She Will Amaze You

Today was a heavy day. I'm glad I waited until now to write about it, I've had time to think things over, and I'm alone, which always helps my thought process.

This morning, we met with Ellie's care team. They had just met to discuss her case. The plan is:
- spend the next month in the ICU at nights. Because Ellie's growth hormone stimulation study came back a "pass", meaning she produces some amount of gh, and because growth is done during deep sleep, and until getting her bipap, Ellie wasn't achieving deep sleep, there is a possibility that now that her sleep apnea is resolved (at least to an acceptable level), she might start to grow on her own. At this point, they want Ellie to grow just big enough to fit into a proper bipap mask. Once she reaches that point, she can start gh safely.

The problem, is that Ellie isn't growing, and she has so far to go before fitting the new mask. She is gaining, but she isn't growing. In the last month she grew 4mm. Millimeters! The doctors want to give her as much of a chance to do this on her own, but endocrinology has put a cap on the waiting period. They want to start her on growth hormone within 2-3 months, no longer. At this point, they want to do everything they can to ensure she gets the maximum brain boosting potential of the growth hormones.

If, within 3-4 weeks, Ellie hasn't grown, our doctors and we are choosing to go a more invasive route. I trust our respirologist as much as I trust my own father. He has been looking after kids airways for a long, long time, and said that he would not approve Ellie starting gh without first securing her airway. Around the beginning of February, Ellie would receive a short-term tracheostomy. Short term, being 6 months to one year, long enough to let the growth hormones do their thing, and build up muscle mass to hopefully resolve the obstructions. Going with the trach, would be the placement of a g-tube. They go hand in hand, apparently.

I am less apprehensive of the g-tube than the trach, but I know that it will all become second nature relatively quickly. After the surgery, Ellie will stay in the ICU for another 1-2 months, so we`re looking at spending about 3 months there all together. Yep, three months.

Tomorrow, I`m meeting with the hospital social worker, to see if we can arrange for some sort of local day care for Jakob. I don't know how I'm going to manage when my parents go back to London, if I don't have some sort of care plan in place for him. We will also be setting up a daily schedule for Ellie, with the help of the awesome charge nurse, to get her into a routine of physical and occupational therapies.

I am worried how all this will go, but I know that in the long run, we're doing what is best for our little girl. I know that a lot of PWS parents will have a different opinion on our plan, but our doctors have done a lot of research, talked with a lot of other doctors around the world, and see Ellie every day, first hand. While our plan for Ellie isn't conventional, it is tailored to fit her needs, and I think it will all be okay. Ellie should be cleared of the trach, the g-tube and long hospital stays by the time she starts remembering it all.

It's going to be an interesting year.