Thursday, July 31, 2008


Tommy was originally scheduled to get his tonsils out on the 25th of July, but when he got sick and had the outbreak of pseudomonas, I assumed it was no longer in the cards. Imagine my surprise when Monday night, I get a phone call from ENT asking for consent! Tuesday around 1:30, Tommy went into the OR and had his tonsils and adenoids taken out. Since then he's been in some pain and has spiked a couple of fevers. He's on Zosyn again and he's had blood cultures taken so we will see what is going on in a few days.

He was quite combative for the first 24 hours afterwards and required Morphine for his pain. It made his poor nose itch like crazy and he needed benadryl. Then he decided pulling out his IV was a good idea. Last night it had to be put back in because the Zosyn is an IV medication.

Today he is in a much better mood and feels more like himself. The anesthesia always does a number on him for the first couple of days. It's nice knowing he's past that and can start healing.

Wednesday, July 23, 2008


Tommy is in the hospital being treated for pseudomonas. It is a bacteria common in trached children (in the trachea). Treatment is IV for 7 days, so Tommy is hanging out flirting with all of the nurses, watching cartoons and having a grand old time. Other than the IV in his arm, you'd never know there was anything going on with the child. He's getting speech daily and PT an OT several times a week as well. We went to visit him last night and he pointed to a giant orange ball in his room and excitedly signed "jump, jump"! I'm guessing he likes jumping on the ball. Don't know how long they will keep him. It's all kind of an up in the air mess right now.

Tuesday, July 8, 2008

Bubbles, Buckets and Being Silly!

A few new videos of Tommy. He's just loving his PMV and all the noises he can make now.

First, trying to say "bub, bub, bub" while Brandon blows bubbles for him.

Next, more bubbles, lots of vocalizing and silly behavior.

Finally, Tommy has discovered that he can make BIG noises with a bucket!

Friday, July 4, 2008

One Year Ago

Do you remember last 4th of July? What were you doing? I was camped out in a hospital room on 7C of Children's Hospital, Medical University of South Carolina. It was a miracle I was even there.

Two weeks prior, Tommy had come to the hospital for a routine heart cath in preparation for his Glenn reconstructive surgery. It did not happen that way. Instead, we would learn that day that he was no longer a candidate for the surgery due to chronic lung disease. We were so devastated! Here was my tiny little guy getting more and more blue as each day went on before the heart cath. His sats were very low when we were admitted that day, between 44-and about 66%. (normal O2 sats in a healthy person are 100%) Tommy was getting very sick, his shunt was no longer big enough for him and he could not have the Glenn. I was told he would be weaned down to 35% O2 and be sent home to wait it out on oxygen. I asked the doctor that day how long my baby had to live with his current shunt. One month. A death sentence.

Tommy was admitted to the Pediatric Cardiac Intensive Care Unit (PCICU) at that time. He was originally going to be admitted to "the floor" (7C step down unit) but because he had to be sedated and paralyzed for the cath, he needed ICU care until he came out of the sedation. This isn't typical of a heart cath, but Tommy's heart is so unique, it made getting his pressures very difficult. He was on about 40% O2 with sats in the low 70's, mid to high 60's. When he was weaned to 35%, he desatted. My heart was breaking. Rob and I actually discussed funeral plans! Tommy was only 9 months old and I was preparing myself for the worst. I told the Fellow that was on call in the PCICU that night that I was just not comfortable with the idea of sending him home for me to watch him go into cardiac arrest and die. I asked her if we could do another shunt. She gently told me with his numbers, he may not live through the surgery.

4 days passed. They were so long and depressing. Tommy was moved to a private room in the PCICU. I spent my days and nights catching naps on a chair beside him when he slept and talking to him and spending every precious moment I could when he was awake. I took so many pictures. The Fellow had passed on to me that Dr. Bradley (Tommy's surgeon) was considering Tommy's case very carefully. Every day he would pass us during rounds and give me a gentle smile. A reminder he was thinking about us, but had not come to a decision. I cannot imagine the weight on his shoulders. Every day, he must make a decision to save a child's life. This time, it just happened to be mine.

Finally, the day came when he stopped in our room. He said he would attempt to do the Glenn. It was not without risk. If his lungs could not tolerate the pressure, Tommy would go back into surgery to have it taken down. Then we would be back to square one. We discussed the possibility of upsizing his shunt if his pressures were not good once Dr. Bradley had begun the procedure. Tommy was scheduled for first case the next morning. I took a short nap until about 3 in the morning, then returned to his room to help with preparations to take him to the OR at 6. My favorite memory during that time was that Tommy was given Versed to calm him so that his nurse could start an IV. Tommy got the giggles. Even as the nurse was sticking him, he laughed his little head off. It was nice to see him like this, knowing in a few short hours, his life would be in jeopardy as Dr. Bradley made that first incision.

Tommy ended up having his shunt revised to a slightly larger size. During the surgery, I was given a pager and got text alerts on the hour about how surgery was going. Originally, the information given to the nurse handling the texts was told Tommy was having the Glenn. We didn't know until surgery was over that he didn't. Dr. Bradley told us he started the Glenn and announced as such, but as he did the surgery, things didn't look good, so he went with the shunt instead.

Tommy spent about 4 days in PCICU after the surgery and moved to 7C. I watched the fireworks from his window that night thinking Independence had a whole new meaning for Tommy. He was free from the death sentence that had hung over our heads for those several horrible days. He went home a couple of days later on 30% oxygen that was later bumped to 35% which he is still on today.

One year later, Tommy saw his cardiologist yesterday. Once again, we discussed Tommy having a heart cath and the possibility of surgery. There are no answers yet. It might be a couple of weeks until I hear anything. Tommy is doing very well. Today will be the first time he ever sees fireworks. What a bittersweet moment it will be! Every day of Tommy's life is a fight, but he makes it look so effortless. He is my miracle.

Tuesday, July 1, 2008

Tommy Said His First Word!!!

Yes, I cried! He signs "mama" at the end.

Diagram of Tommy's Heart Defects

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