Namine continues to amaze us. After a recasting experience that can only be described as traumatic, she recovered quickly and easily. So much so that Jessica and I are forced to reconsider what we previously thought was an easy decision.

Before I jump into the meat of this post, I want to mention something I forgot to yesterday. At the trach/vent clinic, they told us we don’t need to use Namine’s pulseox anymore. It feels wierd not needing to keep it connected to her all night anymore. But it’s a relief as well, since she hates it on her hand, and obviously we can’t put it on her foot anymore. We can’t get rid of it outright; we still need to do spot checks (hook it up, check her, turn it off) every once in a while, but no longer do we need to monitor her numbers constantly.

After the recasting yesterday, Namine had therapy in the afternoon. She did well, and we have nothing further to report on that front. Although, I will say that her doing well in therapy, after having gone through the recasting awake, is something to report in itself. We’re used to quick recoveries, but this surprised even us.

Last night, after getting home and taking an four-hour afternoon nap, we got Namine up so we could all make dinner. Jessica and I were in the kitchen, while Namine played in the dining room (at least, the hallway that serves as a dining room). I took out my phone to take her picture, and she did something she has rarely done since having her legs casted: she stopped and smiled at the camera.

Namine’s fast recovery has us rethinking our approach to Namine’s recastings, for a few reasons. Number one, there are always risks when putting anybody under with anesthesia, even more so a child. Doing it every week increases that risk even more. Number two, Namine’s third heart surgery, the Fontan, is approaching quickly. It may not be needed for another year, but with her heart needing to get more blood to her healing legs and feet, it may be closer than we think. Number three, she hates staying in the hospital. Nurses and doctors wake her, she’s not allowed to move around, and it’s just not enjoyable for anyone. Not to mention that she always seems to catch something while in the hospital. Number four, she recovered quickly from yesterday’s recasting with no pain medication until it was all over. If, next week, we can premedicate, it might be bearable. (We’re thinking her heavy-duty pain med, plus her prescribed Valium, a half hour before, so it has time to kick in. Then top that with some Motrin immediately prior.)

When I made my post yesterday, it was under the assumption that her recovery from the pain would not be rapid, that she would still be feeling the effects even today. However, that is not the case. So Jessica and I think that doing this in clinic may be the best course of action overall.

What it comes down to is choosing between two very unappealing choices. I believe I’m looking at this clearly. What do you think? Have I lost my mind?

  • CindyB

    Paul/Jess, this is Cindy (Stephanie Brandt’s mom). I have been wanting to share some thoughts with you for some time. First, we went through the series of recasting with Steph at a younger age than Namine and pre-surgery(s) for her bilateral clubfeet. And I must say, our ortho experience(s) with CHW have been much better than yours and it sadness me that you are experiencing what you are. That is not to say we didn’t have a bad expereience prior to CHW with a doc that used plaster casts that we had to remove the night before her appts by soaking and pealing them off ourselves {you don’t wanna know!}. Anyway, all of Steph’s cast changes were done in clinic and there was ALWAYS screaming even when you knew there was no possible way there was physical pain! Now I recognize Namine has healing surgeries and there is undoubtedly pain and discomfort with that, but know there isn’t a young child that is not going to scream when they are approached with that cast saw {it is freightingly loud and the vibrations are also weird/scary for a tiny tot!}. I was going to suggest what it sounds like you now plan to do…pre-medicate. Another approach that worked for us was, lean over her with your face as close to hers as possible which helps to both block her view from what is going on and hold her down while it seems like you’re just given a big hug :); then just talk nonstop to her about anything with a big smile on your face{yes, all this while choking back your own tears}. Someone else can hold her leg(s) if necessary. HaHa, sounds easy, right?!? Trust in yourselves, you are both amazing parents making incredibly difficult decisions for an amazing child! Sorry this got a bit long…

  • Sounds logical to me. I think people often opt for a somewhat more traumatic outpatient procedure to avoid the risks of anesthesia and a hospital stay. Pre-medicating is a very good idea too.

  • TOTALLY agree!!! When you go to Ortho at main campus (we go to New Berlin usually now) do you have to wait FOREVER to get into a room? If so, maybe take that into consideration when figuring out what to give and when. You might want to administer the meds at CHW, rather than before you leave the house, so Namine gets the new casting done during the med peaking, not wearing off. Just a thought…