Thursday, April 30, 2009

Thankful and Blessed...One year ago.

I am so blessed.

It was a year ago that Tommy came home from the hospital from his LTP. My mother in law was in town to help us out. Rob was feeling ill. So much so, that he decided a trip to the ER was in order. His mom agreed to keep the boys, including Tommy. She had taken care of him before. Rob was okay to drive himself and I rode with him. He had been having trouble breathing and walking. He had been sleeping sitting up for several weeks. It took him about 15 or so minutes to walk the short distance from the parking lot to the ER. Once there, he sat and I told the nurse that my husband was having chest pain and shortness of breath. As it left my mouth, I knew it sounded bad.

He was admitted within seconds. His oxygen levels were in the low 90's. Uh-oh. Up until this point, we both thought it was a respiratory infection of some sort. They wheeled in a portable EKG. Within minutes, I heard them whispering "a-fib". His heart rate was through the roof, in the mid 200's. As soon as I heard them whispering, I knew we weren't going home.

The doctor came into the room and very bluntly told us that Rob's heart was failing and was having an irregular rhythm...Atrial Fibrillation. His heart could not stay this way. We would have to wait a few hours for a room, but in the meantime, they would start him on Lasix. Tommy was on Lasix, so it was not a new drug for us. It takes the fluid off the body. They gave him a jug with measurements on the side. It didn't take long to fill the jug over and over and over. Over the next few days, he would lose about 20 pounds just in fluids.

Once he was admitted a few hours later, the real "fun" began. The problem with CHF with A-fib is that is causes the top of the heart (the atria) to quiver instead of pump. Fluid backs up into the body causing swelling and blood clots can form. He was poked and prodded, given medication on top of medication. He had ultrasounds on his legs to look for clots and a trans esophageal echo cardiogram (TEE) to look for more clots in his heart. Once the doctors were certain that he didn't have a clot anywhere in his body, they set to converting his heart to natural rhythm.

Unfortunately, Rob's heart did not respond to chemical conversion. Instead, he was shocked back into rhythm. He came back to his room with a sunburn like area on his chest and his back. He was also diagnosed with severe sleep apnea. He was put on a CPAP machine and oxygen. Looking back, we were doing what we always did when we had a medical crisis. Finding out all of the information we could, then setting ourselves to autopilot to get through it all.

I stayed with Rob nearly every second. His mom brought the kids to visit every night. His room was huge! We hooked Tommy to the wall oxygen right next to daddy's, so the kids could stay as long as they wanted without depleting Tommy's oxygen tanks. It was good for all of us. The nurses brought the boys ice cream and encouraged them to stay as long as they wanted, as long as it was not overnight.

Rob spent a week in the hospital, then another 2 weeks at home. It took him a while to get his strength back, but once he was officially diagnosed with the apnea and provided with a home machine, his health dramatically improved.

It's been one year today since that trip to the ER. I started this post by saying I am blessed. His doctor told us in the ER if he had waited just a day or two longer to come in, he would not have walked in at all. I was literally hours away from losing him. I spent that week helping him get out of bed, ordering his meals, adjusting his oxygen and cpap as he slept. Watching over him. I chased away the techs who stuck him so hard he cried and requested someone with more experience. I helped cut his food for him because both hands were full of IVs. Nursed him when the nurses were busy with others. Loved him.

I'm fighting tears right now. I'm so lucky to have my husband still with me. He will have CHF forever and I thank God every day each morning when we wake. He has been in Normal sinus rhythm for a year now. The longer he stays in rhythm, the better his chances are he won't slip out. The chance will always be there, but it gets smaller as each day passes. Rob wears a watch with a heart monitor. He checks his pulse several times a day. He gauges his weight by his wedding ring. He takes his cocktail of medications (5 total) twice a day. He walks and sees his doctor.

I fall asleep beside him every night, thankful he is a bed hog. Thankful he wears a noisy mask to sleep. Thankful he is alive.

Saturday, April 25, 2009

The Trach Tie

While I was off from work and sorting through boxes, I came across a stray trach tie. It had been used and somehow ended up in a box instead of the trash. The SMELL, oh my goodness, it REEKED of my baby! I balled it up against my nose and cried tears of sorrow and happiness. I called Rob and the boys over and we all smelled and remembered Tommy. Matthew asked to keep it and I told him no. I shoved it in my pocket and went back to work going through boxes.

Fast forward to yesterday afternoon. I opened the washer to put everything in the dryer and in the bottom lay the trach tie. I had accidentally washed my jeans with it in the pocket. The smell was gone. I was so sad, but I knew Tommy was still here with me. I still search for his smell every day. I hope as I go through more boxes, I will find more things with his smell.

Wednesday, April 22, 2009


It's been a week since Rob and his uncle went to Charleston to retrieve our things from storage. We have the furniture in place and our fridge hooked up. The boys have their bunk beds put together as well. That's about it. I worked 9 hour shifts on Friday, Saturday and Sunday. Monday we had to run errands in town before I had to be at work that night and today we took my sister to a doctor's appointment before, yes, work again.

Then there is the issue of rain. It has rained pretty much nonstop all week, so there wasn't much Rob could do anyway. It was rain of every kind. Drizzle, thunderstorms, ten second driving rains, rain with the sun shining. You name it, it did it.

That leads us to NOW. Wednesday. Technically, it's Wednesday now, but I haven't been to bed yet. So for argument sake, we will say Wednesday begins when the sun comes up. I have Wednesday and Thursday off, and the sun is going shine all week for us. Rob and I are going to sit outside tomorrow and sort through boxes on the lawn as we unpack them. What we no longer need or want won't even make into the house to be taken back out again. We WILL be done unloading that truck tomorrow!

Then the true fun begins. Just where do I put all of this stuff????

Monday, April 20, 2009

Stellan needs us!

I posted not too long ago about baby Stellan. His surgery is being bumped and could happen as early as tonight. Please pray for him, his family and the surgeons.

8 months?

Has it really been 8 months? It feels like 8 weeks and a lifetime if that makes any sense. Last week, Rob and his uncle went to Charleston and brought all of our things back from storage. It's been bittersweet. On one hand, I'm cheering "yay, we got our stuff!" and on the other, I'm now dealing with opening box after box of Tommy's things. I was wisely advised at the time to just pack up everything and put it in storage with the rest of our things and deal with it later. It's later.

So far I've managed to open a box of his clothes and cry, then I came across his toys. More tears. I told Brandon he could pick out any of the toys he wanted and keep them. We may give the rest to another baby. Haven't decided what to do about the clothes yet. I already gave a lot of them away before we left Charleston and kept the more sentimental pieces. Turns out, I was very sentimental at the time.

I found I did not feel attached to his crib sheets or blankets when I found them. There's one thing that can be donated now. I don't know about anything else yet. We still have half of the trailer to unload before I can start opening boxes and unpacking. I need to get the chore of unloading accomplished first, then I can sit alone while the kids are at school later this week and slowly start the process of dealing with memories.

Thursday, April 16, 2009

New Flowers

I picked these out for Tommy today. Monday will be 8 months....

Wednesday, April 15, 2009

Had I known?

One of the sweet kids I have met online is possibly nearing the end stages of his life. I'm holding out for a miracle, but...

It got me thinking about Tommy's last days. Previously, when we were told that things didn't look good, we got ourselves prepared. We spent our time with Tommy, took lots of pictures, and just waited out whatever the issue was, whether it was pulling through heart surgery or an illness. When he did pass away, it was completely unexpected. No warnings, no preparations, just WHAM!

As this family enters the end stages with their son, and hearing about other families that knew the end was near I have to admit I feel a twinge of jealousy. I didn't get to tell him goodbye. I didn't get those last few pictures. Of course he knew I loved him, but I wanted to TELL him one last time. Had I known that the 45 minutes the team worked on him would have been in vain, I would have asked them to stop and let him pass away in my arms. I was in the room for his first breath and there for his last.

From the last moment I held him alive in my arms until the time I held him again after his death was less than an hour. I wish I had some warning. His dad didn't get to hold him one last time before his death. He arrived at the hospital as they called time of death and the doctor placed his lifeless body in my arms. So many people missed saying goodbye. His grandparents, his brothers.

If only I would have had an inkling that it was the end. Even as the team performed CPR and filled his body with shot after shot of medications to restart his heart, I never thought for a moment that I was watching my son die. I had complete confidence that he was just being stabilized. Even when the doctor told me there was no hope left, I thought he was an idiot. He did not know my Tommy and what a fighter he was!

But in the end, Tommy had stopped fighting. I wish I could have given him a little pep talk beforehand. Something, ANYTHING to prepare myself for his death! In 5 more days, it will be 8 very long months since that horrible day. It has only been in the passed couple of months that I have been able to let myself cry it out. Sure, I have cried many time before over his death. Those were tears of pain and grief. These are tears of cleansing and dealing with that pain.

Saturday, April 11, 2009

On Getting Back

I was just speaking with my mother in law about grief. She was say she feels like she's back. I know what she means. When I first lost Tommy, it felt like I was in another world, parallel to the one we are in now. It was like everyone just carried on as if MY SON wasn't gone. It's not how you feel when you get back from a trip. It's not how you feel when you haven't seen someone for a while. It's like living in a personal war zone for as long as your body can tolerate.

Daily life is getting back to normal a little at a time. Rob is outside doing work on our shed, grandma took the kids for the day to a Derby event. I have to work tonight with errands to run beforehand. Life seems like the typical American family for us. We seem so picture perfect and content from the outside. But look closely....

You'll see a child's face on the wall that isn't here. You'll see ceramic angels all over the house. There's a pallor that feels just a little bit sad when you least expect it. My 5 year old tells strangers out of the blue that his brother died. It's shocking to see such a typical family that looks so normal on the outside to be dealing with such hurt on the inside.

Next week, Rob and his uncle are finally making the trip to Charleston to get our things out of storage. It is the final step to make our move back to KY complete. When we left, I was in such a state of grief. I took some much needed advice and boxed everything of Tommy's up and put it in storage with the rest of our things. Soon, I will be opening those boxes and asking myself if I'm ready to let them go or do they go back in the box? I think it will be a sad time, but not a profoundly sad time. I don't know. Now that I am dwelling on it and trying to prepare myself, I wonder how I will feel.

I am healing a little at a time. Working and talking about Tommy is theraputic to me. Blogging is a blessing! Following the ups and downs of other medically fragile kids keeps me going too. I cheer at their triumphs and cry at their stumbles. When another child dies, all I can think is "there are so many!" How did I not know there were this many parents not rocking their babies?

I have a kid-free afternoon. I miss them already, but in order to "get back", we have to do what is normal. Normal is spending the day with grandma so mom gets a break. Normal is enjoying a beautiful day without guilt. Normal is missing my son and knowing he's still here. My little angel.

Wednesday, April 8, 2009

You just never know what is going to happen in your life at any given moment. Such as the look on a little girl's face. I met a little girl at the store while I was working a few days ago. She had purple hearing aides and spoke beautifully. I had to ask her mom about her speech because Tommy was non verbal. I began signing to the girl and her eyes lit up! I was in HER world and not her in ours. It was such a precious moment and reaffirmed my dreams to go to college this fall.

I have such a desire to be a voice for those who cannot speak. Whether it be because they can't physically speak, don't know what to say, or are too young. I spoke for my sister at the doctor two days ago when she was confused and upset about her treatment plan. I spoke for my husband at the doctor today. In addition to his medical issues, he has ADHD. He can't take meds for it because it conflicts with his heart meds. I speak for my children every time I take them to the doctor for their ADHD issues.

Tommy's disabilities were physical. I was not just talking to his doctors about treatments, but fighting for everything he needed just to live. From getting a pulse oximeter approved to fighting to get a nurse in my home so I could sleep. I fought every day for something for him. I see no need to stop now. Tommy represents those children I desire to help. The ones too sick, but not sick enough for assistance. I want to shout it from the rooftops that our kids need to come FIRST. To Hell with bureaucracy, red tape, and referrals. A sick child should NEVER have to do without medical care while waiting for someone in the food chain to say it's okay.

Back to the little girl I was signing to. I certainly don't know enough sign to consider myself fluent, but I knew just enough to communicate. I felt a pride in myself that I was in her world, but I wanted to do more. I wanted to be fluent. I NEED my education to continue to live in her world too. I don't know where my degree will take me, but wherever it may be, I hope it is filled with little children whose eyes light up when I speak for them.

Diagram of Tommy's Heart Defects

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