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Today was Surgery Day. Will and I woke up early, and Marty arrived shortly thereafter with the blessed gift of coffee. From there, the day was a real blur. Pre-op check-ins with lots of doctors and nurses and residents and med students. Phone calls and emails and texts and messages. Questions and answers and lots and lots of waiting.

Photo May 27, 8 49 51 AM

Working two iPods right up to the last second


Around 8 a.m., Will headed to Surgery. Marty and I walked beside his bed as he was steered through th
e halls, talking to him and reassuring him. We had a chance to meet our Operating Room (OR) nurses, the surgeon, the anesthesiologist, and some of the other OR staff. If I met any of them on the street tonight, I wouldn’t recognize them. I feel like I hardly took in or retained anything today. We are on overload.

But we did meet them, and we answered their questions and they answered ours. Will was given a little medication to help him relax, and they took him back to do the full anesthesia. I kissed him and told him I love him as he was rolled away, around a corner, and out of our sight.

Marty and I headed upstairs to wait. What seemed like five minutes later, the GI Attending came in and said his part of things (the upper endoscopy to check for digestive system problems) went well. They took a little biopsy, which is apparently standard, and that’s it. He saw nothing of concern. This tells us that Will hasn’t been suffering from chronic reflux or something like that.

After about an hour, the surgeon called, letting us know that Will’s G-Tube had been placed successfully and giving me some other instructions I quickly forgot in my exhaustion and joy. I relayed everything to Marty, and we waited for our third update. This one would be from another OR person, telling us everything was done, because we had one more procedure to do: a PICC Line. This is basically an access port that allows for blood draws without any more needle sticks. As they will be closely monitoring Will over the next few days, having this will dramatically reduce his stress and pain. Blood draws have been… let’s go with, “bad.” I’m pretty sure we don’t have a word in English for what they’ve been. So, yeah, this is a big deal.

We waited. And waited. And kept on waiting. Other doctors came and went. A friend brought lunch. We checked in with our families and friends and my office. We were getting pretty nervous. Apparently the PICC line team had been held up in another surgery, so Will had to wait a bit. Finally, they were done, though, and we got the call that Will was in recovery about 3 hours after I kissed him goodbye.

Marty and I rushed down to Surgery and were taken to wash up before touching Will. We hurried over to him, and I draped his blanket (“Blankie”) around his shoulders and head the way he likes. Will has never been a stuffed animal kid. That’s Julia’s turf. Blankie is probably the only soft thing Will has ever been attached to, and he sleeps with “him” every night. He grasped Blankie, even with his eyes still closed, and moaned. He was in pain, and it was horrible. Will had spots of dried blood on his gown, stomach acid draining into a tube, and a tangle of wires all around him. He was hooked up to various monitors and annoying beeping things that scared me every time their patterns changed.

Will looked to me like he was coming out of his own skin. He had that horrible roll-over-to-get-comfortable-but-that-makes-it-worse kind of skin-crawling irritation. He was disoriented, breathing oddly, and letting out little cries. The nurses came to check his breathing. Marty and I, who had each had at least one hand on Will since walking in, had to step back. We held hands and watched these incredible people work on our son. He was fine, they told us, just coming out of the anesthesia.

We played Will’s favorite song, I and Love and You, by the Avett  Brothers. We sang softly to him. We hugged him gently. After a while, we sat quietly and sent a few texts to let the family know Will was ok. We were sent upstairs, where Will was calmer back in “his” room. From there, it was another flurry of activity. The G-Tube nurse, nutritionist, surgery fellow, pediatric Attending, and various nurses and caregivers walked in and out in a steady stream.

Brooks

Brooks

One lady, Anna, who has a bit of a social worker role — I’m honestly not sure of everything she does — brought Will a gift. She had a dark brown Build-A-Bear brand bear with his very own “button,” (The feeding tube access point is called a button.) just like Will has now. She brought us practice tubes and syringes so we could practice on the bear and show Will so he could better understand what we were doing. Will was listening to his favorite song, which has a refrain that goes, “Brooklyn, Brooklyn, take me in.” So we named the bear Brooks, and I sat it on the bed near Will’s head.

Anna stayed to chat a bit, and I told her about the work that my co-workers at Lauren’s Hope and I have been doing for Kids With Courage, a Type 1 Diabetes charity in Kansas City. They provide crates filled with diabetes-related resources to children hospitalized at Children’s Mercy hospital, being diagnosed with Type 1 Diabetes, which, for those of you who are unfamiliar, is a life-long autoimmune disease that causes insulin dependence. Lauren’s Hope designed and provides silicone medical ID bands for these crates so that kids can go home with a medical ID that will last until they have a chance to get one they really like and want. The thing is, those crates also come with the very same bear. Theirs are lighter and don’t have a “button,” but otherwise, they’re the same bear.

It was an odd feeling, being on the receiving end of a bear like that, particularly because I’ve heard from so many Kids With Courage families that the bears are the very first little bit of comfort they grasp onto in the hospital. It was an even odder feeling, an hour later, to turn around and realize that Will was hugging Brooks. In his life, I don’t think I have ever seen him snuggle with a stuffed animal. Ever.

Will is resting well and showing all good signs. We are optimistic that we will go home in a few days.

Once again, thank you for your support and good wishes.

Will and Brooks

Will and Brooks

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