What a Difference a Day Makes

By yesterday evening, we were frustrated. Disheartened. Unsure. If you've been following along, you saw it in our posts. The fact that each Brian and I wrote a post yesterday probably clued you in that there was a lot on our minds, and it wasn't all cheery. But today started with the reality that the surgery was going to happen today...and that in and of itself was an important step towards our eventual goal of returning home once again! Also, we were all in agreement to go ahead with the MST procedure, and whatever happened as a result...well, we would live with that result and move forward from there.

So we headed down to surgery, if not with a cheery excitement, at least with a sense of relief that this was our last trip to surgery for this round. I can't speak for any other surgical department, but here at Cook Children's, they work hard to break any tension in the pre-surgery procedures by interacting joyfully with the patient, and employing humor whenever appropriate. A great fit for Adam as well as for Brian and me! The surgery started earlier and moved more quickly than the other one, and we were being invited to meet up again with Adam by around 1:00 pm in ICU. At this point, he was still rather groggy, but looked fine.

Towards the end of the afternoon, he began to come around more, and agreed to try some ice chips, which led to a popsicle, which led to a pudding cup, which led to ordering soup from the cafeteria, which he topped off with applesauce and another pudding cup! In other words...for the first time all week, he really had an appetite! We also found something on TV that looked interesting, and he ended up smiling, and almost laughing at something silly on the show. Wow! Because of the position of the TV relative to his bed, it encouraged him to open his swollen eye, and over the course of the evening, the swelling really decreased and he was able to open the eye almost to the same extent as the other one!!!

Suddenly worrying about what may or may not have resulted from the surgery seemed to take a back seat to the joy in welcoming back a smiling and hungry version of Adam! I'm sure that there will be more bumps in the road to recovery, but today reminded us that we are going to get to where we need to be.

We also heard that we will likely be released to go home early next week...more on that front as we get to that point. The fact that this is going to be a shorter visit that we originally thought has a lot to do with how quickly Adam went into seizures after the first surgery, allowing the doctors to gain the data needed for decision making within two days. We are very grateful, and look forward to moving home as soon as it is safe and appropriate for Adam to be discharged from the hospital.

We look forward to learning more from the doctors about where we go from here in terms of Adam's treatment and medications, the possibility of investigating Deep Brain Stimulation for dystonia down the road, and what we should be watching for in terms of possible benefits from today's surgery. All in all, a much more positive outcome than we thought possible yesterday at this time.

Thanks again for sticking with us during this adventure--it has really helped to know that we have a great network of incredible people who are supporting us through "the good, the bad, and the ugly" of this grand adventure!