I hope I can make it to the end of the story without tears. I doubt it. 18 months and 2 days ago, we finally brought Tommy home from the hospital from his month long stay! His tonsils were healded, he had been successfully capped and finally, had his trach taken out. Wednesday night we came home and all was quiet. Thursday, we all went to court. My mother in law was given official full custody of all three kids. No more foster care. Now we had to start parenting classes for the state and jump through a few more hoops, then the kids could finally come home. We had another hurdle to deal with. Rob lost his job. Friday, August 15th was his last day of work. They had given him notice that Monday and told him he could finish out the week. We needed the money, so he worked.
Thursday night, August 14, early morning Friday, August 15th, Tommy began to have a barking cough with severe retractions. Everyone was so exhausted. Rob had to get up in a few hours for work, my mother in law hadn't been sleeping well. I really needed to find a way to help Tommy feel better without waking up everyone in the apartment. I gave him a breathing treatment, but it didn't work, so I took him into the bathroom and started the shower with hot water and sat on the floor doing CPT (tapping all over his chest and back to free up any gunk in his lungs so he could cough it up). He had such a hard time breathing. Every time he would start to settle down, he would almost be asleep and he'd wake himself coughing again. I rocked him on the bathroom floor for an hour until he finally started breathing normally. I took him to the living room and the transition from the warm, moist air to air conditioning started him coughing again. Back to the bathroom for another 30 minutes. When I brought him out again, he was finally able to sleep. I never heard any more from him that night except peaceful breathing. My thought was he forgot how to use his
mouth to breathe and was struggling for air through his closing stoma.
The next day, he woke up fine and I hooked him up to his feed around noon. He started having trouble breathing again, so I called his ENT's nurse. She told me to bring him to the ER. Once we got there, his oxygen sats were in the 50's and he was retracting so hard I thougth his chest would cave in. Respiratory was giving him 100% oxygen, he had a nurse on each side trying to get an IV started. Each one poked him at least twice before they got a good stick. Tommy didn't even care. Dr. White (Tommy's ENT) came in. He took one look at Tommy and popped a trach into his stoma. Tommy took one giant breath and looked at Dr. White with a look that said "thank you!". He admitted Tommy and told me he would be away for the weekend, but would turn over his care to cardiology until he got back Monday. There were no rooms on the cardiology floor, so Tommy would have to go to the regular pediatrics floor.
Once we were in our room, Tommy was not himself. He slept and slept. He fell asleep sitting up while playing. He napped all day and all night. Something was very wrong. Tommy barely took a nap most of the time, and now he was sleeping 23 out of 24 hours. Saturday morning when cardiology rounded, it was not a doctor that saw Tommy on a regular basis. This doctor knew Tommy's case, but had not seen him for a year, even then, had only been on his case once, in cath lab. When I spoke of my concerns, I was told "He must be depressed to be back in the hospital". Excuse me?? Mr. Flirt With Every Nurse loves his second home! I was offered Child Life services instead. By Sunday, he was no better. I begged for them to do a white blood count. I was told all of his tests came back negative when they did them on Friday. On top of it all, he was needing oxygen again and his sats were dipping off and on.
On Monday, Dr. White was back. He said he really didn't know what was going on, but speculated Tommy worked so hard to breathe without his trach that he was just exhausted. He thought maybe we'd gone too fast and Tommy really wasn't ready. He did give us the okay to start capping him again once he was able to make it off of the oxygen again.
Tuesday came. Tommy was taken for an upper GI and a swallow study. The GI showed his Nissen was holding tight and he was not refluxing. The swallow study was a different story. Tommy's swallow had become more motile in the past few months and he had been able to swallow successfully. This was a HUGE deal because he should not have been able to swallow at all because of his defect in his esophagus. However, the swallow study that day showed significant aspirations. I really think we were all ready to cry. We had worked so hard with him. We didn't know if it was because his tonsils were out, because the myotomy he had done the previous December was no longer working, or just a fluke. We also didn't know how long he had been aspirating. It was a sad day. His speech therapists had worked so hard with him for a sucessful swallow and we were back to square one.
~~~~~~~~~~~~~~~If you don't have tissues, get them. ~~~~~~~~~~~~~~~
Wednesday, August 20, 2008. Tommy's oxygen sats kept dropping. Speech came by to give Tommy sterile colored water to help him practice swallowing. Sterile water wouldn't hurt his lungs. It was not good. He coughed blue out of his trach immediately, indicating it had gone to his lungs instead of being swallowed. Respiratory felt the need to do a deep suction on Tommy and put a catheter down into his lungs to try to break loose what would not come up. It was very controlled and normally I would not have consented, but we had tried everything else to get his sats up. He did get back a bit of mucous and Tommy was able to work some of it out. Enough so that his oxygen levels were acceptable enough to put his cap on him. About an hour later, Tommy fell asleep, but was making a strange noise when he breathed. I had respiratory listen. He said to uncap him until he could ask Dr. White what to do.
I was tired, frustrated, angry. In the two years of Tommy's life, I had never hated the hospital until that day. I didn't know why. I wanted to scoop Tommy up and just walk out. I was exhausted. Totally wore out. I laid down on the couch in his room to try to sleep. I had barely dozed off when Tommy's nurse came into the room. She bumped into the night stand sending the phone crashing to the floor waking Tommy and me up. She apologized and then told me that Dr. White said to go ahead with capping as soon as Tommy woke up. Guess what? Her noise woke him. I put his cap on him. It was 4pm. Tommy was looking like himself again, but still very tired. He'd had therapy every day, and was given an antibiotic, but his IV blew out the day before and we were told we were probably going home Thursday, so there was no need to stick him again. His tests came back negative. No need for an IV.
We watched "Nemo" over and over again. He blew me kisses. Signed "I love you". Around 8, an respiratory technician that we didn't know came into our room. He started to give Tommy a breathing treatment and exclaimed "he capped?" Did you not read his chart? He proceded to give Tommy the breathing treatment by mouth. About 3 minutes into it, Tommy began to retract and look very anxious. It told the RT this is what he had done when we brought him into the ER. He told me it was probably just anxiety and if he continued after he left to just take his cap off. I didn't believe him. After he left, Tommy became very agitated. He had terrible, terrible diaper rash from all of the antibiotics and I knew I had to change him right away.
I layed him down and as I was changing him, I noticed he had stopped mid-bowel movement. He was struggling. I thought it was because of the pain. His alarms went off, as they often did when he wiggled. I turned and pushed the button and as I did, Tommy peed on the bed. The alarm went off again and this time I SAW it. His heart rate was dangerously low. I looked at Tommy. His eyes were rolling into the back of his head and he was unconscience. I quickly ripped off the cap and bagged him as I hit the call button. I picked him up and shook him until he cried. Not like a rag doll, but to rouse him. I told the nurse to get me the head of respiratory and cardiology in his room NOW. I told her everything. She though Tommy had a vagal response when he had his bowel movement causing his heart rate to go down. I picked up Tommy and held him and rocked him while she changed his sheets.
Tommy fell asleep on my shoulder, sweating and breathing so fast, it sounded like he was running a marathon. I had his nurse turn on his oxygen for him. I laid Tommy on the bed to suction him and got back blood. The new RT came to the room. She knew Tommy very, very well. She turned his oxygen up to 100% Tommy coughed and blood came out of his trach. He looked at me and let out a little cry. His sats started dropping. 50's, 40's. She started bagging and called for the crash cart. Within a minute, his room was filled with medics. Tommy was coding. His feeding pump was still attached. I turned it off for them. His monitor was still beeping and I could see his sats dropping. They started CPR and I called Rob to come to the hospital. He needed epinephrine for his heart but he had no IV. An emergency one was started in his groin. I saw the blood squirt into the air as they got access and started the epi, sodium bicarb and other medications. I saw and heard his monitor flatline. I turned it off.
The entire time I am 2 feet from them, watching them try to save my son. It never once, NEVER crossed my mind that we were losing him. I knew they would stabilize him and move him to the OR to repair his heart. Three different people tagged in to do CPR. Orders were called for a cuffed trach but one wasn't on the cart. The on call doctor put in a T-tube into Tommy's lungs and bagged him himself. He came to my side and said to me, "When a person has had 3 shots of epinephrine, that usually means they're not coming back." Still in denial, I played along like a trooper and knew at any minute Tommy would be whisked to the OR. Then he said, "We've given him 5". Point blank, I asked him if my baby was dying and he said yes. A chaplain came into the room. He prayed with me and I begged God to save Tommy. The doctor told the medic to give Tommy another shot of epi. I saw Rob come into the nurse's station and I screamed for them to let him in. The doctor said to call time. It was 10:20 pm and my son was gone.
The doctor put him in my arms, just as Rob walked into the room. I told Rob he was gone. Rob said he prayed he was only sleeping when he saw us. "Nemo" continued to play on the tv. I turned down the volume, but let the movie play. One by one, every nurse on duty on the cardiac step down and the PCICU filed in when news that Tommy was gone reached them. They kissed him, rubbed his head and cried with me. Tommy's cardiologist and ENT both came from home and sat and cried with me. The phone rang. It was my mother in law. We told her that he was gone. Rob couldn't take it. Once he knew I had friends on the way to be with me, he left. He needed to be alone.
My friend, Melinda came and her brother Ernie. I've know them both since I was 12. For two hours, I held my sweet boy. I took his picture. I took a lock of his hair. They both held him, and finally, they carried him together to the coronor waiting in the hallway. I shut the door so I couldn't see. I took pictures of the room. I packed up our things. I took the gown he was wearing with me. Then, I walked out of his room.
I didn't change my clothes for 3 days. I couldn't. My shirt still smelled like him. When I did change, I put the shirt away. I still have it in storage. I've never washed it. We had a memorial in Charleston, and a week later, we all traveled to KY to lay him to rest in the family plot in Bardstown Cemetary. We blew bubbles at the service and released balloons to Heaven for him.
Cause of death would be listed as lethal arrythmia and hypoxia (lack of oxygen). Later, his autopsy would tell us that Tommy had undiagnosed bronchopneumonia. We would also find out he was in heart failure. If we had started him on antibiotics the day he came to the ER would it have mattered? I try to keep that question out of my head. In the end, Tommy died of congenital heart defects. No matter how you read the autopsy, his heart stopped beating because it was not strong enough to support his lungs or the rest of his organs.
NINE children a DAY will die from their heart defect. I hope telling Tommy's story has touched a nerve. There is no cure for heart defects and life with a child with CHD is unpredictable. I knew from day one that Tommy would be a fighter. I knew he would have to be no matter what. In the end, the work he came to do on this Earth was done in 22 months, 25 days. Tommy died 35 days shy of his second birthday. On that day, his heart became whole. I know this because he took my heart to Heaven and left his broken one inside me.