Thursday, February 25, 2010

All Blogged Out

A quick update on life.

We attended the God's Special Little Hearts Heart Walk last week. It was wonderful! It's inspiring to see 50 kids running around and not knowing who's a CHD survivor, a sibling, or a friend.

Matthew chose to do a project for school on Vivien Thomas. He was a surgical technician in the 40's and black. He perfected the surgery that went on to be known as the Blalock-Taussig shunt. A life saving procedure for countless children with cyanotic heart defects like Tommy. Dr. Thomas didn't get the recognition he deserved during his life for the amazing work that he did. I'm glad Matthew chose him as his "Inventor" for Black History Month. So many more people are going to be aware of not only Dr. Thomas' life, but of CHDs because of Matthew.

We've finally found the right medication for Brandon!!! It's so nice to see him cooperating with us. He still has outbursts, but he recovers and does what we ask of him. My only concern is he is now VERY chipper! Sometimes to the point I can't get his attention. He just chatters away, happily and content. I'll take that trade off!

Not much to blog about these days. I'm emotionally tired out from posting Tommy's story. Life is very normal and mundane this week. Just the way I like it. Forgive me if I don't blog too much right now. I need to stretch my brain. As I deal with daily life and grief, I am finding it easier to let the tears fall when they need to fall instead of bottling up for later. Same with blogging. I'm able to get my feelings out much easier these days and not waiting until I am over come and need to vent.

I'm not quitting the blog! I just don't have anything interesting going on!

And that is a wonderful thing.

Saturday, February 13, 2010


Once we laid Tommy to rest, my mother in law moved the boys in with her and enrolled them in school. The State of South Carolina would NOT drop our neglect charges until we'd satisfied them. Rob and I came home to our empty home in hopes of one of us getting a job. Neither of us could find one. We lived off of the kindness of strangers and by me donating plasma. I wasn't able to do it often because it made me very, very sick. Nothing like throwing up on yourself in a room full of strangers. Or passing out. I did both on two separate occassions and I kept going back for that $20 every 4 days.

Rob moved out. Grief is a funny thing. I turned it inward on myself and he chose not to deal with it at all. I was alone in my empty home. My kids were half way across the country, my husband was talking divorce and my baby was in Heaven. On top of all of this stress, we had to take parenting classes for social services, and faced foreclosure on our home. I packed and a few times a week, Rob came by and we took our things and put them into storage. His things on one side, mine on the other. Eventually, we finished the classes and jumping through all of the various fire laden hoops that were set before us. On October 30, 2008, 3 and half months after taking our boys away from us, a judge determined that the case had no merit. All charges were dropped and custody returned to us.

Too late. Tommy never came home. During his life, so many organizations had helped us, so I decided it would be best to donate everything of his. We had medical equipment, his crib, clothes, Bumbo chair, boppy pillows, carseats, stroller, swing, diapers, and so much more. I called Tommy's Early Interventionist. They'd helped us so much. When our air conditioner went out in the middle of summer in Charleston's heat, they got us a new unit. Medicaid paid for all of the medical equipment that we could no longer use. I knew there was somebody out there that needed what we had. I don't know how I did it, but we put everything in the back of a truck one afternoon and EI took it away to be given to people in need. When it came time for us to move away once our home was foreclosed on and there was no saving it, I gave them my keys and told them to take everything that was left, including the air conditioning unit.

I moved to Kentucky and Rob moved to another state. About a month later, he would come home to KY. It was a long, hard, painful road, but we worked our marriage out. Honestly, I am glad I had the distraction. Longing for my marriage and my husband gave me something else to focus on. Something I could "fix". I couldn't bring Tommy back. I spent some time in a mental health facility when I moved to KY. I have been on antidepressants for years, but losing so much in such a short time caused me to have a nervous breakdown. Once my medications were adjusted and I had several intense therapy sessions, things started to turn around.

I grieved Tommy slowly. I've never had the bottom fall out. I've had tears flow freely many times, but I've never had what I thought would be grief. I've never curled up in a ball and shut the world out. I've never locked myself in a room and cried for days. I feel sometimes I should have felt that way, but I had a family to put back together. I didn't have time to feel sorry for myself like I should have. Once we were all in KY, we moved to a mobile home owned by Rob's grandmother. We put the kids in school and started them in therapy. I got a job. Rob saw a cardiologist who told him he shouldn't work. Since then, our fight has been for disability that has so far been denied twice.

We laid Tommy to rest in Bardstown Cemetary. We drive passed it at least once a week. He's close to the road and we wave and blow kisses when we drive by. I don't make it into the cemetary very often. I don't know how to drive, so its up to Rob to take me. He still doesn't deal very well and chooses to NOT deal, which is okay if that is what he needs. Going to the cemetary with me is very hard for him. Besides, I know Tommy is always with me, no matter where I am.

Life has gone on. We're all changed. I'll always be Tommy's Mommy. I've given myself permission to be happy. Tommy loved to laugh. It wouldn't be fair to him to not laugh too. Next week, I am going to Owenton, KY for the Heart Walk put on by God's Special Little Hearts. There will be a memorial walk in honor of our angels. I was so lucky to be his mom. So blessed. Every moment with him was a miracle. With every breath that he took and every beat of his heart.

Friday, February 12, 2010

Tommy's Story~Goodbye

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.

Thursday, February 11, 2010

Tommy's Story~A Month In The Hospital

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.

Wednesday, February 10, 2010

Tommy's Story~A Knock at the Door

These next few blog posts are going to excruciating for me to write, but I cannot leave out any part of our story, no matter how horrible and ugly it was.

July 15, 2008 was like any other morning. I woke up when Rob went to work and was in the living room when Brandon woke up. He had just started having mild encopresis (can't hold the bowels) and was wearing just his underwear with a tiny stain. We cuddled on the couch while Tommy and Matthew slept and enjoyed the quiet together. We had breakfast and talked. There was no rush. The house was a mess from never having the time to get anything done except tend to Tommy's needs and get a couple hours of sleep.

There was a knock on the door. I saw police on my door step. Turns out it was a wefare check called in "anonymously". They were told we had a pest problem, which was true. We had roaches. We baited, put out traps and had an exterminator come out once a month. We couldn't just pick up a can and spray. That would have been very dangerous for Tommy. We couldn't use typical household cleaners, use perfume or expose him to anything with a heavy scent. His lungs were so terrible that any odor would be inhaled through his trach and straight into his already damaged lungs. So we dealt with it the best way we could. The exterminator came on days Tommy was in clinic all day so there was no smell when we came home. Funny, we never smelled anything when he was spraying and he tried to convince us that the chemicals were "odorless". I had too much on my plate to argue with him at the time.

The two policemen came with two social workers. Within an hour, my kids were gone. Just like that. They called an ambulance for Tommy's transport and put the other two in the social worker's cars and left. I was given brief reasons for taking them. They could see pests, the toilet hadn't been flushed, sleeves from the boy's clothing were hanging out of the dresser drawers, a pan was soaking in the sink, dirty laundry piled in front of the washer. They took pictures and told me I had a hearing in two days to place the kids in foster care until further notice. No visitation. No going to the hospital to see Tommy. Nothing.

After they left, I started at one end of the house and cleaned to the other end. It took one hour. ONE hour. I took pictures and went to court. I showed them to the social worker, but she said it was too late. An investigation had to done. Tommy was placed on a floor at the hospital that was not familiar with him. I frantically called his doctors to notify them where he was and to have him moved to the cardiac floor where they knew him and I trusted them. My mother in law dropped her life, moved to SC and got an apartment so that she could get custody. They still made her wait three weeks.

I called Tommy's nurses several times a day. They said he was admitted with a fever and there was talk from the on call doctor about giving him antibiotics. I let her know she did NOT want to do that. Tommy was C-Diff positive. Because Tommy had been on antibiotics for so long, his body had rid itself of the good flora in his gut, causing an overpopulation of the Clostridium difficile bacteria. Giving him more antibiotics would cause another flare up and could cause severe dehydration from the number of exploding diapers he would begin to have. I'm so thankful they consulted Tommy's regular doctors first and instead used a specific antibiotic that would combat the c-diff as well as his infection, which turned out to be a mild flare up of pseudomonas, which is a bacteria typically found in people with tracheostomies.

Two horrible days went by before social workers consented to giving me supervised visitation. They named my mother in law as my supervisor. The joke was they were afraid I would come in and dirty his room when the nurses weren't looking. By this time, Tommy had been moved to the cardiac stepdown unit. He was so excited to see us. I had not left him alone in the hospital overnight since he was in PCICU as an infant at birth. Only a few people knew why Tommy was there. I was not ashamed to tell his nurses what had happened. I should have been given help to take care of my family, not had them taken away. We visited him as much as we could. My social worker finally showed mercy and gave me unsupervised visits with Tommy as long as he was in the hospital. I moved right in!

When I wasn't at the hospital, I was "complying" with Social Services. Our home was not only not "clean" enough for them, but they felt the need to tell us we needed things like new kitchen cabinets and new flooring in our bathroom to make the place "livable". It took us about $500+ to make all of the repairs they suggested. A new vanity in the bathroom with a door instead of just a sink. Flooring, cabinets. Cleaning supplies to "prove" we cleaned. About 10 cans of insecticide to "prove" we were doing all we could to remove the pests. An investigation did find that the exterminator was not leaving chemicals in our home, but probably water. Too bad for us, Social Services let us feel that was our fault.

We finally had a court date that found us "under investigation for negligent child abuse" and custody was granted to my mother in law. By this time, Matthew and Brandon had been not only separated from each other, but each had been placed in three separate foster homes each in the three weeks they were away from us. Matthew had been mistreated in at least one and to this day, Brandon doesn't talk about it. He was just 5 and we just don't know what happened or who he lived with or how he was treated. They moved in with my mother in law around the first week of August, and we thought we were finally on the road to putting it all behind us. Tommy was never released to foster care. His wise, caring doctors found reason after reason for Tommy to stay an inpatient. I am so grateful to them for taking such good care of my little guy.

During his stay, Tommy fell in love with a movie. "Finding Nemo". The rooms have on-demand movies and his nurses would flip through movies for him and put one on to entertain him during the day. They tried all of the Disney movies in their arsenal, but "Fish" always won. Tommy would bouce up and down, pointing at the television and sign "fish" until they changed the channel to his favorite. Then he would clap with glee. Once the movie was over, he'd start throwing toys into the hallway until they came to start it over. Just because the stinker couldn't talk, didn't mean he couldn't tell anyone what he wanted and he knew exactly what he wanted!

Tommy would stay in the hospital for 29 days while custody was worked out. That journey was a blessing in disguise.

Monday, February 8, 2010

Tommy's Story~ Communication!

Tommy was doing so well with his Passy-Muir speaking valve. We even began to try tasting and swallowing. He loved blue yogurt. I dyed it blue so we could make sure it was going to his tummy and not his lungs. If it was in his lungs, he would cough out blue. Our cue he was aspirating again. He was learning sign language and was communicating with us. He loved to watch the Signing Time videos. He would clap his hands (to get our attention), point to the television and sign "sign". We would put him in his swing so he could watch tv and he would wiggle and laugh. Matthew, Brandon and I always watched with him so we could learn the signs as well and then we would use them.

Tommy didn't have to communicate his "needs". He didn't feel hungry because he was fed by a pump on a strict schedule (couldn't lose those calories!), he went to sleep on a schedule, he had medications on a schedule, therapy on a schedule. You get the idea. If Tommy communicated it was because he wanted something. He was very good at pointing to what toy he wanted. He'd also let you know when he was done with it because it was promptly thrown. Tommy loved to use his "words" with us, and loved we responded to his signs. His very first sign was "play". What a happy thing!

After that, the signs kept coming.  More, All done, That's enough, Go, Sign, Play, Eat, JUMP! Yes, "jump".

I've touched on Tommy's developmental delays and how he had therapy once a week for pretty much his entire life. Tommy worked HARD on his physical skills. Rolling was first and he learned it was comfy to sleep on his side. He didn't learn to roll to his tummy until he was about 18 months old. After that, he was a tummy sleeper. Sort of. He liked to keep one leg bent just a little, but I do too, so I think that was just a little of me in him. After that, the big stuff started happening. Tommy finally learned to sit on his own! 18 months old and finally able to sit is a huge feat. After that, he learned to turn himself in a circle while sitting. We tried hands and knees, but he wasn't strong enough to hold his body weight. I managed to get him up once or twice, but it wore him out.

So back to "jump". Once he was able to sit on his own, we got him an exersaucer. His nurse had the idea to raise it all the way up so his feet just touched the ground, no slouching with bent knees. Wiggling to get his balance, he realized he could control the saucer and began to jump! His feet stayed on the ground for the most part, but he was jumping. He loved to bounce until fell asleep. Then he would cry because his poor legs hurt, then point and sign to jump again. While in the hospital, he had a therapy ball instead and would get hysterical signing "jump" so the therapist would let him bounce on the ball.

He caught on quickly to the signs. It was amazing when he was in the hospital for a procedure. The nurse had to draw blood. Tommy looked at me with tears in his eyes and signed "hurt". That was an elating, heartbreaking moment. But that was not the best sign he ever learned. From the time Tommy was teeny tiny, Matthew had been my helper. We had a routine every morning for getting our day with Tommy started. First, we layed his quilt on the living room floor and started gathering supplies and medications. A small basin of water, a change of clothes, things to clean and change his trach ties and a bean shaped pillow for Tommy's neck and shoulders. Once everything was in place, the two of us moved Tommy and his trach collar and tubing to the living room. We started at the top (trach) and moved our way down (diaper) until he was clean and dressed. This usually took about 15 minutes and Tommy needed to be distracted so I could change his trach ties without his trach coming out. Matthew would sit behind Tommy on the floor so Tommy would arch his back and look behind him (he had the pillow under his shoulders, so he was seeing Matthew upside down). Matthew would talk to him, sing to him, and hold his hands if he got to grabby. Matthew would sign to him "I love you" by crossing his arms over his chest. He did this every single day for months and months and months.

And then it happened. Tommy signed "I love you" back to Matthew! This was about the same time he figured out to give kisses and hugs too, so we know he knew what he was saying. Perfect love. We had settled into a wonderful routine. Our days were filled with chaos, therapy, doctor's appointments and love. If I could have one wish, it would be to live in June, 2008 forever. It was the happiest time of our lives.

Thursday, February 4, 2010

Tommy's Story~ His Voice!!!

I could write a long blog about what it was like when Tommy got his stents out and started using a Passy Muir Speaking valve, but instead, I'll let you see for yourself.

The first time we heard his voice

The first time we heard him laugh

Finding his voice

Saying "ahhh"


The day I heard LOTS of noise and couldn't figure out why...He learned to do this

Loving the sound of his voice

And finally...the day that brought tears to my eyes.

Wednesday, February 3, 2010

Tommy's Story~ Tracheal Reconstruction and the Unexpected

In April, 2008, Tommy was 19 months old. His heart was holding steady and his lungs were slowly improving, so the decision was made by his doctors to begin a many step process to getting Tommy's trach out permanently. Tommy was given a round of antibiotics at home to keep him well and then he was admitted in late April for a procedure called a laryngo-tracheoplasty, or LTP. It's sometimes called an LTR for laryngo-tracheal-reconstuction.

Tommy was taken to the OR and his ENT harvest a small piece of cartilage from Tommy's ribcage. Then, he lasered out all of the narrowing (stenosis) in Tommy's airway. The cartilage was inserted as a stent to keep the airway open as it healed.

The reason Tommy needed this surgery was because when he was an infant and could not make it off the ventilator, the frequent removal and reinsertion of the breathing tube caused his fragile airway to scar shut above his vocal cords. The extent was not known until a month after his trach was placed. There are 4 grades of stenosis ranging from mild to 100%. Tommy happened to be a grade 4, 100% closure. He had no airway at all other than his trach. This is one of the many reasons we were so diligent with his constant care and why I never left his side. A plug of mucous or accidental removal of his trach would have been a very sudden death by suffocation. Not something I was willing to risk.

Tommy spent two days in the hospital, with the first night in ICU for observation. The next morning, he was playing with his IV tubing so I had to go find him a toy before he got the idea to bite through it. He'd done that with his feeding tubing so I knew he was quite capable. We got moved to the cardiac floor that afternoon for another day or two of recovery. My Mother in Law had come to stay with us for a while, and was with me at the hospital. We took turns with him in ICU due to their no sleeping at bedside policy. His recovery was really amazing. You would have never known he just went through surgery. He was up and playing just 24 hours later.

Tommy's surgery was on a Friday, and by Monday, he was ready to come home. We all went out to dinner as a family and enjoyed being together, but something wasn't quite right. My husband, Rob, had been feeling ill for a while. He couldn't breathe when he slept and had taken to sleeping upright on the living room couch. That evening, he told us he thought it was time to see a doctor because it hurt to breathe. We discussed going to his doctor the next day but in the end, he thought it would be best to go to the emergency room. My mother in law was quite capable of taking care of Tommy's needs and our other boys, so she stayed with them and we left for the ER.

When we got there, every couple of steps, he would stop and gasp for air. I tried to get a wheelchair, but he insisted just to give him a minute. What should have taken 2 minutes to walk from our car to the door took 10. I told the nurse that my husband was having trouble breathing and chest discomfort. Up until this point, everyone thought he had a nasty upper respiratory infection because he was also coughing quite a bit. He was taken straight back and put on a pulse oximeter (that is the little flashy light that goes on your measures the amount of oxygen in the blood). His oxygen was only 94. Red flag number one. After describing his symptoms, he was taken to a room right then and there and the doctor ordered an EKG. Red flag number two. He was put on a heart monitor and his heart rate was well above 300. Red flag number three.

It only took 10 or 20 seconds for the EKG to run and I overheard the tech whisper "Afib". I started cursing like a sailor under my breath. My husband was in serious trouble, but I couldn't let him know. Perk of having a child with a heart defect is knowing anatomy and terminology of the heart. I didn't have to hide it for long because the doctors began flying into the room. They got right to the point. He was in congestive heart failure and atrial fibrillation. In other words, his heart was not efficiently pumping and the top two chambers had begun to quiver rapidly instead of beat. We were told if he had not come in that night, he would not have come in at all. The doctor gave him two days to live without intervention.

Rob was admitted to MUSC's new Heart Center. The program wasn't new, just the building. It was state of the art and he was in very good hands. He was put on medications and oxygen. He lost 20 pounds in fluids in the first 24 hours. He was given medications to keep off the fluids, another to slow down his heart and try to regulate the beats, and blood thinners. He was diagnosed with sleep apnea the moment he fell asleep for the first time on the monitor. His oxygen levels were about 86% when he was sleeping. The sleep apnea is what damaged his heart.

He had head to toe ultrasounds looking for blood clots and finally after three days of not being able to successfully control his heart with medications, he went for a trans esophageal ultrasound. They looked at his heart through a probe placed down his throat. When the all clear was given that he did not have a clot, his doctors stopped his heart and shocked it back into regular sinus rhythm. He spent a total of two weeks in the hospital. I stayed every day with him and my mother in law brought the boys to visit every day. We hooked Tommy up to the wall oxygen next to his daddy so they could stay as long as they wanted. The staff encouraged family being around to improve recovery and spoiled the boys with ice cream.

I did Tommy's trach care at the hospital. I had access to everything I needed and all the oxygen we could use. His incision did look a little off, but it turned out to be okay after a few days. I am so glad my mother in law was able to be there. I don't know what I would have done with Rob in the hospital and Tommy recovering as well. It was a very hard two weeks. Rob spent another two weeks at home before going back to work on light duty, but things were different. Life was more precious.

My mother in law had to go back to KY to her job, so we were alone again, both of them in their own kinds of recovery, both related to their hearts and their lungs. Rob's heart will never recover. CHF is a progressive disease. It can be treated, lifestyles changed to accommodate, and medications to control the symptoms, but he will never be "healed".

Tommy's recovery was much easier. About three weeks after his surgery, we would head back to the hospital for the stents to come out and we would find out how his airway looked..

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.

Diagram of Tommy's Heart Defects

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