I can not even begin to describe, what I felt when I found this bottle at the very back of the medicine cabinet. In all honesty, I knew that I had saved this bottle all those years back. Guess I saved it for a reminder. Strange as that may seem. A bitter sweet reminder.
(click on any image to enlarge)The following images were taken on Carly's second day of being placed on ECMO. This picture was the only picture we could get up close. I believe the nurse took this one for us. You see that little yellow duck? That was with Carly throughout her 30 day ordeal. She loved that duck. She always sucked on the bill (before surgery that is). The nurses made sure it was near her face every day. These pictures are very difficult for me to look at. In fact, I didn't look at them for many, many months after bringing Carly home from that hospital stay.
We couldn't get anywhere near the rest of her body. Only her sweet little head. I was so grateful for that. Not sure who decided to place her head at the end, but I'm so thankful to who ever did this. No doubt, it had nothing to do with them thinking of me...I'm sure it had to do with the best possible set up for Carly and that great big machine.
I'm very thankful for this drug. It no doubt played a huge roll in saving Carly's life after having her first heart surgery. Carly wasn't started on Viagra immediately following her surgery in April '02. The reason it was ever even started on Carly, was due to her crashing/coding 13 hours after surgery. Caused by a pulmonary hemorrhage.
This drug was brought on board after ECMO was unhooked. It was being used to expand the vessels in Carly's lungs. The vessels that were so badly damaged during her hemorrhage. Carly would remain on Viagra for over a year. She was s l o w l y weaned off from it. As you see, if you click on the pic of the medicine bottle, she was on a teeny tiny dose, but it was 4X per day. I had to mix it up for her. I would dissolve the pill into a prescribe amount of water. Mix it up. Pull the exact amount needed for her dose into the syringe, give it to her immediately and then toss the remaining mixture. They would not allow it for future use because they had no data backing up whether or not it would still be "potent" and able to do what it was intended to do.
These little blue pills were very costly. I'm so thankful that we had insurance that covered it. Even though the cardiologist had to fight with the insurance company every 3 months to get the bill paid. The cost for 1 month worth of Viagra (using 4 pills per day) $1,000.00 and some odd cents. That was back in 2003...can't even imagine what the cost is today.
As far as the ECMO goes. Carly came off of it without having any real big issues. There can be many complications going on and coming off of ECMO. The only thing that was a complication for Carly was that she got addicted to very high levels of numerous pain medications. She actually went through terrible, terrible withdraws. So terrible that she would thrash in her bed (of course several of the nurses thought it was all because of Down syndrome. Idiots!) and all her dark hair came out. She came home bald.
Fast forward, March 2005. Carly was in Motts Hospital with a blood infection. During her chemo time. This is when her left side went limp on us. A CAT scan was ordered to view her brain. What they found shocked all of us. Yes, Carly did in fact have a stroke. Years ago as we would eventually find out. Nothing pertaining to the limpness at that time. Her brain did swell from that blood infection. The swelling did cause damage. The damage being in the spot that controls her left arm/hand. It was merely a coincidence that they found that old stroke. Our Neurosurgeon strongly suspected this was a direct result of ECMO.
So, as I go about my day today. I will remain thankful. Thankful for Viagra. Thankful for ECMO. Thankful that God, ultimately healed our daughter. Yes, the machines and drugs played a huge roll, but very few of her ICU docs thought Carly would survive this entire heart ordeal. One doctor in particular..I remember him to this very day. He was NOT one of my favorite docs. He was full of gloom and doom. Anyway, as Carly was wheeled out of ICU on her way to the main heart floor...this doc stopped me. He said, "This is a miracle." He then looked at me and asked, "do you understand what I'm saying?" I said, "yes". He came back with this response, "We didn't do this, Carly was healed by a much Higher Up".
Ahh.....healed, yes she was. For that, I am forever thankful.