Monday, October 17, 2011

Ian James

Day 2 or 3 after his surgery at Tacoma General.

My husband and I were 19 when we had our first child. Some will say, 'Your to young'. It was just right for us. He was a gift. Being first time parents that young was scary. We didn't know what to expect and then find out that he had Gastrochisis. It's a condition where their is a whole in the abdomen wall and his intestines were on the outside of his body. It's not genetic, the doctors told us it was a fluke.



He was born at 34 weeks, they worried about him but as a mom, I knew he was fine. He came out screaming. From then on we were in for a wild ride. I will never forget our first meeting with Dr. Noel, he was the pediatric grastroenterologist that would be taking on Ian's care. He came into my recovery room (maybe an hour post delivery) matter-of-fact gave us our options: 1. We could do nothing and let him starve to death, which would be a few days because he was a healthy guy or 2. We could do everything medically possible for him. Of course we didn't really like option 1. Thus, sending us on a journey of hospitals, surgeries, and meeting some really awesome people (mostly hospital staff).
He loved the lime light @ Omaha, NE. 
After his first surgery, we found out the a bowel extension wouldn't be in his future. We had to get on the list for a transplant. It's a very scary thing talking about a transplant. I have heard of hearts and lungs, but never stomach, small bowel, liver, pancreas, and spleen. So being in the west we naturally went to Omaha, Nebraska. Let me just say we will never go back to Omaha again. Told us Ian needed a transplant but they wouldn't do it because of our insurance; Ian would die by his first birthday; and my husband would become an alcoholic. After we got back to Fort Lewis and talked with our doctors (mainly Dr. Noel) we decided we would never go there again. Dr. Noel worked extremely hard to get us a compassionate reassignment back east, so we could be closer to Pittsburgh and Miami. The two other places that does multiviseral transplants.

Goofing around May of 2003
Ian was evaluated at both places. I will never forget Miami's eval, prior to going Ian was in the ICU because there was a rule that he couldn't have an Octreotide drip on the pediatric floor. Octreotide helped with the bleeding but at the same time kills the liver. So when we flew down to Miami we were admitted to the ICU. The doctors come in and say he looks like he is ICU material. We were transferred to a regular room the next day. Out of all the places I liked Miami the best, which is where Ian ended up getting organs from.

He is telling us she doesn't have to stay right?
He met his sister two weeks before his birthday which ended up being a blessing because we got the call that he had a organ match and needed to get down there. That very same day my dad flew into BWI, we ended up going from the airport to the hospital to send off Ian and J.B. and started driving south to Miami. We didn't know at the time that all of us could have flown with him. We knew we had some time because the surgery takes at least 24+ hours. We made it to Miami, just in time to be told everything went well.


With his Daddy post transplant, got such a great birthday gift.

They keep them sedated for at least two weeks to make sure they don't fidget and dislodge tubing, pull stitches, etc. Our biggest surprise was that his 'boys' were the size of grapefruits and they couldn't even have a diaper on him. I think that was the puffiest I've ever seen him. He didn't even have a nose and his eyes were purple from all the fluid. We were so thankful he made it through.
8 months after his first transplant he got another one a kidney.

One transplant wasn't enough, that he had to have a kidney. Which was ok the picture above is post surgery. Up being center of attention hours post op. He did like the attention. His favorite nurse was Raquel and he loved the male nurses too.

His 2nd birthday. We got to smuggle his sister in.
The day after Abbie's birthday we notice Ian was having a hard time breathing. So we took him into the E.R., I will never forget the look on his face when they put the oxygen on him and he just relaxed. (It was a kick in the stomach because we knew we should have gotten him in sooner). He didn't want to go and be admitted, like he knew he wasn't going to be coming home with us. Which he was right, they did cultures of his throat, they came back positive for a cold. The number one thing we never wanted to hear. The doctors were positive at first, 10 days later he was on the JET ventilator. His body couldn't handle anymore and started coding on us a month later. I have to say that one of my favorite doctors of all time is Dr. Salvaggi (yes that's Italian, he is just as good looking, but an extremely passionate doctor). After they got him stabilize after his second code on the 6 of July, we cornered him outside of the ICU, asked him the hard question. If he will be able to come back from this. He stopped and said, "I don't know Momma. His body is shutting down." Right then and there we knew that we couldn't go on like this, Ian couldn't go on like this and made the decision to hold him while they turned down the support. I will always cherish that time, but I have to say that was one of the worse days of my life. Thank God, for the support we had through out the hospital, our friends that took care of Abbie while that was going on so we could be with him. 

I want people to know that life is to short. I know that is a clique but it is so true. Ian was only with us for two years but he was a light and touched so many lives. I miss him everyday and wish he could have met his younger brother. I have a feeling he is looking over him. I see a lot of Ian in him, they would have cause double the trouble. They were/are sneaky.

Miss you Bubba!!!

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