I last gave an update on Emmie in April of this year, so about 5 months ago. It's time to update again and ask that again you would pray for Emmie, her doctors and us as parents as we make some difficult decisions. If you need a recap of where we were last spring, please see the post from April.
The question since last spring has been "Is it safe to do a tether cord release surgery on Emmie's spine given her vascular issues and blood pressure fluctuations between her upper body and lower body?" After the "meeting of the minds" took place in April, they decided they would like a more in depth look at Emmie's vascular system. So, in June she had an MRA of her head, chest and abdomen, specifically looking at her vascular system. Since that study was done, it's been relatively quiet. I've been around this block enough to know that no news is good news! So, I wasn't concerned, and didn't try to find out anything. I think I was living in denial a little bit, just enjoying our summer of playing in the pool and basking in the sunshine!
Two weeks ago, Emmie had a check up with her orthopedic doctor, the one who monitors her scoliosis. Dr. Back (as we'll call her) asked about the tether cord surgery, she wanted to know where we were with that, was it scheduled yet, etc. Well, nothing is scheduled, and no one has reached out to me. So, Dr. Back reminded me that Emmie really does need the tether cord release surgery and it will help with some of her spinal issues. Her scoliosis is getting a little worse, so the sooner we can release the tether the better.
Unfortunately, this means the "living in denial' is over for me. Time to make some calls and see where we are with all of that. I put in a call to Emmie's cardiologist and I found out that that they have sent all of Emmie's records to the University of Michigan Children's Hospital (MOTT) for a second opinion. Dr Heart (cardiologist) tells me that MOTT's has the most robust pediatric vascular dept in the country, and she feels that their opinion would be highly valuable in assessing Emmie's needs. She said that they have had Emmie's information for a few weeks now, and that she would make a call to see where they were with everything.
Today I got the call from Dr. Heart to fill me in on everything MOTT's pediatric vascular surgeons think.....
The vascular surgeons at MOTT's think that Emmie is a prime candidate for vascular surgery. They believe that now is the time to act and try to fix some of her vascular abnormalities, since they are now presenting problems that interfere with other procedures she needs (such as tether cord release). The potential outcome of vascular surgery is great, she could be able to come off of most or all medication! However, the 2 options for surgery are very difficult, hard on her body, and present long recovery.
One option is a bypass of the mid-aortic syndrome. This would however require a quadruple bypass because they'd have to create a by pass to each renal artery, one to the large intestine, and one to the bowl. All 4 of those arteries connect to the aorta in the area where her aorta narrows, which decreases the blood flow to those organs.
The second option is to take her renal arteries out, and replant them in a different area of her body so they can connect to the aorta in an area where they will get better blood flow. There is also the possibility of using another artery in her body in place of her renal arteries, if the renal arteries are also narrowed.
Any of the options above will require her to have surgery at the University of Michigan Children's Hospital, which is 4.5 hours away. It will require a 2 week hospital stay and a not so fun recovery for Emmie.
Obviously my first concern is for Emmie. What is best for her, her body, the risks, the outcome, what do we gain from this, is it worth it........ the list of questions running through my mind is overwhelming.
But the mom/wife in me also questions EVERYTHING else. Who will take care of my other kids? How will we afford to stay in Michigan for 2 weeks? I can't stop working for 2 weeks? Tom can't stay there for 2 weeks? How will we pay for the medical bills that will fall in our laps after surgery? How can I not see my other kids for 2 weeks? ..........Another list of questions that are just overwhelming.
I simply can not wrap my mind around all of this yet. The surgeon is supposed to call me on Monday. We will set up an initial appointment with them, then set up a surgery date. It could all happen in as little as 6-8 weeks.
I've spent the majority of the evening just crying about it. I know God has a plan for that girl. His plans are bigger than mine. His plans are better than mine. And I know he works all things together for my good (and hers). Even though these verses run through my head, I struggle with the reality of the situation. She deals with more than most of us have ever had to do. She teaches me everyday what the meaning of strength is. I want to take the burdens from her so badly. My mommy heart just aches for her.
So I ask that you all just pray for us as we make these decisions. Pray for her doctors. Pray that Emmie will be ok with all that is about to happen.
I'll update again when we get more info!