Anna will not be coming home this weekend. Nor will she be coming home before her treatment in Chicago. Unfortunately for her, we left our house 2 1/2 weeks ago for a trip to Urgent Care because we were worried about dehydration and she won't be home until May ... maybe later.
Am I discouraged? Yes. Am I pissed off? Yes. Do I wish things were different? Yes. Do I have any control? No.
After what seemed like a pretty good morning here for Anna with more movement and activity than she has had in awhile, the rehabilitation team wanted to meet with me this afternoon. The timing was terrible. I had just arrived with the other two kids and we were trying to figure out how and when my mom was going to get them home. So I said a quick good-bye to them and then headed to the meeting room to hear the plan.
Their plan was/is to transport Anna via ambulance to Lurie Children's Hospital in Chicago on Monday, have her undergo a whole series of tests and procedures that afternoon and evening, spend the night there, then be transported to CDH Proton Center on Tuesday for her radiation simulation, then be transported to an inpatient rehabilitation center nearby CDH for about two weeks until her radiation treatments start on March 10.
I was told this information by a whole team of hospital workers/support personnel who understandably have Anna's overall health and safety in mind, but who don't exactly know Anna or our family.
When I called Matt after the meeting to break the news to him, he was also understandably upset. However, he was thinking a bit more clearly than I was and suggested that Anna do a week of rehab here in Madison first before being transported down to Chicago. Our poor daughter hasn't gone more than 48 hours without major surgery, vomiting, diarrhea, and/or severe constipation. No one here knows what she is actually capable of given the chance. If she were to be transported to Chicago on Monday and have the days like they are planning, she will just have more regression and little to no progress.
So ... I talked (rather emotionally, I may say) to our day nurse, who paged the oncology pediatrician who is calling most of the shots. The doctor agreed that it was a good idea and is going to see what she can do to get things moved around.
However, there are lots and lots of people involved in Anna's care and it would require cooperation and extra work from many people in different places for this change of plans to actually work.
So I have one prayer request tonight, and one only.
Please pray that Anna can stay in Madison for a week of rehabilitation before being transported to Chicago.
Thank you.
6 comments:
I will gladly fervently pray.
This I will pray for.
And this is not an unreasonable request. It gives you all time to breathe, to plan, and to regroup.
Prayers sent.
We'll certainly pray that it's a while before you get to Chicago, but once you do please don't hesitate to call if you need anything. A play date for the kids, a home-cooked meal, lunch (my office is less than two miles from Lurie), whatever. I'll DM you my phone number via Facebook; just call or text if you need anything from Leah or me.
You definitely know best. I'll pray very specifically.
Sorry for the disappointment! I am praying...you are right in the title "not fair"!!
Oh that is so disheartening! I'm so sorry. I know how meaningful that would have been and how hopeful you all were. Roller coaster indeed....especially since everyone seemed on board with making it happen and even were lining up home care supplies! How frustrating. Praying she can at least stay near home for another week. Maybe they will let her at least have a day pass out of the hospital? Hugs for you all!
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