ZERO, YEAH!!!

Hello everyone! Devin is doing great. He had a biopsy on Wednesday and it came back zero. NO REJECTION, YEAH!!!!!!!!!!!!!!!!!!!! We are so happy. We always get nervous around biopsy time. With past experiences we know that anything can happen. We are doing biopsies at Doernbecher. Which is nice, since going to Standford every month would be draining on money. We have already maxed out on our primary insurance transplant coverage. We will have to go to Stanford on the yearly biopsies. I do not know how we will do it but we will figure it out some how. It would be nice to see everyone at Standford and see other transplant friends. We do miss all our transplant friends every much, and keep you all in our thoughts and prayers. His cyclo level was high, about 594. The doctors want the level between 300 and 350. They lowered his cyclo med and want us to get blood drawn again on Monday. Otherwise Devin is doing great. Right now his brother, who he loves so much, is fighting a cold. It so hard to keep Devin from getting it especially when all he want to do is play and follow Masen everywhere. A lot of hand washing and sanitizing going on right now. The kids enjoyed snow days all last week. Boy, did they get cabin fever fast. Devin loved the snow. If I let him he would of just lived in it. Everyone is doing great, finally back into a routine. Just enjoying each other as much as possible. Thank you everyone for all your prayers.

WE ARE HOME!!!

Hey, everyone. We returned home on 12/16/06. We are so glad to be home. Devin's biopsy went great on the 12th. It came back a zero. Yeah!!! His body is not rejecting his heart. We were so happy to hear that because that was your ticket home. Matt drove down to take us home. We had accumulated so much stuff that flying was out of the question. We packed every thing up and got out of town. Of course we had to leave a man behind. Shawn Stockwell has been waiting for a heart since April and it still waiting. He was one of our many friends we had made at the Ronald McDonald House in Palo Alto. We ask everyone to say a prayer for him. They are eager in getting home to Alaska. You can read more on Devin's friends on the left of the page. Just click on their websites. Our trip home went great. No trouble with snow at Grant Pass and it was smooth sailing all the way home. Devin did catch a little cold on the way. I think it was the change of weather. Devin was excited to see his siblings M'Kenzi, Rylie, and Masen. He could not go to see sleep that night because he was so excited. The kids are all happy we are home. No more Ramen for Dinner. Hehehe! We have been cleaning and organizing the place. We had the best Christmas ever. Just being home made it so great. Yesterday we had Devin's first appointment with his transplant specialist at Doernbecher. She is great. Dr. Armsby does the Biopsies so we will not have to go to Seattle or Stanford for them, which is nice to save money. Now that we have reach Devin's life time maximum on transplant for our insurance it helps. She was trained on Biopsies from Dr. Perry at Stanford. Dr. Perry did all Devin's biopsies while we were at Stanford. He is awesome. Not only does he do a great job but he is fast. It is nice to know that Dr. Armsby is not completely new and that she has connections with doctors that we know and know us as well. We are sad that Dr. Law left Doernbecher but we send him our best wishes. We will have weekly appointments with Dr. Armsby for a little so she can get a baseline with him. Devin's next biopsy will be the 2nd week of January. He loves being home. He is enjoying the attention from his siblings, all the room to play, and playing with Dad. We will keep you guys updated as much as possible. By the way I just washed my cell phone in the washing machine. I know, I know. Just letting people know that it is not working and the best way to get a hold of us is by e-mail: mej81@comcast.net. I will let you guys know when the cell phone is up and running again. Melinda if you see this plaese call I lost your phone number. Thank you everyone for your support. Talk you guys soon.

Almost Home for Christmas!!!

Happy Holiday’s! We had a good Thanksgiving. Volunteers made dinner for everyone at the Ronald McDonald House which was good. Devin vomited all over mommy’s food. Otherwise it was just another day for us. Devin has not really totally recovered from the vomiting. He vomits once a day but in the pass two days he had not vomited. Well, yesterday he did but we are not counting it because he ate a crayon that made him vomit. So far, so good. Last Friday we were in the emergency room because I was not certain if the central line was infected. I noticed doing the dressing change on the line that the site looked more red and swollen than normal. The first thing I thought was line infection and that he would need that out ASAP. They did blood test and they all came back negative. Yeah!!! He was also losing weight from vomiting and getting enough calories. He got down to 26lbs, but he is up to 27lbs in one week. We saw the GI specialist about the losing weight and vomiting, they said it was nothing to concerning. He just needs more milk and the vomiting might be from the stomach virus that is hanging around. We got sort of an answer from the doctors about going home. Devin has a biopsy on Tuesday and if the result come back good than we will be able to go home really soon. They would just have to see him for one last look the week after biopsy and we are home free. We cannot wait and will being praying for do results

Devin playing trains with Noah Baderman (heart transplant on 9/1/06 from Idaho.) Devin showing off him mustache. Watch out ladies!!!

Devin going for a car ride. Devin is his mask.

Devin getting tired and waiting his Mommy. Devin magically is a wake and trying to see if there are any girls around to show off his mustache too.

Devin trying to pick up a piece of bread with two spoons. Devin just being his regular goofy self.

Devin playing with trains. He LOVES anything with wheels. Devin nibbling some food.

Stomach Virus..Oh no!

Devin was admitted to the hospital early Monday morning. He was vomiting all night on Sunday and called the doctors that to see what to do. They told us to go in so they can check him out. They wanted to make sure his heart function was still good. The results came back all good. He was unable to cheap any milk or medication down so the doctors wanted to keep him until he was able to cheap stuff down. They said he had a stomach virus of some sort. We got out of the hospital yesterday. Devin is doing much better. Doctors said it was just something that is going around. We are happy that his heart is great and he is feeling better. Here is a of Devin and friends.



This is a picture off all the kids around during Halloween both waiting for a heart and received one. The hospital had a trick or treat trail. All the units had their table of goodies in the hallway. It was awesome. All the hospital employees were totally into it, and the kids looked like they were having a blast. There were lots of people and was really fun. Devin liked seeing everyone dressed up. When we got back to the Ronald McDonald house and they had a party but Devin was so tired and ready for bed. We eat some pizza and head for bed. Before bed Devin checked out his stash of goodies and walked around proudly with his trick or treat bag.

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.

On top Devin walking with Mom back at the Ronald McDonald House. On bottom Devin back in our room happy as can be.

A Couple of Days with Grandpa!

Hello! Here are some Picutes Grandpa has taken while visiting. Enjoy!

To the left is Devin Standing. He can stand on his own and walk along the table. He can also walk with his toy walk eveywhere too. Almost walkig by himself.

Below to the right is Devin on Grandpa's shoulders. Weeeeeee!!!
To the left is Devin cuddling with Mommy. He's mommy's little cuddle bug.

Above to the right is Devin playing with some food. devin still does not eat anything by mouth. He is feed through a tube in his stomach called a g-tube.

Below is Devin shopping with Grandpa. Which one will Devin choose.

IT'S BEEN AWHILE SINCE I'VE UPDATED EVERYONE BUT IT'S BEEN A BUSY COUPLE MONTHS. MICHELLE AND DEVIN ARE SETTLING IN DOWN IN PALO ALTO, CA. AND MYSELF AND THE KIDS ARE DOING OK IN PORTLAND. THE KIDS ARE ACTUALLY IN UTAH WITH THEIR BIOLOGICAL MOM FOR A COUPLE WEEKS WHICH IS GIVING ME A MUCH NEEDED BREAK. I HAVE MADE A FEW TRIPS DOWN TO CALIFORNIA ALREADY. AND HOPE TO BE ABLE TO CONTINUE TO GO DOWN EVERY FEW WEEKS. CINDY FROM OUR CHURCH HAS PUT TOGETHER WHAT IS TURNING OUT TO BE A HUGE BENEFIT FOR DEVIN ON AUGUST 23RD AT THE BOMBER RESTAURANT OFF MCLOUGHLIN BLVD FROM 6-9PM. OUR FAMILY HAS BEEN AMAZED AT THE COMMUNITY SUPPORT AND WISH TO THANK ALL THOSE WHO HAVE DONATED AND/OR PRAYED FOR DEVIN AND OUR FAMILY. DEVIN'S CONDITION HAS FOR THE MOST PART REMAINED THE SAME AND HE IS IN GOOD SPIRITS AND GROWING UP FAST. HE IS ABOUT TO WALK ON HIS OWN!

We like to thank Cindy Mcgill from our church for putting on a great benefit. Lot of people came out and supported Devin and we like to thank you as well.

BENEFIT AT THE BOMBER

The Move

To finalize the process of getting on to the heart transplant list there are blood test that still have to be done. Devin and Michelle (Mommy) will be going down to California for the last time on June 8th. Since Devin needs to be at least 2 to 3 hours away from the hospital while on the list, we will be staying at the Ronald McDonald House.
The doctor said it may take a few days, weeks, months or more. They said for 15months old babies it takes anywhere from 6 months to a year or more. All we can do is hope and pray that the time spent in California is short lived.
It’s hard to pray for a heart when you know that to get a heart another little life has to be taken. We could not image how it would feels to lose a child and no the less make a decision to donate their organs. That would be the toughest decision to make after such a big lost. To pray that a family find the strength to make the decision not just to save a life but see their child lives on and that their life was not taken in vain would be our pray.

O' Happy Day

We have wonderful news. After a long month of negotiating, Lucile Packard Children’s Hospital (at Stanford University) has accepted Devin into their heart transplant program. We honestly did not think it was going to happen and were looking at other hospitals. Before we went down to California, the insurance company informed us that Lucile Packard Children’s Hospital did not send a letter stating that they accept the $250,000 maximum. The insurance company needs the letter to authorize the heart transplant so that it will be covered. Lucile Packard Children’s Hospital could not accept the $250,000 maximum because it was not nearly enough. The insurance company could not pay for the hospital visit because of this. We used $4000 of the money we had fundraised to pay for the evaluation. We decided to pay out of pocket because we wanted to get Devin on the heart transplant list as soon as possible. When we got down there and talked to the finical department they told us that the $250,000 is not enough. We told them that we had a secondary insurance and asked if that would help. The problem with the secondary insurance was that Lucile Packard Children’s Hospital was not a hospital that they contract with. The hospital talked with the secondary insurance and they agreed to match the primary insurance ($2500, 000). We have $500,000 in coverage and Lucile Packard Children’s Hospital said that it still would not be enough. We were getting upset and very frustrated. Here we are double covered and we were being treated as if we had no health insurance at all. We told them that we have raised close to $50,000 and would that help. The hospital still said it would not be enough. We were confused, frustrated, angry, and sad all at the same time. Here Devin needs a heart transplant and he cannot get it because people are afraid that they will not get paid. We will do anything to save Devin’s life and if that means fundraising, than so be it. We talked to the doctor and he said that Devin needs to get on the hear transplant list within a couple of months or he will be too sick to get a transplant. We were devastated that he needs to get on the list and money was stopping him from get on it. As we left on the plane to go home, we felt that the trip was a waste of time. We got in touch with the insurance companies and the hospital to see what we could do. There was nothing really it was all between them. When we saw his Cardiologist here in Oregon we asked them if we could after other hospitals because we thought that Lucile Packard Children’s Hospital was out of the picture. Lucile Packard Children’s Hospital even told us to start looking at other hospitals. We stayed in touch with Lucile Packard Children’s Hospital they were working hard to get it to work. They wanted to help us it was just the upper management who were stopping them. By the grace of God we received word yesterday that the insurance companies and the Lucile Packard Children’s Hospital have come to agreement and are authorized to go through with the heart transplant. We never thought it was going to work out, but God has a plan. They said Devin will be on the heart transplant list next week sometime. The doctor in California said he wanted to see Devin and finish the blood work for the evaluation. Since the hospital wants Devin within 2 to 3 hours away from the hospital, Devin and Mom will have to move to California. We will are working on getting into the Ronald McDonald house. Dad and Devin’s three siblings will have to stay in Oregon. Dad has to work to keep the insurance and the kids have school. It is going to be trying time for us but we have faith that everything will work out. We are still in need to pay for the heart transplant. Lucile Packard Children’s Hospital told us that it might cost up to 2 million dollars. We know that is a far fetch number to so we are still fundraising to get as much money as we can get. We are setting a goal of $250,000. We are looking for any help involving donation, getting Devin’s story out there or whatever anyone can do. We thank everyone for supporting us. We truly appreciate it.

News from Stanford!

We finally heard from Stanford on Tuesday 4/4/06. They said everything looked good on paper. There were some concerns that Stanford had that made us wonder if Devin would get a transplant. Stanford was concern that the sternum infection might affect the healing process after surgery. They thought it would not heal because the infection had damaged the sternum, so they would not be able to do the transplant. The other concern was that Devin's blood clotting ability. They were wondering if he natural clots more or if it was from the catheters he had. After doing blood tests and a CT scan Stanford has agreed to evaluate Devin, meaning that the sternum and clotting if fine. We will be going down to Stanford April 20th. They said it will take a full day to two. They want to run echo, chest x-ray, and blood test themselves. They want to see Devin in person instead on paper to give them a better understanding of what is going on with him. They also wanted to talk to us (his Parents) about the transplant process before, during and after. When we come back we should have a better understanding what will go on with a heart transplant and if he is going to be on the list. Other news is that Devin crawled for the first time on Sunday. We are all excited to see him progress so quickly. Below are pictures from his first birthday. Enjoy!














Above is Devin playing before the party started. Above is Devin with his cakes.















Above is Devin enjoying his cake. Hehe! Above is Devin just about to open presents.

Christmas Pictures

Here are some Devin's 1st Christmas pictures and more. Enjoy!














Above on the left is Devin eating his new teething toy on mommy's lap.
Above on the right is a family photo. Starting on left Dad, Masen, Rylie, M'Kenzi, Devin, and Mom.
Below is Devin opening one of many presents. Thank you Santa!





















Above on the left is Devin standing with mommy's help.

Above on the right is Devin being his normal smiling self. You wouldn't think he would be like this after everything he has gone through, but this is him everyday. Besides when he is teething.

Waiting Game

Currently we are waiting to hear from Stanford if they are willing to do the evaluation. Devin is doing as good as he can be. The doctor's say that he looks great for his condition. He is doing normal baby things such as: making spitting noises, sitting up by himself, drink out of his sippy cup, saying dada & mama, rolling everywhere, bouncing on the couch, and almost crawling. Here are new pictures of Devin enjoying 1st Halloween, and more.













Right is Devin getting dirty with his pumpkin.
On the left above is Devin and his finished pumpkin.





Right is Devin and his siblings dressed up for Halloween.








Left is Devin enjoying a wonderful fall day.
On the right below is Devin helping mommy give medicines.




Left is Devin playing with his toes on mom's lap and Dad in the background.

A Turn For The Worse

Although Devin looked well we began to see signs of his heart failure worsening. They were going up on several of his medications, he was getting tired easy and was uncomfortable a lot of the time. It all came to a head when Devin broke a fever one early morning in the beggining of November. We took him to his pediatrician first and they sent us back to Doernbecher Children's Hospital for a chest x-ray. We came home after the x-ray and waited to hear from the doctor's again.During this time Devin became completely unconsolable, he was screaming at the top of his little lungs and there was nothing we could do but wait. It took about a couple hours for them to get back to us. The doctor told us they thought he might have pneumonia and that he needed to go to the hospital. She told us she was going to speak to Devin's cardiologist at DCH and call us back. When she called back she said that an ambulance was on the way to pick him up. This is when we panicked. we ended up just driving to the hospital because it was quicker to drive. When we got there they checked him out initially by people who knew nothing about Devin and we felt like they were wondering why we were there. After about an hour Dr. Law the transplant specialist at OHSU came to look and was concerned and immediately made the decision to admit him. Once he was admitted they began looking for reasons why he was spiking fevers along with other symptoms. They began ruling out things and then did another ECHO. This showed that his arteries were swelling as well as his heart and it also showed that he had formed a clot in his heart which is a very bad sign of things to come. They immediately started him on blood thinners.

Devin Becerril

Devin's Story

Devin was born February 18, 2005. He appeared to be a healthy 7 lb 15 oz baby boy. The only early signs that something might be wrong were that he did not begin breathing on his own right away and we had an incident that he stopped breathing during his first night in the hospital. The nurses blew this off as nothing to worry about nevertheless we were concerned and opted to stay an additional day in the hospital. After going home we began living a normal life. Devin was surrounded by family including 2 older sisters and 1 older brother. Everything was wonderful. At his first check up with his pediatrician the doctor noticed that he had a little jaundice and asked us to come back in a week to check it again.
This is where things went terribly wrong. When we went back to the doctor she noticed that his hands and feet were a little blue so she called and spoke with a cardiologist at Doernbecher Children's Hospital (DCH). When she came back to the room she asked us to immediately go to DCH to have an Echocardiogram done. On our way to the hospital we were not to worried afterall we had him home for three weeks at this point and he was a very happy little boy. During his Echo we became worried. We did not understand what the colored pictures of blood flowing through his heart meant but the technician had changed his demeanor and kept looking and looking. He then got on the phone and asked the cardiologist if she was watching from the back, she was and within a minute she came into the room and said there was a problem and he needed to be in the hospital right away. She had me pick up Devin and waliked swiftly with us to the Neonatal Intensive Care Unit (NICU). She began explaining what was wrong although at this point we still did not understand what it all meant. They began hooking Devin up to all kinds of machines. We were terrified! A short time later a surgeon came in and told us that his main arteries going to the heart were switched which means that the blue unoxygenated blood was going to the body and the red oxygenated blood was recirculating in the heart. They told us that the hole between the left and right side of the heart had kept him alive until now but that it was closing and closing fast. They said they must perform two surgeries, one they would be doing that night to open the hole between the two sides of the heart back up and the second would be done the following day to fix the heart, called an arterial switch. We were freaking out! We were told that this was not an optional surgery he would die without it. They told us the major surgery would take about 4-5 hours, it took 8 hours and when they brought him into the Pediatric Intensive Care Unit (PICU) we were not prepared for what we saw. I became weak and was unable to stand, nothing I had seen or witnessed in my life compared to the pain I felt at that moment. He was hooked up to a heart lung machine, had tubes going in his chest, in his lungs and was plugged in to about 20 IV's. IT WAS HORRIFYING. As bad as this was it was not over shortly after the surgery they came and told us that there was another problem. They said he had an abnormal coronary artery so they had to replace it and when they did so it became kinked so they needed to go back and try to straighten it out although they said this would be extremely difficult because the coronary arteries are only about 1mm wide. They were unable to completely straighten it out and by then the damage had been done. Due to the lack of blood flow to the heart because of the kink in the coronary artery Devin had the equivalent of a massive heart attack and the end result was most of the left side of his heart died. What saved him was that he was very young and very strong. The doctor's told us that there was no text book to tell them whether Devin would survive or what further complications would come of this because there are so few cases like his. They told us that hopefully new tissue would grow around the dead heart tissue and take over but it would take time for them to know.Devin was hardly ever awake for about the next 4 weeks, sedated on multiple medications. Every once in awhile he would open his eyes. He looked so scared, within about a minute he would be back asleep. After about 2 weeks they removed the heart lung machine and closed his chest for the first time. He still had tubes going into his chest and lungs, tons of IV's and intibated but it was progress. One by one they began removing tubes and IV medications. Then came his first infection after trying to treat it with antibiotics they decided to open his chest back up to remove the infection. He began having kidney problems about this time and once the doctor's realized that diuretic medication was not going to be enough they started him on pertanel dialysis, which meant another surgery. He was gaining lots of fluid. It made him look really puffy in his head and one leg. The doctors found it odd and considered that he might have clots, since the fluid was only gathering in two area where he had IV's. They did ultrasounds on the areas where the IV's were located and confirmed that he had clots. By this time the IV that clotted in his neck had made it so no fluid could pass from his head and out his body. His head looked rather large and round. We did not realize how big it was until we looked at pictures from the week before. It was rather scary to see him like that. Than where the IV that clotted in his thigh made it so that fluid could not leave his leg and out the body. It made his leg three time bigger than it was. The doctors started him on blood thinners to dissolve the clots. They said it would take months for the clots to go away. On top of this the doctors were reasy to close his chest. Once the fluid started coming of they tried to close his chest several time with no success. After being on dialysis for two weeks he released enough fluid to stop the treatment and close his chest. On 4/6/05, almost a month after surgery, Devin was moved to the Neonatal Intensive Care Unit (NICU). This was a good sign. He no longer needed one nurse to take take care of him and only him. In the NICU one nurse would take care of several babies. This means that Devin did not need such intense care and that he was getting better. We were excited since that was another step closer to going home. At the NICU they said that Devin was strong enough to try to take him off the ventilator. It was not until 4/19/05 did he finally come off of the ventilator after many attempts. He did go on CPAP which just supplied a constant flow of oxygen through his nose. This was also a big step. Since the Ventilator breathed for he, now he was breath on his own with a little help with oxygen supply. We were so happy to see tube after tube leave his body. Now all that was left was the oxygen and feeding tube. The doctor decide that Devin was strong enough to try to feed from the bottle by the middle to end of May. He was able to take about 1/2 an ounce of milk, but we noticed he would vomit almost every time he finished eating. The doctors were concerned of his swallow and wanted him to get tested. They did a swallow test and found that his swallow was great it was the pooling in his throat that was making him vomit. The feeding tube was making the milk to stop half way down and pool. The more Devin drank the milk would just come back out. The doctors decide at this point that he needed a G-tube. The G-tube would go from his stomach and out the abdomens. This would enable Devin to drink easier from the bottle. Once the G-tube was placed on 5/31/05 they told us that he would be able to come home after a couple days of healing. We were so excited finally an end. Than the unexpected happen. He developed an infection in his wound on his chest. We thought goes figure. We have one foot out the door and something else happens. The surgoens had to open the chest wound about 1 inch long and 3 cm deep. The wound had to heal from the inside out. On top of learning to giving 13 meds and giving milk through his G-tube we had to pack his wound. Our first thought was ," WE HAD TO DO WHAT!" We were scared to pack Devin's wound with gaze, but we learned to do it for Devin. If that is what it takes to get him better and home than that is what we had to do. After his antibiotic treatment the doctors said Devin was free to go home on 6/9/05. We were happy but also nervous. The happiness over took the nervousness and we took him home. We had him home for about a week this time. We were packing his wound several times a day, he would scream every time. It was heart wrenching. Our neighbors would pound on the wall because he was screaming so loud. Then he got a fever and we went back to the hospital. They brought in all kinds of people to look at him and after about a week in the hospital they figured out he had a bone infection in his sternum which is why the infection was coming back. See they had just been treating him for a surface infection each time and this was much deeper. So theytook him back to the operating room and opened his chest again this time it was 3 inches long, 1 inch wide and all the way to the bone. They had to put a PICC line in but this was the beginning of a new problem. Since Devin was so small and had had so many IV's, PICC's, and Central Line's they couldn't find anymore viens to use. After several people tried to place a PICC they told us it was to dangerous and noone wanted to try again after a couple days a nurse decided to try again and it worked so back on the antibiotics he went. This would be a six week dose to get it out of the bone.They decided to try a new healing therapy on his wound since it was having such a hard time healing called a Wound Vac at first we welcomed this. His wound appeared to be healing faster but it creates problems of it's own. Devin broke out in a rash from the wound vac that was very painful to him. They let us go home again but it was very short lived the PICC line clogged twice and the home health nurses thought it was to dangerous to try to clear it again so back to hospital we went. No one would even think about trying to place another pick until the surgeons came and said that they would try in the operating room. It took a few hours but they got one in his neck. Nobody was comfortable with us going home with a line in his neck so we waited. We thought we would be there the entire six weeks but the nurse who got a pick in the last time was back at work and she was able to place another pick. They also decided to stop the wound vac treatment and told us that we could come home but we would have to pack his chest again. This was better than spending another month in the hospital. So we did what we had to do. It was a rough month or so until the wound began to close dramatically. By around August his wound was about 99% closed and things began to go better for awhile. We were getting promising signs of a possible recovery.