Esophagram

Milo has been doing amazing and I am so grateful. But the days are long and hard. Keeping a 16 month old contained to a crib with restraints, a chest tube, and iv cords is near impossible. My mama heart hurts all the time. But especially any time I step away from him. He is hysterical when I even step 3 feet away to use the restroom. I know he calms down once I’m gone but it destroys me to see him like that.

Today Milo had an esophagram. I dread esophagrams. He hasn’t taken anything by mouth in months since he started having serial dilations. They basically put him under x ray and 3 of us hold him down while someone squirts a bottle in his mouth and they take images while he screams kicks and cries…how’d your day go?! Ha! It’s torture for him and torture for me. We were all covered in sweat, tears, and contrast fluids. The esophagram would show if there was a leak caused by surgery, any structuring, or damage post op. And would show if he need more surgery or if we would be able to progress in his recovery.

After the esophagram we went back to Milo’s room and he fell asleep on me for several hours. When I had to leave for the day the surgical team said I most likely wouldn’t hear results until tomorrow due to it being late in the day and Dr. Smithers in an all day surgery (prayers to that family as it was a very king and hard case).

Just as I walked in from the day they called to let us know Dr. Smithers head read the esophagram. Everything looks amazing and they are starting g-tube feeds slowly tonight with hopes of the chest tube coming out tomorrow. He will also start speech therapy tomorrow! This has been so. Damn. Hard. And I know we aren’t out of the woods yet, but I needed this win today. I needed it bad. There is a light at the end of the tunnel.

My entire body is numb from never sitting except for when Milo is on top of me. And I feel like a part of my heart is missing whether I’m with Milo or Charlie. But today we got good news. And tomorrow we make more progress.

Thank you everyone for thinking about us. All of your continued support and kind words. For the Venmo’s, snacks, care packages, gifts for Charlie, gift cards for Jon and I. For cheering for Milo, and Charlie Jon and I too. The truth is, we simply couldn’t do this without our friends and family. It takes a while damn village. And our village is the best out there! Love you all!