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.

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Diagram of Tommy's Heart Defects

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