STOLLERY CHILDREN'S FOUNDATION SNOWFLAKE GALA

Last night was the annual Stollery children's Foundation snowflake Gala. Our family was invited to attend....we gladly accepted the invitation. We have done some speaking for them at other fund-raising events so this was there way of saying thank-you. We really enjoyed ourselves. They transformed the Shaw conference centre into a winter wonderland......complete with ballerinas and the nutcracker. As you entered you were walking through a forest of trees covered in lights...absolutely magical. It was beautiful. They had a kids area that had crafts, video games, magic show, air hockey, Foosball...the list goes on. The kids even had their own bar area complete with blue raspberry drinks....no grown-ups allowed. We all had a great time...the food was amazing.....the appetizers for the kids was pizza pops, jello, fruit and raw veggies and dip.....so amazing how kid friendly everything was. Their dessert was Dairy-queen ice cream. We all enjoyed a turkey dinner together....we had to carve it ourselves.

The boys looked so handsome in heir tuxes and the girls looked beautiful in their dresses. We had a fabulous time, but all too soon the evening came to an end.

This is a cause that we support and are forever grateful to the Stollery for what they do and what they have done for Sam. He is a healthy, happy, 9 year old boy because of the miracles that they can do. God has blessed us in our own community with such a fantastic hospital that is right in our own back-yard. We hope that no child ever has to need it like Sam did, but if you ever do, you will be very grateful that it is there.

SAM'S STORY

Rod and I spoke at a fundraising event for the Stollery Children's Hospital Foundation a few months ago. I made a video about Sam. It captures some highlights of Sam's story. Here is a link of the video.
http://video.yahoo.com/watch/6085514/15812474

SAM WILL SLEEP ANYWHERE!!!!

Sam will sleep in any position at any time and any place. I wish it was that easy for me to sleep!

NO MORE CHEST TUBE

Kyle, Taylor, Jesse and Sam.....holding him for the first time.

My sister Jody holding Sam for the first time....he was still on oxygen at this point

Sam was free from tubes except his IV...we went for a walk around the hospital...it was very exciting to leave the PICU for the first time.

I was so done with hospitals and needles IV's etc. I just wanted Sam out of there. I was so grateful to the Stollery and what they had done for Sam.....without all of them Sam would not be here. God creates miracles through other people...the gift of being a surgeon and having the amazing ability to operate on such tiny little hearts is truely a gift from God. I had reached my limit though and I was done. I was boldly seeking a miracle from God. I know that the path ahead of us did not look good, but I believed so strongly that Sam was going to be able to leave the hospital very soon. I even had a date in mind...now how bold is that. Here is the list of things that needed to happen in order for us to be able to leave the hospital. Sam's chest tube needed to be out, his lungs healed, feeding on his own and gaining weight...he had lost weight everyday since he arrived....his IV medications for his blood infection needed to be done, breathing completely on his own with no assistance....so no extra oxygen. This was quite a list of things to accomplish...considering they had told me that he had to have the chest tube in for approx 6 weeks...it was pretty unlikely that he was going home anytime soon. I believed so strongly that he was going to be going home soon.....His chest tube went in on a thursday.....I boldly prayed that we would be able to go home the following friday....how unrealistic is that. I honestly believed so strongly that I was surprised when I walked into the hospital to find Sam still had his chest tube in. The staff though, was surprised to find that Sam was no longer draining fluid from his lungs....they thought that they had to adjust his tube and that it had somehow missed the fluid. They tried for 2 days to find fluid and when they couldn't the tube came out on tuesday. That's 5 days.....not 6 weeks!!! Sam had a lot to accomplish if we were going to meet the goal of going home by Friday......I got to work and so did sam. While we were trying accomplish some things to be able to bring him home...we were able to let his brothers hold him for the first time...no more tubes....this was a big deal and we were so excited to bring the boys to the hospital so they could cuddle their brother. The biggest hurdle was the IV meds. Sam was no longer on any central lines or pic lines because the infectious disease doctors said it was way to risky. He was getting his medications by IV which only staff could do...his IV's often came out and he was poked and prodded so much that he began to cry constantly. This was not good because he was burning all of his calories and not gaining weight. There was still a lot to do before he would be released, but for now we were enjoying Sam without all of the tubes hanging from him. I wasn't focused on that I was just so glad that God had answered what seemed to me to be the biggest hurdle...we would tackle the rest another day.

WHEN ALL SEEMS LOST....GOD IS STILL THERE

Sam is 3 1/2 weeks old. He is getting stronger and he was taken off of the breathing machine, he was just on oxygen. His chest was healing very nicely...still had the chest tube and the IV meds, but he is looking really good.

The following weeks after Sam's surgery were very hard....full of post-op complications and I had hit rock bottom emotionally. I think the staff even wrote about it in Sam's reports.....that's how bad it was. I had a hard time accepting all of Sam's complications. I knew they were real, but there was no way that I could accept the fact that Sam was going to be in the hospital for another 12 weeks.....I couldn't do it. Rod and I watched other families with sick babies try and cope as best they could.....until you are in this situation it really is just somebody Else's life....it is not real. I was longing to hold Sam and just be his mom and watch him grow and smile and hold my finger. All of those simple little things that we take for granted were just not possible for us at that moment. After we had heard all of the bad news I went home and sat in Sam's nursery and stared at the empty crib and just cried.

Sam was getting stronger, his heart was healing, he was on IV meds for the infection and he had a chest tube that was draining fluid from around his lungs. They were beginning to wean him off of some of the medication that he was on and when he was 3 and half weeks old they took him off of the breathing machine. He was just on oxygen. All of this was good news. I was even able to start to hold him again.....all of which should have been enough for me, but it wasn't.....with the chest tube still in and draining off fluid.....they told us to prepare for another 12 weeks of being in the hospital. We had 3 other boys at home who were living a very different life. Rod had to go back to work....I was thankful that CBC gave Rod quite a bit of time off after Sam was born. We tried to come up with a plan that worked for us....so between visits to the hospital and trying to be parents at home, it all became very exhausting. I could tell it was starting to affect them...especially Kyle. I had sent my mom back home to Saskatchewan because I wanted her to be able to come back when they released Sam from the hospital....whenever that would be was anybody's guess. It was at this point that I went home one night after being at the hospital and was totally exhausted, but very much trusting that God was going to hear my prayer......I just wanted Sam to come home. There was one nurse...actually she was more then a nurse, but I forget her title, anyway we didn't always see eye-to-eye. She was always the one who delivered the bad news to me and she was very cold about it when she did....I know it was her job, but she always gave worse case scenario and they was never any room for hope or the possibility of a miracle. I really felt strongly that God was going to answer my prayer. I didn't know how because there was so many obstacles that Sam had to overcome that the mountain seemed impossible to climb.......in the days to come it would be this very nurse that gave me such a hard time that God would use to make a miracle happen......when all seems lost God is still there!!!

PROGRESS AND SETBACKS

The blood cultures came back positive for a blood infection which meant that the doctor's had to work very hard on getting all of Sam's central lines removed. They were the cause of the infection.....the problem is that Sam was on so much medication that it was imposible to remove them. The solution was to remove the central lines and put in pic lines.....the infectious disease doctor's were not satisfied with this, but it was the best solution for now. Sam's lungs had collasped because fluid was forming around his lungs. It is a condition known as Cholothorax www.emedicine.com/med/topic381.htm). When you metabolize food, your body sends triglycerides (fatty acids) to your lymphatic system by way of a thoracic duct. Sometimes during surgery that duct becomes torn or damaged and leaks the fluid into the thoracic cavity. Sam's duct was knicked during surgery and so this is why he was struggling to breath....fluid was building up around his lungs because of his intolerance to fat(milk). This was not life threatening and treatable, but a very huge setback. Sam no longer could be fed milk of any kind. He was put on a special formula and was being fed through a feeding tube in his nose. He had a chest tube put it and I remember showing up in the morning to see him with new tubes hanging out of his body. The doctors's told us that it would be weeks before the fluid around his lungs was gone and then it would be weeks before he could be weened back onto milk products and learn how to suck out of a bottle. The medication for Sam's infection was so strong that it could only be given by intravenous. He would have to be on it for at least 3-4 weeks.....another setback. I was thankful that Sam was alive and he was getting better.....this was good news. However with all of the complications that Sam experienced it was looking like Sam was going to be in the hospital for another 12 weeks.....this was devastating news to me. I will never forget the night they informed me of all of this. I lost it. I really needed a miracle....I know there had been so many already, but I really felt lost and broken at this point. I was struggling to keep it altogether...each day that passed was harder then the one before. The infectious disease doctor's kept insisting on removing Sam's pic lines and central lines and his chest tube was filling up bags with fluid from his lungs. This all seemed too much to tolerate, but somewhere inside of me was a strength that God could only provide. Sam's heart function was doing fabulous and his breathing was coming along great. He was still on the breathing machines, but everyday they were lowering the amount of oxygen that was coming from the machine.
We were thankful for the positive things....good heart function and Sam was begining to breath on his own....the setbacks....well we were going to get through this....Sam was getting stronger and for now that was enough.

48 HOURS LATER....

All of Sam's doctors told us that the first 48 hours after surgery were the most crucial. If complications were going to happen it will be within that time frame. Sam's surgery was on September 1st so on September 3rd we decided that Sam's brothers could come for a visit since Sam had done so well. The doctors were very pleased with his progress and everything was moving along great. We thought we had made it through the worst and it was smooth sailing from this point forward. It was a sunday morning......Rod took the boys to church and I had called the hospital to check on Sam. They told me he was doing great and that visitors would be fine. Rod was going to bring the boys over after church. When I arrived at the hospital I was not prepared at all for what was happening. I walked in to a nightmare.....people were hovered around Sam.....a couple of doctors, his nurse, the respitory therapist and they were wheeling in an Echo machine. I was terrified and nobody was talking to me...they were all just working on Sam. One of the nurses grabbed me a chair and told me to sit and they would tell me what was going on when they had a moment. His blood pressure was through the roof his heart rate was way over 200 beats and he had a temperature. This was not a good day. I quickly called Rod and told him not to bring the boys and that he needed to get to the hospital quick. They were concerned he may go into heart failure and then they would have to crack open his chest again. I just sat there all alone frightened beyond words.....the doctors and nurses all tried to reassure me that everything was going to be alright, but how could they know that...they couldn't know that.....they weren't God. I was struggling and was having a hard time trusting that God knew what he was doing......people who are used to being in control often struggle in gving it up. I knew I had to because I was driving myself crazy with worry and making myself sick....not a good place to be.
Sam was lying there so helpless and he was fighting for his life.....this was so hard to watch. I just wanted him to not feel any pain and to be well. After a very long day and I mean long......it was hours before they had him stablized....and even then it wasn't what they would have liked, but he was out of immediate danger....they discovered a few things. He had a collasped lung which caused all sorts of things to happen inside of his tiny body and he had a blood infection which was life threatening and very scary. They had started him on several IV antibiotics becasue they were not 100% sure what kind of an infection he had.
As the hours went by Sam continued to stablize a little bit, but he was not out of the woods and it would be days before we saw any kind of dramatic improvement. Rod did go and get the boys for a quick visit as they were so disappointed that they didn't get to see him earlier....it's the moments that make lasting impressions and memories...I am glad they came it made me feel better to see them altogether.
We went home at around 10:30 p.m. that night. I was exhausted, but I knew I wouldn't sleep. I got up 3 times in the night and called the hospital for an update....each time he was fine and they told me to go to sleep. I never did......