They try to clear out the hospital before holidays so families can be together. I noticed more sad faces than usual at the hospital yesterday. Maybe the tears were a product of all the new admits. Sometimes I get the desire to comfort some of these people, but I always remember that you can never presume anything about anyone or their situation. Sometimes I feel so strong - as if I'm in my own element, playing the role of the parent who is used to life in the ICU. I was feeling that way yesterday... until we had a meeting with a few members of Norah's care team.
We had a preliminary meeting before we had her full care team there to discuss our short term and long term plans for her care and stay at the hospital. We were presented with a heavy reality. Norah won't likely come home for another year, or even longer. Though we all hope for the best, and they do what they can to prevent it, there is still a chance Norah could have an event similar to that which happened last Monday. As difficult as it is to swallow, Norah could still die in the ICU.
I wasn't able to hold back the tears when the doctor said that.
They are going to reach out nationally to find other cases of babies with skeletal dysplasias that needed to be trach'd so early in life. They want to get a better handle on Norah's possible prognosis as well as any possible treatments that they haven't though of. Norah is an extra special case. They haven't had any other patient like her - not only because of her physical challenges, but also because of her sweetness and amazing level of interaction with everyone. Though they may find cases "like" hers, I wouldn't be surprised if she's in a one-of-a-kind situation. Even after genetic testing, they still don't know what sub-type of spondylometaphyseal displasia she has. I vote for naming it after our family if they officially recognize this sub-type as our own.
After the meeting, I was pretty sad. Jeff reminded me that when he was born, his mom was told that Jeff would likely be a "vegetable". They couldn't have been more wrong. The reminder helped me feel a bit better, but I was still feeling low. I said to Jeff "What if...." and couldn't finish the thought. He said the most comforting thing to me. "With Norah, there is no 'what if'. There is only 'right now'." And that is how I'm going to try to live.