Sunday, October 26, 2008

Another Gift From Above

Early this morning, I was going through some old files and videos I'd made of Tommy. Imagine how happy and stunned I was to find this:

It's Tommy at 5 months old wearing a NEMO onesie! How incredible. I had forgotten he ever had it. I gave away many of his clothes a few months later after he outgrew them and never thought of them again. What a pleasure and a treat to find this after I had been sharing his memory with a new friend of mine online.

I hope you enjoy Tommy's hello from Heaven as much as I have. What a blessing.

Friday, October 24, 2008

I Had A Dream About Tommy!

First, a short update. Things are still pretty much where they were last time I updated. I did some testing at a temp agency and found out that I can type 143 wpm with zero errors. That was a confidence booster. I can't wait to have all of this hassle behind us. I can no longer donate plasma. I infiltrated my veins. HUGE bruises. I couldn't move my arm for two days. Oh well. Maybe in a few more weeks, but not anytime soon.

Thank you to those who have donated to both of Tommy's memorial funds. I put the account number and mailing address to the Memorial Fund bank account. Please make checks to the Tommy Dereksen Memorial Fund with the account number in the memo line. You can also donate directly with the paypal button. They are two different accounts, it just depends on how someone chooses to donate.

I know the economy is bad all around. We are definetly feeling it and its NOT a fun place to be. I hate not having a job! I hope things turn around soon for not just us, but for the entire country.

I do want to share a dream I had last week. I dreamed that Tommy's doctors told me that there was no hope and that we should take him home for his last day of life. They took out his trach and stopped all of his medications. We took him home and held him for awhile then put him to bed. The next day he was still alive, and the next and the next! The doctors said it was a miracle. He was completely healed.

I woke up looking for him because it was one of those dreams that just felt so real. It was so comforting to hold Tommy again, to be able to kiss him and hear him laugh. I know he was reaching out to me from Heaven so that we could spend a little time together. I miss him so much. It's been two months since he left us. It doesn't get any easier. It does change from day to day, but I still feel the emptiness every single day.

Wednesday, October 15, 2008


Thank you to all of the kind people that left encouraging comments for me. Sorry to take so long to update, but we no longer have internet. Although I don't feel I owe anyone an explanation, I do not want anyone to think I am using my son's memory for personal gain. Posting asking for help was a last resort. We ARE selling off everything we own, but have not had any takers as of yet. We DID cut out all necessities, as I previously stated, we no longer have internet.

My husband and I can work, we just can't find jobs. We have applied in person, online, temp agencies, unemployement office, you name it, we've tried it. I'm even donating plasma twice a week. Anyone that has followed my blog long enough will also know that my husband, Rob, has congestive heart failure with atrial fibrillation and has to be very careful about what type of work he does. He's not "sick" enough for disability, but not well enough to do hard labor either. Just kind of stuck in the middle. Any of you heart parents will know that heart conditions limit what a person can do.

We are not trying to live off of donations. We merely wanted to be able to come up with enough money to rent a truck and pay for that gas to go halfway across the country so that we can reunite with our children and start our lives over again.

Now and always, we will do "whatever it takes" for our family. That includes begging for compassion from anyone that reads this blog. Everyone is entitled to their own opinions, I respect that, but please, don't belittle me for trying to get home to my children by any means possible.

Wednesday, October 8, 2008

Memorial Fund

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.

Tuesday, October 7, 2008


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Sunday, October 5, 2008

Oh the Stress!

Rob and I are trying to pack and put things into storage so that we can go to KY. So far, we have $150. That is about half of what we need to make the trip, and not nearly enough to cover our expenses while we are still here. The oxygen sensor went out in the van, so now we are sucking gas. That is a $50 part. I found out I may not be able to leave for KY until the first week of November, so there is another $140 in storage fees I have to come up with as well.

Rob and I have a court date that we have to attend before we can leave for good. We're trying to get it moved so I can just take a bus to KY and start work, then I can send Rob back the money and he can bring a truck, but if we have to stay and we can't get the court date moved, then we're going to be in some huge financial trouble! Pray something works out for us and I can hop on that bus and start my job asap!

Oh, and pray we can find a place that has boxes. It's been a nightmare trying to find a business that doesn't compact their boxes.

Diagram of Tommy's Heart Defects

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