A wonderful Angel who has heard of our story suggested to me that I create a Paypal button to gather donations. I never knew such a thing existed! So, I have created the button. Here it is
I cannot tell you how much I appreciate the wonderful people out there who are reaching out to Rob, our boys and me in our time of need. I never knew we could be this far down. We not only have our current expenses, but still have a $6000 funeral to pay for, plus finding an apartment and the moving in expenses once we return to Ky.
This has been such a strange few weeks. Before Tommy went into the hospital on July 17, 2008 I had a happy family, a home and a wonderful outlook on life. That month he was in the hospital was the longest he had been away from home since he was born. It was tough, but we were dealing with an infection in his trach. Once that was cleared up, it was decided to proceed with a tonsillectomy because Tommy needed the extra room in his airway. Once he was recovered from that, he began wearing a cap over his trach. That was going well until the morning his surgical site came loose and Tommy began to spit up blood. (Laughing all the while and frightening his nurses!) He was taken back into the OR and the site was cauterized. Two days later, we went back to capping his trach.
Tommy did so wonderfully! We even weaned him from his oxygen for the first time in over a year. I sent my sweet baby to the hospital sick, and there he was, sitting up in his bed proud as a peacock with NO oxygen and breathing with his nose for the first time since he was born. What a miracle. A week later, Tommy was on his way home for the first time with NO trach, no oxygen, no equipment. We were elated. It was a wonderful two days...
Then Tommy began having trouble breathing. It was Thursday night, August 14. Tommy began having a grunting/barking breathing. It was horrendous, but it was the middle of the night and the hospital seemed so far away. I gave him breathing treatments, chest percussions, and finally ran the hot shower while I rocked him on the bathroom floor. After an hour, he finally began to relax and sleep. He was still breathing fast. It was about 4 in the morning when I put him back to bed. Shortly thereafter, Rob would go in for his last day of work.
At noon, Tommy woke up. He was fine. Wonderful, playful, just a little tired. I sat him on the living room floor and began his feeding. (Tommy ate by feeding pump) A few minutes into it, Tommy began having the same difficulty breathing. I called his ENT's office and was instructed to bring him to the ER. We got there and Tommy's sats were about 53% and he was having a terrible time breathing. He was poked at least 4 times in each arm (at the same time) trying to get a good stick on his poor little veins. When you've had as many IV's as Tommy, finding a good stick becomes a game of hide and seek. Once the IV was in and oxygen going, Dr. White, Tommy's ENT came in with the trach. Yep. It went back in. Tommy took a huge breath and looked up at Dr. White with a huge "thank you" in his eyes.
For the next two days, Tommy slept. It was so unusual. He NEVER slept! He was superbaby! I told all of his doctors something was wrong. They did chest xrays, blood samples, everything was normal for Tommy. I was told he was depressed. Whatever! Tommy was falling asleep sitting up. He was NOT depressed! I knew something was wrong, but I didn't know what. The doctors didn't know either. His heart sounded fine, his last echo a month before was great, what was going on? He began needed oxygen again for a few hours at a time. This went on all weekend.
On Monday, Tommy started to perk up a bit and I chalked it up to exhaustion from trying to breathe without his trach. His ENT thought Tommy needed more practice before we took it out, so we were told we could cap again soon, but Tommy kept needing oxygen occassionally, so we had to wean him from it first. On Tuesday, Tommy was taken for a GI test and a swallow study. The GI was perfect, but the swallow study left us all stunned and depressed. The aspirations that Tommy had surgery to correct a year before were now back. With a vengence. How long had he been aspirating?? He was just getting good at eating, now we find out we have to stop. Whatever was best for Tommy, we decided.
On Wednesday August 20, 2008, Tommy woke up desatting and needed a boost in oxygen again. It was thought he had a mucous plug in his lungs, so the respiratory therapist did a dangerous deep suction. He did get back some junk and Tommy improved. Mystery solved? I wasn't so sure, but it worked. That afternoon, his speech therapist came by and gave Tommy colored sterile water. It would help him remember how to swallow but would not hurt his lungs. He coughed blue out of his trach. Aspirations. Afterwards, he had PT where he got to bounce on the exercise ball. Tommy's Favorite! He signed "jump, jump" and pointed and clapped whenever he saw the ball. It was a great workout, Tommy was doing fantastic, and didn't need oxygen. We were able to cap him again!
He did great for a couple of hours and fell asleep. He startled himself awake with some rapid breathing that scared me, so the RT and I uncapped him. Then, for the first time, I felt hospital walls closing in on me. I began to feel angry and stressed out about being there, our home away from home. I tried to sleep, but the nurse woke me up. It was 4 pm. Tommy was awakened too. We put his cap back on his trach and for the next 4 hours, we played, watched "Finding Nemo" over and over. Blew bubbles, had kisses and hugs. He was finally back to my sweet happy baby and we were going HOME in two days!
Then, at 8:30 the new RT came in to do a breathing treatment. Tommy began to be anxious and doing the barking breathing again. The RT said it was just anxiety and if it happened after he left to remove the cap. Tommy looked very uncomfortable and I recognized a dirty diaper. I layed him down and began to change him. Tommy was still having the bowel movement and had stopped mid push. His alarm went off and I shut it off. I wiped Tommy up and then he peed on the bed. Alarm again. As I went to shut it off, I noticed Tommy's heart rate was very low. I looked at Tommy and he was blue, limp and his eyes were rolled in the back of his head. I pulled off the cap and put on the ambu bag and bagged him. He took a breath and his heart rate came up.
I lifted him, shook him and got him awake again. He was fine, but I wasn't. I called the nurse and requested a new RT and for Tommy's doctor to be called. She had me sit and rock him while she changed his sheets. Tommy began to desat a little so we put him on oxygen. I tried to suction him and got back blood. I let the nurse know. A minute or two later, Tommy coughed up fresh blood. Not a lot, just about a teaspoon. He was breathing hard, sweating and just looked scared. The RT had me put him on the bed. We turned his O2 up to 100%. He desatted again. He looked at me, let out a little cry and looked at me. His eyes. He looked so tired and scared. The RT began to bag him and called for the medic.
It was too late. Tommy went into lethal arrhythmia. CPR was done for 45 mintues. 6 doses of epinephrine were given as well as sodium bicarb and atroven to try to restart his heart. At 10:20 pm, the doctor called for Time of Death and I got to hold my sweet Tommy for the last time, but he was already gone. The sweet baby I was holding an hour before was gone. Part of me left with him. Rob got there as the doctors placed Tommy in my arms. He is so fortunate to not have stood in that room as I did and watch him die. Funny, we had saved Tommy so many times before that I didn't know he was dying until he was gone.
His cardiologist came from home. So did his ENT. Both fought tears and were as lost and troubled by his mysterious death as I was. I invited all of the nurses in the hospital at the time to come say goodbye. They'd been loving him since he was born. There were so many tears that night as we all said goodbye. I kept the gown he was wearing and took pictures of him and the room. I cut a lock of his hair then said my goodbyes.
We laid him to rest in the family plot in Ky.
