Friday, March 30, 2012
Jie Jie and I met with a medical specialist today at our local Children's Hospital after getting an outside referral from Kaiser. I'm so happy to say that it was a good experience. He appeared to be very knowledgable, was professional in manor and appearance, experienced, kind, great bedside manner and his nurse practioner was GREAT! He also ordered a test that is standard procedure at the Center of Excellence I've been hoping to be referred to! Jie Jie liked the team, too. The surgeon has referrences appears to have the right kind of experience though not nearly as much as the surgeons at the Center of Excellence in another state that I'd hoped to use.
All of my life, I have never let cultural differences stop me from having any kind of relationship with anyone. For the first time, though, I have to really make a serious consideration and I'd like your comments on this. The surgeon attached to this specialist has a very thick accent. I had him repeat many things many times. I did notice, however that his collegues didn't have this problem. Obviously, they are used to working with him and are familiar with medical terms that I'm just learning. How much would this influence your decision in choosing a surgeon? I will add that I did make sure I had him repeat everything that I couldn't clearly understand so I didn't walk away with any questions, but it did take a lot of extra time. This isn't a communication problem where we aren't getting our information across, it's merely a situation of the surgeon have a super thick accent.
From here on out, the upcoming tests and exams are very invasive, one even requires general anesthesia. I'm starting to muster my courage in order to face this and be strong for my daughter because, ultimately, this will lead to the surgery she needs. This surgery, however, and the treatment afterward, will pretty much determine the quality of life my daughter will have for the rest of her life.
On the plus side, the nurse practioner today agreed with me about discontinuing and over-the-counter medication that the spina bifida nurse practioner at Kaiser had Jie Jie start last week. I actually stopped it yesterday. While it will probably be necessary in the future, it wasn't necessary right now and I'm so happy that this professional agreed and also said that, in this case, I'd know best since I know my child best.
I felt a bit of the weight come off my shoulders today in one area, but feel the weight of the ultimate decision getting heavier. The ultimate decision is whether this is the right surgical team or not. Luckily, I have a few more steps to take in determining this. One, finish the diagnostics. Two, once all the data is in, send it to the Center of Excellence for another opinion and, if necessary, take a trip out there at my own expense, in order to put my mind at rest that I didn't all humanly possible to ensure the best outcome for my daughter's future. After all my research, it will still come down to a leap of faith, both in the team I choose and with God. I'm very comfortable leaving it up to God, but I know that He expects me to do all I can, too, as my child's mother and as His child.