Devin's Story: A new heart

It has been awhile since we posted last. Good news….he received a new heart on 9/24/05.

We would like to take this time to thank the family who donated their child’s organs and we feel for their lost. We can only image how difficult it is to lose a child at such a young age. We would like to ask everyone to pray with us to give the family strength in such a difficult time, and give them comfort that their child will always live on through Devin and so many other children’s lives that they helped save. We do not know much about the donor family but that they live somewhere in Central California. Because of legal reason we are not allowed much more information, but would love to know more about the family and meet them to give thanks in person when they are ready.

I (Mommy) will start from the beginning. My parents were down visiting (Palo Alto, CA) Devin and I for the weekend of 9/22/05. My mother had not seen Devin since we left in June and was excited to see him. They planned the weekend to get us out and about. They were taking us to Great America (amusement park); it was really just for me.

On top Mom, Devin and Grandma at Great America. On bottom Grandpa and Devin.

The next day we were going to go to the zoo. I would go on a ride with one parent while the other parent would watch Devin. Than we would switch. Well, my step father and I were in line to get on a roller coaster when the call came. The roller coaster was pulling up for us to get in next and than my phone rang. I looked at it saw a number that area code was 650 (Palo Alto are code). I got excited because the only people who have my phone number in Palo Alto area is the hospital. I got nervous and than started second guessing if it was the transplant call or not. I answered the phone and all I heard was that the doctor was on the transplant team. My heart sank. I could not believe that it was the call. I started going back out of the line weaving between people and ready to run out of the park. Than the doctor said, “We think we might have a heart for Devin.” I went speechless. I could not believe it was the call. At that moment I wanted to get off the phone ASAP and call Devin’s Dad, but the doctor had questions. The doctor asked if Devin has been sick in the pass week or two (No) and some others. He than said, “We than I think we have a heart for him and how soon can you get to the hospital.” I was freaking out now. The one time that Devin and I are away from the hospital we get the call. I told him where we were and said it will take us 30 – 45 minutes to get back. At this time it was 1:30PM on 9/23/05. He told me that they will not get a bed open until 3PM and that surgery will not happen until 8PM. He said that we should get as soon as we can and that he will call back to confirm about the bed opening. My step father followed my out of the line and he asked if this was it. I shook my head yes and we started getting off the ride platform. We got to my mom and told here it was time and we need to leave. I called Devin’s Dad at work and told him. He had to ask a couple times. He was in total disbelief. I told him he needs to get here ASAP. We ran out of the park and got into the car as fast as we can. We got back to the Ronald McDonald House, all the while Devin was sleeping. He had no idea what was about to happen. The doctor called back and told us exactly where we needed to go and do. We went to the hospital and checked in. We had to wait for the bed to be available since we were early. We go to the room and they got Devin ready.

On top Mom and Devin waiting for transplant time. Yeah Dad made it (Mom & Devin) on bottom.

We were waiting. Dad on the other hand was running frantic. He had to leave work, and get Devin’s other siblings situated. Devin’s Uncle booked two flights for Dad just incase he was unable to make the first flight. Amazingly He made the first flight out. He almost did not make it. He got to the airport and checked-in. The check-in person told him he better hurry or he wont make it because the plane was about to leave. Devin’s Dad told of the situation and they held the plane for him. (Thank you so every much to Southwest Airlines for holding the plane. We are every grateful.) He was on the plane and got to the hospital in time. We were so excited to see him.

On top Devin and Dad hanging out. On bottom Mom, Dad, and Devin still waiting.

We could not stop hugging each other and asking if this was for real. We got the news later that they would not be able to do the transplant until 11AM the next day. The transplant team had to go see the heart themselves to make sure it was a good match and than they also needed to place all the other organs before they start anything. We did not mind the wait. We waited this long we can wait a little longer. We were excited yet nervous. This is a big surgery where anything can happen. While we were waiting we got a room mate. They were flown in from Oregon. I noticed the transport team was from Doernbecher. It was crazy to see them there. The family had a little baby needed a liver transplant. We talked to the family and they their son was the same blood type and age. We figured they were going to get the organ from the same donor. What a small world. Both families from Oregon needing transplants and getting the organs from the same donor. It’s amazing, that is all I can say.

On top nurses showing Devin and Mom where to go for the surgery. On bottom Devin after surgery.

The next morning they took Devin at 11AM (Sunday 9/24). We were so nervous waiting. The surgery took about 7 hours. Devin did great. No complications or anything. We got to go see him He looked great. No ECMO machine hooked up to him, not as many tubes coming out of him as before. He looked the same as when he went in. We were amazed. The following day they took the breathing tube out (Monday 9/25). Remembering them telling us that they were going to take it out and we looked at them like, what! So soon! They took it out and Devin did great. They put him on oxygen just incase he had trouble but he did not. The next day he went off pain medication and started to stool a lot (Tuesday 9/26). The following day the doctors took out one of two chest tubes that he still had (Wednesday 9/27). The chest tubes are to let fluid around the heart to drain out. He did great with it coming out. He looked a little relieved but still uncomfortable with the other tube still in. On Thursday (9/28) he was moved out of the ICU, and took the final chest tube out. On Friday (9/29) they took IV’s out, and EG line from his neck out. They also started him on bolus feeds again and gave us a blood pressure kit to practice taking his blood pressure. They told us that we will have to take his blood pressure twice a day to watch it.

On top Devin with on chest tube to go and Dad. On botom Devin ready to go home already.

The weekend went smoothly, no troubles. On Monday (10/2) speech therapy came and evaluated Devin. They told us that Devin is far behind and will need to work with them to help get him up to speed. Physical therapy saw him as well and worked with him on standing again. He was wobbly and did not have the strength to stand for long. He also had a swallow test done and he passed. We wanted to make sure that he can swallow food so that we can start working with him to eat by mouth. Yeah! On Tuesday (10/3) he had a biopsy and did well.
A biopsy is when they put a catheter into his vain from the neck or groin. The catheter will go to the heart and take little piece of the heart. With these pieces they will test his rejection level. This is to see if the body is accepting the heart or not. There are 4 stages of rejection. Stage zero is like you, where the body is not fight the heart and accepts it. Stage 1 and 2 is where the white blood cells in your body are hanging around in the heart. They are not attacking yet. The White blood cells are the cells that fight off colds and viruses. Normally they are not in the heart. The doctors will look at his anti-rejection medication to get the levels organized to get the rejection lowered. Stage 3 is when the white blood cells are attaching and doing damage to the heart. Again with adjusting his medication level it should go down. At this level he would have to be hospitalized. Final it stage 4, this stage is when the medication are not helping and a new heart will be needed. This means going back onto the heart transplant list again.
Devin’s results came back at stage 1A which is good. Devin was let out of the hospital on that Friday (10/6). It was a little stressful the first day. He has about 12 new medications and a new routine I had to get use too. Taking his blood pressure twice a day before medications, it was all overwhelming. He also came home with a Heckman line that is in his shoulder. It is an IV line that is tunneled under the skin and goes close to the heart in the vain. He gets infusions every other week of a medication. He goes to the hospital every other week to get biopsy. Weekly to the hospital have clinic check-up. They need to have blood draws done once in awhile to check medication levels. Otherwise Devin is doing great and we are hoping to be home for the Christmas. I almost forgot, Devin is walking all on his own now. There is not stopping him now.