About Me

Ryan's journey has come with many prayers and much hope. While I was pregnant with Ryan it was discovered through an ultra sound that he had a problem, possibly a blockage in his bowel. This could mean a few things but in our case most likely a complication of Cystic Fibrosis. We knew this because my daughter Kayla has CF and upon her ultra sounds we also saw the all too familiar "echogenic bowel". Ryan was born via c-section on May 3, 2005 he weighed 6lbs 10oz. He looked perfect! He was taken to the nursery where it was quickly determined by xray that there was air collecting in his intestine indicitive of a blockage. I was not able to hold my new baby, not allowed to nurse him in fact we didn't even stay in the same hospital. Ryan was transported to All Children's Hospital in St Petersburg at about 2 am. My husband drove to ACH to be with our newborn son. I got the most terrifying call at about 8am from my husband that they had performed surgery on my less than 24 hr infant and had to remove 75% of his intestine, it was so blocked and twisted that they could not save it. He survived the surgery and was on a vent in the nicu still fighting for his life. I left the hospital that afternoon less than 24 hrs after my c-section to be with Ryan.

The next few days were horrible, not knowing if he'd make it or not. We had him baptized in the nicu and sat there just praying with him for hours every day. Ryan is truly a fighter.

The next couple of months were made up of sitting in the nicu with Ryan day in and day out, trying to get him to take in more by mouth and to absorb it. We'd get so far and he'd have a set back. He was finally released and came home for the first time on July 6th, he was 2 mos old. It was so nice to finally have our family under one roof but it was very scary as he was still on TPN with a central line in his chest and a feeding tube in his tiny belly. Anyone who has ever had to deal with home IV's knows about the constant beeping of the machines and all the aggrevation of them. We had hoped that Ryan's intestine would eventually adapt and learn to absorb food but this didn't seem to be happening. We tried enzymes which helped some but still he had to continue on the TPN to stay alive. I hated hooking him up to this "poison" as I called it because I knew it was helping him grow but at the same time it is so damaging to the liver. He was always jaundiced but it was getting worse and his liver counts were on the rise. In October Ryan's liver counts were climbing higher and higher and it was time to discuss another option to get him off of TPN. It was obvious that his bowel was not going to "adapt" like we'd hoped.

Dr. Reinstein, our GI doctor at All Children's along with our CF team discussed with us that he couldn't go on like this. The wanted to send us to a transplant hospital to have an evaluation. Some of our options may include a liver transplant or the "Bianchi" procedure to lengthen the bowel which would then get him to absorb nutrients and get him off of TPN and hopefully save his liver. The wanted to send us to cinncinati or pittsburg but I pushed for Boston since family is there and that's where we're from! I started researching our options and came across the "step" procedure which is where they go in and make cuts into the intestine that is left which lengthens it, making it longer and giving the nutrients time to absorb. The surgeon in Boston was who developed this! Well, this sounded good to us and it would save him from transplant because if we could get him to absorb, get off of TPN this would save his failing liver. Ryan at this point was extreamly jaundiced, weak and still not absorbing. Dr. Reinstein agreed on Boston and began talking with them to get us evaluated.

On November 28th me and Ryan boarded a small medical plane along with a nurse and a respiratory therapist and the pilot. Ryan was on oxygen and IVs for the flight. It was so scary not knowing what we were in for. The flight didn't come without complications either. Before we flew out it was agreed or so we were told from ACH that everthing as far as insurance was all set, approved etc. With just minutes away from leaving we were told that the flight was not preapproved and the hospital would pick up the cost and figure it out, then we were told the hospital would not do this and we had to come up with $13,000!! Thank goodness for plastic! So we paid the money and finally we were on our way. (Not knowing at that time but if we had missed this flight... Ryan may not be here!)

We arrived at the hospital in Boston and were quickly settled into our room. We then met "the team" who would be evaluating Ryan and deciding if he was a candidate for the "step" procedure.

Ryan was not a good candidate for this operation and now our only option to save his life was to list him on the transplant list for a liver and a small bowel. This seemed like such a nightmare. It could be months before a donor became available and Ryan may not have that kind of time. Of course we would go to ANY extent to save our son so we had him "listed" on December 14th. Ryan's liver was really bad at this point and I was told that he wouldn't be leaving the hospital without a transplant. He was weak and becoming unresponsive. He could no longer clot and his lips had turned black. He'd lay there just groaning... it was just awful. When I look back at it I have no idea how we survived it.