Rachel had two big bms tonight and they went well!! She was straining hard but she is ok!! There seems to be no real way to predict when it will be a bad or good one.
Tomorrow at 11am we will be at the Children's Hospital putting an IV in Rachel's body, most likely her head. I'm trying not to think about it too much. I know they do this all the time but I really hope she doesn't cry too hard. After the IV is in, we hope to settle her and keep her happy until 1pm when we do the MRI. We need to put off feeding and try and keep her awake, both of which are challenging for her. We plan to feed her just before the tests, hoping that she will be full(er) and groggy. We need her to be as still as possible to get good pictures.
We received informal word back from Toronto yesterday. Rachel's case was presented there last week. Basically there is no real difference between their opinion and and Edmonton's. One difference is that they think her arteries are ducts, not collateral arteries. (we've been going back and forth on that one) Her 'episodes' seem to point to them being ducts - and they seem to be more dynamic that doctors first thought. (meaning they can shut suddenly and widen, rather than close slowly) Surgically speaking, there is only one pre-transplant surgery that has a remote chance of working temporarily - to keep the ducts open. (with a 90% post surgery mortality rate) Rachel's situation is much more precarious than other babies that get these surgeries, in that her arteries and veins are even more abnormal than usual. And we already know that a transplant is not an option. In summary, (in their view and ours) we are doing the right thing. This wasn't a surprise to us - but it did satisfy some curiousity. The MRI should help us answer the question of what those arteries are doing and how they might act.
Please pray for us tomorrow. Thank-you!
you will be on my mind all day tomorrow
ReplyDeleteMy friend Yumi in Edmonton told me about your story-we met through a New Mom's group and are both first time parents. I believe she heard of your story from a prayer request at her church. I would like to know what your family needs, now and looking to the next few weeks, House cleaning? Ready-meals? Stuff for the older 2? Internet rocket stick for keeping in touch when in hospice? Please let me know by emailing meredithontherun@gmail.com, or by messaging me via Facebook under Meredith Porter or Edmonton Parents with Babies born in 2009 / 2010.
ReplyDeleteMy heart goes out to your family during this difficult time. Your courage and strength are an inspiration to me. Please let us provide you with something that will make this next period of time easier for you.