Monday, February 1, 2010

Tommy's Story~~Our New Normal

Our New Normal was filled with oxygen tanks, noisy, hot machines, and not going anywhere without knowing how long we would be gone so we knew how many oxygen tanks to take along. It was filled with not only therapies, doctors visits with his cardiologist, ENT, pulmonologist, and pediatrician. There were flu shots, immunizations, and Synagis shots. It was also filled with a hospital stay once a month for various reasons at what would fondly be called "Chez MUSC".

We begin with September. A beautiful month and time for Sweet Tommy to turn a year old!

How do you celebrate a birthday safely with other people (and their germs) and blow out a candle while on oxygen? Luckily, living in the South, the weather was beautiful enough in September to have an outdoor birthday at a city park. We counted out oxygen tanks and loaded them up in our van so we would not run out. Each tank lasted him about 45 minutes to an hour. His stroller was loaded down with tanks, suction machine, and his goody bag of extra trach supplies. We put a party hat on him and he wore it the entire day. He knew it was his party, despite the other family we were celebrating along with and the plethora of people all around.

When it was time for cake, we gave him his very own little cake to play with. As for a candle, no fire around the oxygen. A friend made us a birthday candle with an LED so Tommy could have a candle for his cake. It was awesome! After singing him "Happy Birthday" and showing him how to touch the cake, he went for it. First one finger, then another, then his hands. Tommy was not a mouth eater, so imagine our surprise when he stuck a finger in his mouth and tasted the chocolate frosting. A moment later, he tried to wipe his eyes and ended up smearing frosting all over his face. He laughed and laughed. It was the best birthday ever.

After his birthday, we settled into our new sleeping arrangements. Or shall I say, lack of sleeping. I had moved out of our bedroom and began sleeping on the couch to be next to Tommy. I slept with one eye and one ear open at all times. The slightest noise woke me. I woke up typically twice a night. Once to refill his feeding and once to suction. If it was raining, I was up and down all night suctioning his trach. There was no sleep, just naps. Matthew and Brandon were home as well. I needed them to be. School is a germy, dirty place. I could not risk Matthew bringing home a virus to Tommy so we began to homeschool him. Matthew was also good at fetching things while I tried to change a diaper, good at holding Tommy's hands and distracting him while I cleaned his trach, and an extra set of eyes so I could run to the bathroom. In between Tommy's feedings, medications, therapies and hospital visits, Matthew and I did lessons.

October was a wonderful month. We tried to do everything a normal, secluded family can do. We trick or treated, we went to dinner and sat wayyyy in the back away from everyone and we went to over to friend's homes. Depending on how long our stay was, we either took tanks or brought the concentrator.

November landed Tommy back in the hospital for 2 weeks with Influenza type A, despite having the flu shot and the booster. He couldn't be at home because our concentrator could not deliver the amount of oxygen he needed. He also needed several breathing treatments a day. This was Tommy's second Thanksgiving. Both of them were spent in the hospital. I had a lovely turkey dinner provided by the hospital and another brought from home. We made it home in time to prepare for...

December was Tommy's surgery to bisect the muscle in his esophagus that prevented his swallow. Following our release, we came home to be readmitted December 30 for a bad cold. We were able to come home on New Year's Eve, and that night, Tommy got to ride home in a forward facing carseart for the first time, since we found he finally weighed 20 pounds.

The end of January and beginning of February brought another hospital stay, this time in the Pediatric ICU. Another bought with the flu, but this time it hit him really hard. He was one sick little fella, but he pulled through and was able to have a heart cath at the end of February. Of course, we were terrified of the results.

The news was there was improvement! His heart was stable and his shunt wide open, so we started down a brand new path. Pushing forward to getting out his trach.

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries