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.


Queen Mommy said...

Oh Rene....just reading it all heart breaks for you.

Kristine said...

I don't know what to say. That's just, well the only word that comes to mind is unfair. Absolutely unfair.

Diagram of Tommy's Heart Defects

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