While dealing with all of the crap the state was throwing at us, it was business as usual for Tommy. Meaning he was in the hospital and had procedures scheduled. Once his flareup of pseudomonas was under control, he was ready for his already planned tonsillectomy. The end goal was to get out his trach permanently so that we could move on with his next open heart surgery~~the much anticipated Glenn! Typically the Glenn happens around 6 months old, but Tommy's lungs were nowhere near ideal at that time, and even at 22 months, every day we waited helped his lungs heal that much more.
We spent every day with him and when I was cleared to have unsupervised vistitation, I stayed 24/7 with him. I came home once or twice a week to spend time with the boys with their grandma, to get a fresh set of clothes and off I went again. Laptop with me, I blogged, I took pictures and video, I shared the journey of our medical roller coaster.
At the beginning of August, Tommy's tonsillectomy took place. He did great and was back in his room very soon after and just on Tylenol for a little while. The kid always bounced right back. Two days later, I got a frantic phone call at home from his nurse telling me they needed verbal consent for the OR. ( I kept medical say so over my kids, despite them not being allowed to live in my home. Whatever. Stupid Social Services....) I rushed to the hospital and got the details. In the end, he had just burst his tonsillectomy site and they went into the OR to cauterize it to stop the bleeding. The procedure was over in less than an hour. Leading up to it turned out to be a great story from the nurse's point of view.
She had come into the room to get his vitals for the morning, get him up and ready for the day. He was laughing and playing with her as always when all of a sudden he coughed and spewed bright red blood from his mouth and trach. They also drew blood from his Gtube. Since it was a Monday morning, rounds were going on. Tommy packed about 20 people into his room as it was tried to determine why a (still laughing) baby was spewing blood. They said he never did stop laughing or playing. Didn't care he was coughing up blood. His nurse was quite a wreck though!
Our plan for that morning had been to start capping his trach to see how he did not using it, but just his mouth and nose to breathe. After the OR trip, it was postponed for another week to be sure he was healed first. Like most kids with medical issues, Tommy set his own schedule. We had a quiet week of playing, healing and lots and lots of "Finding Nemo".
Finally, the day came! The day Tommy would try his cap. It was thought he would need oxygen since he had been on it for over a year. The repiratory therapists tried to put a nasal cannula on Tommy to wear with his cap. He wasn't having it. Everyone thought this was a huge setback, until it was realized he was holding his own. Sure, his sats were hovering around 70ish, but they weren't dropping. One hour. Two hours. Still capped. Breathing with just his nose and NOT on oxygen. I can't tell you how I felt to see that! Two hours became twelve and before I could blink, it was the next day.
Tommy was capped for three days and then we had our miracle. The day we had waited to happen for so long. August 11, 2008, Tommy had his trach taken out! Here's video we made of the moment. He's only crying because the doctor put on gloves. Gloves usually meant someone was about to stick him, so he was a little anxious. Plus, he didn't know the doctor very well.
We spent 3 days in the hospital for observation then we were sent "home". Home was to my mother in law's apartment, not our home. The kids weren't allowed there until the investigation was complete. We left on August 13th. A Wednesday, with nothing but an umbrella stroller. No oxygen, no machines, no trach supplies, just a kid and his mom and a giant smile on both of our faces! It was the last time I would take pictures of Tommy. I didn't know. I wish I had known.