wanted to know my reasons and I explained that she had never needed it after her prior casts, that I was concerned about side effects because she never had it before and I preferred to keep the amount of drugs in her system to the most conservative amounts when possible.... He told me that my reasons were not based on anything scientific and that what he did was based on science. And that's what he does there... deal with science every day. Then he smirked. I explained that I thought I was asking for what was in my child's best interest and he was insulted it seemed, because he responded by saying that he had her

best interest at heart and that's why he was there. He spoke so rudely and patronizing to me... You should have heard him belittle me.... I said that I wasn't there to argue with him and that I didn't feel he would understand my reasons regardless of what I said. He told me that Noelle hasn't had a lot of drugs yet and we don't know what her reaction might be to any of them so that excuse wasn't scientifically based. I said to just note my preference, but to do what was best for her during the procedure. I wanted to cry... This man was clearly annoyed with me and now I had to hand Noelle over to him. It sickened me. Luckily, I spoke to our casting doc last and explained what took place and he told me he would take care of it. I expressed that I thought Noelle's back looked worse after the cast and he reassured me that it was still early in the process and that he still felt very

positive about things.... Thank God for him!

We are blessed to say that Noelle, in cast, is down to zero everything! All curves are zero, no rotation and zero RVAD. The doc told us that he used a fair amount of pressure on Noelle this time and to be extra watchful of cast sores and to call him if any problems arise. I'm a little nervous about that, but glad for the FYI. Right now, she is adjusting. Her appetite has lessened a bit and she has been coughing a little and a bit phlegmy after this last cast. This one is pretty tight, like her first, so hopefully in a few days all will return to normal.

Noelle needed a little cast adjustment after her procedure, so we took her back to the casting tech for the trimming. He was in the OR with Noelle during the casting.... When I told him what took place, he told me that I didn't have to deal with that anesthesiologist again if I didn't want to. He made a phone call and now Noelle's chart indicates that he is not allowed to work on her cases. I plan to write the hospital regarding his treatment of me. I hope that this will make him think twice about upsetting any parent who is already in an upsetting situation. In fact, before I left the OR, He looked up at me and said, "and no morphine, right..." with a smile. This was done after Noelle was asleep, but in front of everyone who was present. I simply said to use it only if it was neccessary and left.. We call that a wise guy in my neck of the woods!!!! I hate to harp on it and I will

get over him in a few days, but he is still under my skin!!! He is the only one who has ever been rude to me in Rochester... .. Everyone else has been extraordinary, so I was really taken by surprise!

Anyway, 4 days felt like 4 years, but in the end, my doc pulls through with flying colors. He's the best!

Thanks for letting me ramble and vent! Steph

P.S. Our fridge at the Marriott broke on the frist night we were there, spoiling all of Noelle's milk, snacks and her reflux medication.. . The manager personally grocery shopped and restocked a new fridge for us and comped us a night on our bill.... They handled it excellently!