Yesterday was a big day for Cory. When I arrived in the morning, I was told that Cory would likely be going to the ward that day. Wow! That’s a huge step! The doctors came and did their rounds. I have been so used to hearing “critical but stable” that it was a pleasant surprise when they didn’t really have too much to say about him.
Cory has been doing so much better since his breathing tube was removed. He was weaned off of his sedation yesterday, and he was moving his limbs around like he was trying to wake himself up. Since Cory had been doing so much better they pulled his catheter, the IV in his right arm, and the ART line in his left arm. They had an oxygen mask on him, but that was replaced with nose prongs so he would be more comfortable. So the only thing left poking my poor little guy is the central line in his groin. This is where he gets all his antibiotics. They hope to pull that out in a day or two and replace it with a PIC line.
Yesterday afternoon finally rolled around and we were moved up to the ward. It was a little (a lot) frustrating having to get used to the new staff, the new nurses, and the new doctors. The day was a little less stressful as we had a couple of visitors. Donna, Lee, and Molly all came for a visit. I think it did Cory a lot of good to see his sister. I don’t think Molly really knew what to make of her little brother in that strange bed with his monitors. But she sang to him and shared toys with him. She thinks it will be great when we finally get him back home! Cory also got a visit from Aunty Allison and Aunty Sonia. They all agreed that it was good to see Cory looking so much better.
The last time Cory was on the ward, either Lee or I had to stay with him all the time. It is just safer to stay with your child since the wards are a busier place than the PICU. But this time Cory is in a monitored bed. That means that there is a nurse outside his door dedicated to looking after him and just one other patient. That also means that Lee and I don’t have to spend the nights trying to sleep on the fold out bed (if you can actually call it a bed) that they provide in the rooms. We know that since Cory is monitored 24/7 that it is safe to leave him in his nurse’s capable hands. And we are so thankful for that because it is sooooo stressful having Cory back in the hospital. At least we both get to come home to our own bed and try to get a good night’s rest.
Today was a very stressful day for me. I’m not really sure why, but it was. Although I know Cory is well taken care of, it is still really hard to leave the safety and the comfort level that we had known in the PICU. But I guess as with all transitions, I will get used to these new surroundings and feel just as comfortable as I was in PICU. The doctors and nurses are great, so tomorrow should be a better day. One good thing that happened today was that I learned that Cory is currently taking three different antibiotics. Two of those should be finished their dose in the next five or six days. The other one will continue for about six weeks. But the good news is that Cory may get to come home if he is stable after the first two antibiotics are finished. Yay! That is such good news because we thought we were going to be stuck in the hospital until near the end of October. We just have to find a way to get Cory’s antibiotics administered at home. The doctors are looking into that for us now, so hopefully everything will work out and Cory will be home sooner than we thought.
Cory was having a bit of a rough day today, but the team of doctors and nurses and pharmacists, etc. finally got his orders together and he now has an effective weaning plan for his pain medications. Cory is on Morphine and will be weaned off of it over the weekend. He still seems to be in a bit of discomfort, and he was a quite agitated earlier today. But since the new weaning schedule was started he seems to be doing better. Hopefully his night tonight will be more comfortable than last night.
Lee just called from the hospital to report that Cory has been sleeping soundly and peacefully for most of the time that Lee’s been there. That makes me feel quite certain that the new weaning regime is working properly and Cory will get the rest he so desperately needs.
For as far back as I can remember my favourite colour has always been green. But today I got a new favourite colour. Brown. When Cory opened up those big brown eyes of his and looked at me and stared at me and loved me back, I knew that everything was going to be all right. I felt such overwhelming joy and hope and love and relief that I couldn’t help but cry. And smile. I
smiled a lot! And even though Cory had a bit of a rough day I managed to get a smile and a small laugh out of him. That really made my day.
I know now that my little fighter will make it through this ordeal just as well as he’s made it through all the others he’s been through in his short life. He is the toughest little kid I know.
Friday, September 25, 2009
Wednesday, September 23, 2009
Did I Hear You Correcly?
The last few days have been exhausting for Lee and me. But they have been even more exhausting for Cory who has been in his hospital bed trying his best to fight the bacteria that is running through his body. He has a little crater (as I like to call it) at the very top of his surgery incision which is constantly draining fluid. They tell me that it is some of the infection working its way out. They tell me that it is good to see all this very yucky stuff oozing out of my son. As Shrek would say… “Better an outy than an inny!”
They are treating Cory as if the bacteria is in his bones and heart. Since it is too soon after his surgery date, there is no conclusive way to tell if the bacteria is actually in his bones. Better safe than sorry. This means that Cory will have to be on IV antibiotics for 4 to 6 weeks. It is too soon to know if we will have to remain in the hospital during the treatments, or if we will be able to take him home and have a nurse come to the house to administer the drugs. I’m really hoping he’ll be able to come home.
Cory has had a rough couple of days. The Respiratory Therapists had Cory pretty much breathing on his own, with the ventilator (breathing tube) only helping him if he wasn’t getting enough volume of air in his lungs. This sounds good, but it was really difficult for Cory to cough and expel the mucous from his lungs with the tube stuck down his throat. The nurses had to help Cory by suctioning him. They would insert a small tube down his breathing tube to suction up all the bad stuff. But most of the times when they did this, Cory would have an “episode”. His sats, as well as his heart rate at times, would drop dangerously low. Cory would turn blue and gag and a whole team of people would have to come running in to help Cory breathe properly again. The first few times he had these episodes his sats would just drop really low. But after a few days he started the turning blue thing. The first time Lee and I saw this we turned white. I have never before seen Cory in that state. Watching the monitor, hoping his sats and heart rate would return to normal, and praying that the doctors and nurses knew what they were doing was pure torture. It brought us to our knees more than a few times.
Every morning I would go to the hospital for doctors’ rounds. And every morning I was told the same thing. “He is critical but stable.” I had a couple of bad days. On Sunday morning I went in to see Cory. I knew that I wouldn’t see any changes in him, but I really really wanted to. When I walked into his room and saw that he was the same as the day before my heart sank. I cried and cried. Monday was even a worse day as he had a bad experience when he was getting x-rayed. He was not handled as gently as he should have been and as a result had a pretty bad episode. The x-ray tech was lucky that there were other people around as I’m not sure she would have made it out of Cory’s room with her arms still intact if we had been alone. If you thought I was a Momma Bear during the last hospital stay, this time I became a big ole mean Grizzly Momma Bear. It took me over an hour and a half to calm down after that incident.
Day after day Cory was getting clinically better, but still no changes on the outside. He was a little less puffy in his face, and moving his limbs a little bit, but I wanted more. Yesterday (Tuesday) I was told that Cory’s breathing tube would hopefully be removed the next day. I was soooo excited! I knew that my little fighter would get much better much more quickly once he was extubated. All day long I would sit with Cory, singing to him, telling him stories, and watching “Days or Our Lives” if we got the chance. (Yes, Cory is a huge “Days” fan!) Then Lee would come in the late afternoon and sit with Cory while I went home to play with Molly. Lee’s Mom is staying with us and helping us out immensely with Molly. I’m not sure what we would be doing without her here. Thank you Donna!
Today Cory finally had his breathing tube removed. The removal went splendidly and everyone was thrilled with how well Cory was doing afterwards. He is now totally breathing on his own, with a little bit of oxygen to help him out. He is on about the same amount of oxygen that he was on at home. That is really good! He looks better. He looks pinker. He has a really sore throat right now, but that will pass in a couple of days. Hopefully tomorrow we will be able to try bottle feeding him instead of having him eat through the feeding tube inserted in his nose. I think it will be smooth sailing from this point on. Cory always does so much better with each tube or IV or line that they take out of or off of his body. And today I finally got to hold him and cuddle with him again. It’s been almost a week and it felt so good to have my baby in my arms again. I think he liked it too.
Every night before I go to bed I call the PICU and talk to Cory’s nurse to see how Cory is doing. Every night I pray that God will help my son get better. Most nights I hear that Cory has had a couple of (one night he had five) “episodes”. Most nights I have to hear about how my son turned blue and that his sats went down to less than 30. Most nights I pray that Cory will make it through the night. Tonight when I called I wasn’t sure if I heard his nurse correctly. She told me that Cory was having a fantastic night and that he was sleeping soundly. I asked her to clarify. “You mean he didn’t have any episodes? You mean he hasn’t turned blue? You mean he really had a good night?” The nurse chuckled and assured me that Cory was in fact having a great night. I think tonight I may actually have a great night too.
They are treating Cory as if the bacteria is in his bones and heart. Since it is too soon after his surgery date, there is no conclusive way to tell if the bacteria is actually in his bones. Better safe than sorry. This means that Cory will have to be on IV antibiotics for 4 to 6 weeks. It is too soon to know if we will have to remain in the hospital during the treatments, or if we will be able to take him home and have a nurse come to the house to administer the drugs. I’m really hoping he’ll be able to come home.
Cory has had a rough couple of days. The Respiratory Therapists had Cory pretty much breathing on his own, with the ventilator (breathing tube) only helping him if he wasn’t getting enough volume of air in his lungs. This sounds good, but it was really difficult for Cory to cough and expel the mucous from his lungs with the tube stuck down his throat. The nurses had to help Cory by suctioning him. They would insert a small tube down his breathing tube to suction up all the bad stuff. But most of the times when they did this, Cory would have an “episode”. His sats, as well as his heart rate at times, would drop dangerously low. Cory would turn blue and gag and a whole team of people would have to come running in to help Cory breathe properly again. The first few times he had these episodes his sats would just drop really low. But after a few days he started the turning blue thing. The first time Lee and I saw this we turned white. I have never before seen Cory in that state. Watching the monitor, hoping his sats and heart rate would return to normal, and praying that the doctors and nurses knew what they were doing was pure torture. It brought us to our knees more than a few times.
Every morning I would go to the hospital for doctors’ rounds. And every morning I was told the same thing. “He is critical but stable.” I had a couple of bad days. On Sunday morning I went in to see Cory. I knew that I wouldn’t see any changes in him, but I really really wanted to. When I walked into his room and saw that he was the same as the day before my heart sank. I cried and cried. Monday was even a worse day as he had a bad experience when he was getting x-rayed. He was not handled as gently as he should have been and as a result had a pretty bad episode. The x-ray tech was lucky that there were other people around as I’m not sure she would have made it out of Cory’s room with her arms still intact if we had been alone. If you thought I was a Momma Bear during the last hospital stay, this time I became a big ole mean Grizzly Momma Bear. It took me over an hour and a half to calm down after that incident.
Day after day Cory was getting clinically better, but still no changes on the outside. He was a little less puffy in his face, and moving his limbs a little bit, but I wanted more. Yesterday (Tuesday) I was told that Cory’s breathing tube would hopefully be removed the next day. I was soooo excited! I knew that my little fighter would get much better much more quickly once he was extubated. All day long I would sit with Cory, singing to him, telling him stories, and watching “Days or Our Lives” if we got the chance. (Yes, Cory is a huge “Days” fan!) Then Lee would come in the late afternoon and sit with Cory while I went home to play with Molly. Lee’s Mom is staying with us and helping us out immensely with Molly. I’m not sure what we would be doing without her here. Thank you Donna!
Today Cory finally had his breathing tube removed. The removal went splendidly and everyone was thrilled with how well Cory was doing afterwards. He is now totally breathing on his own, with a little bit of oxygen to help him out. He is on about the same amount of oxygen that he was on at home. That is really good! He looks better. He looks pinker. He has a really sore throat right now, but that will pass in a couple of days. Hopefully tomorrow we will be able to try bottle feeding him instead of having him eat through the feeding tube inserted in his nose. I think it will be smooth sailing from this point on. Cory always does so much better with each tube or IV or line that they take out of or off of his body. And today I finally got to hold him and cuddle with him again. It’s been almost a week and it felt so good to have my baby in my arms again. I think he liked it too.
Every night before I go to bed I call the PICU and talk to Cory’s nurse to see how Cory is doing. Every night I pray that God will help my son get better. Most nights I hear that Cory has had a couple of (one night he had five) “episodes”. Most nights I have to hear about how my son turned blue and that his sats went down to less than 30. Most nights I pray that Cory will make it through the night. Tonight when I called I wasn’t sure if I heard his nurse correctly. She told me that Cory was having a fantastic night and that he was sleeping soundly. I asked her to clarify. “You mean he didn’t have any episodes? You mean he hasn’t turned blue? You mean he really had a good night?” The nurse chuckled and assured me that Cory was in fact having a great night. I think tonight I may actually have a great night too.
Saturday, September 19, 2009
It's Just Not Fair
On Friday morning I was looking at my little baby boy. He was in an induced paralysis and had spent the night before fighting for his life. “It’s just not fair” I thought to myself. “How did we get here?”
How did we get here? Good question. Let’s go back a few days and I’ll update you on everything that has happened to date.
Back in Edmonton last Monday (Sept. 7th) Cory’s chest tube was removed. This made him a whole lot more comfortable and he became such a happy little baby again. It was so easy to cuddle with him and play with him. We were able to put him on portable oxygen and take him for walks through the hospital. He loved going for walks and getting a change of scenery. We were told that Cory would likely be discharged on Tuesday since he was recovering so well. All of his tests were coming back great and you would never know that he had open heart surgery only three days before. Cory hated when the doctors and nurses came into the room. He would get really cranky and upset, but as soon as they left he was a totally different baby… happy and cooing and playing with Daddy and Mommy.
When I arrived at the hospital on Tuesday morning I was told that Cory didn’t have a good night. He was very agitated and didn’t get a lot of sleep. I also noticed that Cory wasn’t in his crib. Knowing Cory, I thought that maybe he had finally had enough and discharged himself. The nurse, however, informed me that Cory was getting his Cardiac Echo done because he was getting discharged that morning. They just had to make sure that his heart was functioning properly before they could release him. I was so excited! And so proud of my little guy! We got back from the Echo and the doctors came to do their rounds. It was a different set of doctors than we had been seeing over the weekend. Everything was going well, the doctors and nurses were reporting how remarkably Cory had recovered after surgery, and I was just waiting for the doctor to give us our walking papers. Instead, the doctor said that since Cory was still on oxygen he had to stay in the hospital until the end of the week. My happy, smiling face suddenly was not so happy and smiling. I looked at the doctor and informed him that we were actually supposed to be discharged today (according to the weekend doctors and Cory’s Edmonton Cardiologist). This doctor told me that sometimes on a shift change doctors have different opinions and that it was his opinion that Cory should stay. He said Cory was perfectly fine, the only problem was that Cory was on oxygen. I was sooooo angry. He told me to be patient and that we should be able to go home by Friday or Saturday. Now… anyone who knows me knows that I don’t really know the meaning of the word patient. Especially if all the other doctors told me that we’d be going home today.
This doctor came back later in the day and finally told me that Cory would be discharged on Wednesday. Yay! I was once again very happy. I was looking forward to getting home and seeing Molly, who we had left in Winnipeg with my parents. I also thought that it would do Cory good to get home and be surrounded by all his toys and people who love him instead of doctors and nurses who poke and prod him all the time. It would be much less stressful on the little guy.
So we flew home on Wednesday afternoon. On Thursday morning we went to the Heart Centre in Winnipeg so Cory could be checked out on his home turf. Everything was looking good and Cory was given the thumbs up.
Everything was going really great. Except for the “zipper” down Cory’s chest, you would never know he just had surgery. He was happy and playing and just the picture of a healthy kid.
On Sunday (Sept. 13th), I noticed that Cory wasn’t looking as pink as he was in the previous days. I met his Cardiologist at Children’s Emergency so he could examine Cory. His x-rays and Echo all looked good, but we had to put him back on oxygen. No big deal. He pinked up again and was once again as happy as a clam.
The next few days were going great. Molly and Cory were playing nicely together. Cory got excited when he got to go outside for some fresh air. And he especially loved to pet the dog. On Tuesday we headed over to the Heart Centre so we could try to wean him off of his oxygen. The Cardiologist and the nurse were both so pleased at how well Cory was recovering. We decided to reduce the amount of oxygen he was getting and go back to the Heart Centre on Friday to decide if we could discontinue the oxygen for good. That was the plan.
On Thursday (Sept. 17th) I noticed that Cory was not quite himself. I thought that maybe since he hadn’t been sleeping so well over the past couple of nights (because of the oxygen tube up his nose) that maybe it was just catching up to him. As the day went on I noticed that he wasn’t eating properly. And he wasn’t peeing properly either. And he wasn’t smiling at anything. Cory always smiles, so I knew that something was definitely wrong. We headed back to the hospital and the Heart Centre advised us to head straight to Emergency.
We were admitted right away and put in the Resuscitation Room. They increased Cory’s oxygen and things started to look a little better. They thought that maybe Cory was dehydrated and that was causing his sats to drop. They pumped him full of fluids and seemed to be happy with the results. The plan was to send Cory up to a ward over night for observation, then go home the next day. I went home to get an over night bag because I was going to stay in the hospital with Cory. I dropped Molly off at my parent’s house and finally made it back to the hospital where Lee and Cory were waiting for me.
Once I got back to the ER, Lee told me that Cory’s temperature had risen to 39.5c (103.1f) - up from 37c (98.6f) when he was admitted. I also noticed that the there was stuff oozing out of Cory’s incision where a small scab had recently fallen off. And his heart rate had accelerated to over 200 beats per minute. Nobody seemed too concerned about this and it was all chalked up to dehydration. Hmmmm…..
We were finally ready to move up to the ward. I carried Cory as the nurse accompanied us up to the fourth floor. On the way up to the fourth floor, Cory’s monitors started doing weird things. The nurse was a little stumped. Once we got to the ward (less than five minutes after leaving the ER) I set Cory on the bed. I was really concerned when I noticed that Cory’s whole body had gotten mottled. He was puffy all over and his heart was racing. His sats were dropping and Cory was crashing. Doctors and nurses came running into the room and hands were flying everywhere. Lee and I were standing in the corner watching all of this and couldn’t believe what was going on. Neither of us could understand how this could happen if Cory was just dehydrated. The respiratory therapist was bagging Cory to try to help him to breath. He put a mask over Cory’s mouth and nose and started pumping air into his lungs. I will never forget the look of terror in Cory’s eyes. I felt so helpless. The doctor told me to go stand by Cory and hold his hand to try to calm him. It didn’t help. Cory was going into shock and the doctors were doing everything they could to try to get him stabilized. As I was shuffled back to the corner, I counted 11 doctors and nurses working on Cory at one point. I can’t tell you how scary it is to see that many people trying to save your baby.
Once Cory was stabilized enough, he was moved to the PICU. Lee and I were to remain seated in the waiting room until they called for us. It was now about 9:30 at night and we were exhausted. We waited and waited and waited some more. Our Cardiologist finally came out and told us what was going on with Cory. They were trying to get a central line into him, as well as some other IV’s and tubes. They had to put a breathing tube in and were trying to get Cory to respond to medications to lower his heart rate and increase his blood pressure. We were told they were having a difficult time inserting the lines since Cory’s blood pressure was so low they couldn’t find a pulse or any veins.
We were told that Cory likely had an infection due to the surgery. We were told that the likely hood of infection after surgery was about 20% and unfortunately, Cory had the bad luck of being in that 20%. It was just dumb luck that it happened to Cory. We were told that nothing we did or didn’t do had caused this to happen. We were also told that we saved Cory’s life by getting him to the hospital when we did. I hope that those are words that you never have to hear from your doctor about your child. I knew that Cory was having trouble, but until she said those words I don’t think I really knew how much trouble he was in.
Lee and I continued to wait. Finally at about midnight we were allowed in to see our son. He was puffy, and full of wires and tubes and medications. They had given him a drug to make him forget what was happening to him. They had also given him a drug to paralyze him. Seeing him laying in that bed was far worse than seeing him after either of his surgeries. Several different doctors came and went. The Cardiologist, Infectious Diseases, Intensivists… We were bombarded with so much information and it was so overwhelming. We were told that Cory had a major internal bacterial infection. They were pumping him full of antibiotics and were trying to get his temperature down, which had now risen to 40c (104.0f). I asked the doctors on a scale of 1 to 10 (with 1 being minor and 10 being life threatening) where Cory was sitting. I like the 1 to 10 scale because it really puts thing into perspective. They told us that three hours ago Cory was a 9½ or a 10. Now… he was a 6½ or a 7. How’s that for putting things into perspective. I couldn’t believe that Lee and I had almost lost our son that night.
Lee and I finally decided to go home and get some rest at about 1:00 in the morning. There was nothing we could do for Cory, and the next day was going to be a long one meeting with all the doctors. We were told that rounds were at 9:00 and we could get a lot of information by being present. So we headed home and got about four hours of sleep. Thank God my Mom was able to keep Molly over night and all day Friday.
Lee and I arrived back at the hospital at about 8:30am on Friday morning. Friday was a long day. When Lee and I arrived in the morning, a doctor told us that Cory was doing better than the night before. “Last night he crashed. Today he is critical but stable.” I knew how serious Cory’s condition was, but to hear the doctor actually say that he crashed was what finally sent me over the edge. I excused myself from the room, called my Mom, and just sobbed. I had a really hard time getting it together after I hung up from her. After I finally pulled myself together, I went back to the room and waited for rounds to start. During rounds, we were told that they knew what type of bacteria was causing the infection, but it would be another day or so for the cultures to mature before they knew the exact bacteria. We were told that if the infection was in Cory’s bones that he would have to be on IV antibiotics for 6 to 8 weeks. During rounds I had to ask the doctors if we had to prepare ourselves to lose Cory. I cried tears of relief when they told us that death was no longer a concern for Cory.
Lee had gone out of the room at some point to call his parents and I was left alone with Cory. As I sat there I was looking at my little baby boy. He was in an induced paralysis and had spent the night before fighting for his life. “It’s just not fair” I thought to myself. I wondered how this could have happened to Cory and that it wasn’t fair that he should have to go through this after all he’s already been through in his 8½ months. But then I thought that maybe this actually is fair. Cory could have died the night before. THAT would not have been fair. At that point I had to thank God that this was only an infection that was treatable by antibiotics. I would still have my son to cuddle with and read books to and watch him grow up with his sister.
All day the doctors came in and out of Cory’s room and updated us on his condition. As each doctor came in, it was good to hear that Cory was on the right track and was very slowly getting better. During the early morning hours his temperature had gotten up to 42c (107.6f) but it was now slowly dropping back to normal. His sats were looking better and his blood pressure and pulse were also back to normal. Cory was on pain medication, under sedation, and was under induced paralysis. But he was getting better.
Lee’s parents drove in from Belmont for a quick visit with Cory. Finally, at 6:00pm Lee and I finally left the hospital. We picked up Molly from my parent’s house, and then we all went out for dinner. Molly, Lee, and I all slept very soundly that night.
So that brings us to today. This morning I spent some time with Molly at home. After I dropped her off at my parent’s house again I spent the afternoon with Cory. I was told by the doctors that he was still pretty much the same as yesterday… critical but stable. They also told me that he looked better this afternoon than he had this morning. They have decided that since there is no way to conclusively prove if the bacteria is in his bones and heart, that they are going to treat him as if it is there. Better to be safe than sorry. Cory is no longer under induced paralysis, but he is still sedated. Once they can wean him from the sedation they will be able to remove the breathing tube. Cory is currently breathing on his own but the ventilator is still inserted to help him in case he doesn’t get enough volume of air with each breath. Lee is at the hospital now with Cory and phoned to report that he is still doing well.
I want to thank everyone for their kind words, thoughts, and prayers. I can’t tell you how much it means to know that so many people care for Cory. And thanks to all my friends from Darwin School who have sent words of encouragement. It is so nice to know that even after more than 25 years has gone by we can still be there for one another.
I will try to keep you all updated on Cory’s progress. And hopefully the next posting will be a little less wordy! lol
How did we get here? Good question. Let’s go back a few days and I’ll update you on everything that has happened to date.
Back in Edmonton last Monday (Sept. 7th) Cory’s chest tube was removed. This made him a whole lot more comfortable and he became such a happy little baby again. It was so easy to cuddle with him and play with him. We were able to put him on portable oxygen and take him for walks through the hospital. He loved going for walks and getting a change of scenery. We were told that Cory would likely be discharged on Tuesday since he was recovering so well. All of his tests were coming back great and you would never know that he had open heart surgery only three days before. Cory hated when the doctors and nurses came into the room. He would get really cranky and upset, but as soon as they left he was a totally different baby… happy and cooing and playing with Daddy and Mommy.
When I arrived at the hospital on Tuesday morning I was told that Cory didn’t have a good night. He was very agitated and didn’t get a lot of sleep. I also noticed that Cory wasn’t in his crib. Knowing Cory, I thought that maybe he had finally had enough and discharged himself. The nurse, however, informed me that Cory was getting his Cardiac Echo done because he was getting discharged that morning. They just had to make sure that his heart was functioning properly before they could release him. I was so excited! And so proud of my little guy! We got back from the Echo and the doctors came to do their rounds. It was a different set of doctors than we had been seeing over the weekend. Everything was going well, the doctors and nurses were reporting how remarkably Cory had recovered after surgery, and I was just waiting for the doctor to give us our walking papers. Instead, the doctor said that since Cory was still on oxygen he had to stay in the hospital until the end of the week. My happy, smiling face suddenly was not so happy and smiling. I looked at the doctor and informed him that we were actually supposed to be discharged today (according to the weekend doctors and Cory’s Edmonton Cardiologist). This doctor told me that sometimes on a shift change doctors have different opinions and that it was his opinion that Cory should stay. He said Cory was perfectly fine, the only problem was that Cory was on oxygen. I was sooooo angry. He told me to be patient and that we should be able to go home by Friday or Saturday. Now… anyone who knows me knows that I don’t really know the meaning of the word patient. Especially if all the other doctors told me that we’d be going home today.
This doctor came back later in the day and finally told me that Cory would be discharged on Wednesday. Yay! I was once again very happy. I was looking forward to getting home and seeing Molly, who we had left in Winnipeg with my parents. I also thought that it would do Cory good to get home and be surrounded by all his toys and people who love him instead of doctors and nurses who poke and prod him all the time. It would be much less stressful on the little guy.
So we flew home on Wednesday afternoon. On Thursday morning we went to the Heart Centre in Winnipeg so Cory could be checked out on his home turf. Everything was looking good and Cory was given the thumbs up.
Everything was going really great. Except for the “zipper” down Cory’s chest, you would never know he just had surgery. He was happy and playing and just the picture of a healthy kid.
On Sunday (Sept. 13th), I noticed that Cory wasn’t looking as pink as he was in the previous days. I met his Cardiologist at Children’s Emergency so he could examine Cory. His x-rays and Echo all looked good, but we had to put him back on oxygen. No big deal. He pinked up again and was once again as happy as a clam.
The next few days were going great. Molly and Cory were playing nicely together. Cory got excited when he got to go outside for some fresh air. And he especially loved to pet the dog. On Tuesday we headed over to the Heart Centre so we could try to wean him off of his oxygen. The Cardiologist and the nurse were both so pleased at how well Cory was recovering. We decided to reduce the amount of oxygen he was getting and go back to the Heart Centre on Friday to decide if we could discontinue the oxygen for good. That was the plan.
On Thursday (Sept. 17th) I noticed that Cory was not quite himself. I thought that maybe since he hadn’t been sleeping so well over the past couple of nights (because of the oxygen tube up his nose) that maybe it was just catching up to him. As the day went on I noticed that he wasn’t eating properly. And he wasn’t peeing properly either. And he wasn’t smiling at anything. Cory always smiles, so I knew that something was definitely wrong. We headed back to the hospital and the Heart Centre advised us to head straight to Emergency.
We were admitted right away and put in the Resuscitation Room. They increased Cory’s oxygen and things started to look a little better. They thought that maybe Cory was dehydrated and that was causing his sats to drop. They pumped him full of fluids and seemed to be happy with the results. The plan was to send Cory up to a ward over night for observation, then go home the next day. I went home to get an over night bag because I was going to stay in the hospital with Cory. I dropped Molly off at my parent’s house and finally made it back to the hospital where Lee and Cory were waiting for me.
Once I got back to the ER, Lee told me that Cory’s temperature had risen to 39.5c (103.1f) - up from 37c (98.6f) when he was admitted. I also noticed that the there was stuff oozing out of Cory’s incision where a small scab had recently fallen off. And his heart rate had accelerated to over 200 beats per minute. Nobody seemed too concerned about this and it was all chalked up to dehydration. Hmmmm…..
We were finally ready to move up to the ward. I carried Cory as the nurse accompanied us up to the fourth floor. On the way up to the fourth floor, Cory’s monitors started doing weird things. The nurse was a little stumped. Once we got to the ward (less than five minutes after leaving the ER) I set Cory on the bed. I was really concerned when I noticed that Cory’s whole body had gotten mottled. He was puffy all over and his heart was racing. His sats were dropping and Cory was crashing. Doctors and nurses came running into the room and hands were flying everywhere. Lee and I were standing in the corner watching all of this and couldn’t believe what was going on. Neither of us could understand how this could happen if Cory was just dehydrated. The respiratory therapist was bagging Cory to try to help him to breath. He put a mask over Cory’s mouth and nose and started pumping air into his lungs. I will never forget the look of terror in Cory’s eyes. I felt so helpless. The doctor told me to go stand by Cory and hold his hand to try to calm him. It didn’t help. Cory was going into shock and the doctors were doing everything they could to try to get him stabilized. As I was shuffled back to the corner, I counted 11 doctors and nurses working on Cory at one point. I can’t tell you how scary it is to see that many people trying to save your baby.
Once Cory was stabilized enough, he was moved to the PICU. Lee and I were to remain seated in the waiting room until they called for us. It was now about 9:30 at night and we were exhausted. We waited and waited and waited some more. Our Cardiologist finally came out and told us what was going on with Cory. They were trying to get a central line into him, as well as some other IV’s and tubes. They had to put a breathing tube in and were trying to get Cory to respond to medications to lower his heart rate and increase his blood pressure. We were told they were having a difficult time inserting the lines since Cory’s blood pressure was so low they couldn’t find a pulse or any veins.
We were told that Cory likely had an infection due to the surgery. We were told that the likely hood of infection after surgery was about 20% and unfortunately, Cory had the bad luck of being in that 20%. It was just dumb luck that it happened to Cory. We were told that nothing we did or didn’t do had caused this to happen. We were also told that we saved Cory’s life by getting him to the hospital when we did. I hope that those are words that you never have to hear from your doctor about your child. I knew that Cory was having trouble, but until she said those words I don’t think I really knew how much trouble he was in.
Lee and I continued to wait. Finally at about midnight we were allowed in to see our son. He was puffy, and full of wires and tubes and medications. They had given him a drug to make him forget what was happening to him. They had also given him a drug to paralyze him. Seeing him laying in that bed was far worse than seeing him after either of his surgeries. Several different doctors came and went. The Cardiologist, Infectious Diseases, Intensivists… We were bombarded with so much information and it was so overwhelming. We were told that Cory had a major internal bacterial infection. They were pumping him full of antibiotics and were trying to get his temperature down, which had now risen to 40c (104.0f). I asked the doctors on a scale of 1 to 10 (with 1 being minor and 10 being life threatening) where Cory was sitting. I like the 1 to 10 scale because it really puts thing into perspective. They told us that three hours ago Cory was a 9½ or a 10. Now… he was a 6½ or a 7. How’s that for putting things into perspective. I couldn’t believe that Lee and I had almost lost our son that night.
Lee and I finally decided to go home and get some rest at about 1:00 in the morning. There was nothing we could do for Cory, and the next day was going to be a long one meeting with all the doctors. We were told that rounds were at 9:00 and we could get a lot of information by being present. So we headed home and got about four hours of sleep. Thank God my Mom was able to keep Molly over night and all day Friday.
Lee and I arrived back at the hospital at about 8:30am on Friday morning. Friday was a long day. When Lee and I arrived in the morning, a doctor told us that Cory was doing better than the night before. “Last night he crashed. Today he is critical but stable.” I knew how serious Cory’s condition was, but to hear the doctor actually say that he crashed was what finally sent me over the edge. I excused myself from the room, called my Mom, and just sobbed. I had a really hard time getting it together after I hung up from her. After I finally pulled myself together, I went back to the room and waited for rounds to start. During rounds, we were told that they knew what type of bacteria was causing the infection, but it would be another day or so for the cultures to mature before they knew the exact bacteria. We were told that if the infection was in Cory’s bones that he would have to be on IV antibiotics for 6 to 8 weeks. During rounds I had to ask the doctors if we had to prepare ourselves to lose Cory. I cried tears of relief when they told us that death was no longer a concern for Cory.
Lee had gone out of the room at some point to call his parents and I was left alone with Cory. As I sat there I was looking at my little baby boy. He was in an induced paralysis and had spent the night before fighting for his life. “It’s just not fair” I thought to myself. I wondered how this could have happened to Cory and that it wasn’t fair that he should have to go through this after all he’s already been through in his 8½ months. But then I thought that maybe this actually is fair. Cory could have died the night before. THAT would not have been fair. At that point I had to thank God that this was only an infection that was treatable by antibiotics. I would still have my son to cuddle with and read books to and watch him grow up with his sister.
All day the doctors came in and out of Cory’s room and updated us on his condition. As each doctor came in, it was good to hear that Cory was on the right track and was very slowly getting better. During the early morning hours his temperature had gotten up to 42c (107.6f) but it was now slowly dropping back to normal. His sats were looking better and his blood pressure and pulse were also back to normal. Cory was on pain medication, under sedation, and was under induced paralysis. But he was getting better.
Lee’s parents drove in from Belmont for a quick visit with Cory. Finally, at 6:00pm Lee and I finally left the hospital. We picked up Molly from my parent’s house, and then we all went out for dinner. Molly, Lee, and I all slept very soundly that night.
So that brings us to today. This morning I spent some time with Molly at home. After I dropped her off at my parent’s house again I spent the afternoon with Cory. I was told by the doctors that he was still pretty much the same as yesterday… critical but stable. They also told me that he looked better this afternoon than he had this morning. They have decided that since there is no way to conclusively prove if the bacteria is in his bones and heart, that they are going to treat him as if it is there. Better to be safe than sorry. Cory is no longer under induced paralysis, but he is still sedated. Once they can wean him from the sedation they will be able to remove the breathing tube. Cory is currently breathing on his own but the ventilator is still inserted to help him in case he doesn’t get enough volume of air with each breath. Lee is at the hospital now with Cory and phoned to report that he is still doing well.
I want to thank everyone for their kind words, thoughts, and prayers. I can’t tell you how much it means to know that so many people care for Cory. And thanks to all my friends from Darwin School who have sent words of encouragement. It is so nice to know that even after more than 25 years has gone by we can still be there for one another.
I will try to keep you all updated on Cory’s progress. And hopefully the next posting will be a little less wordy! lol
Sunday, September 6, 2009
Bye Bye Chest Tube
Cory a few days before surgery.
Cory was moved up to the I.C.E. Unit yesterday. That is kind of like a half-way house between I.C.U. and the ward. He is doing extremely well and he is looking great! He has a chest tube in to drain any fluid from his chest cavity, and one IV in each foot. The IV's in his feet are only to administer medication when needed. They are not hooked up to any lines that constantly drip medicine into him.
Pictures taken in the ICU before he was moved to ICE.
He gets kind of upset when the nurses come around to work on him. We had to give him a short of Morphine yesterday to help ease the pain a little. After the nurses changed a few of his dressings I got to hold him. I was a little apprehensive because when I had tried to hold him earlier in the day he seemed to be in pain. But the nurse passed him over to me very carefully and he settled into my arms. He was so content. He just stared at me and stared and Lee. Then he drifted off to sleep. I felt horrible when we had to wake him to put him back in his crib. But I think it did us both some good to have a cuddle.
The surgeon told us yesterday that Cory's chest tube will likely come out today. That will be a huge relief as one of the nurses told me that the chest tube is very uncomfortable and painful for Cory. Every time he moves or breathes is scratches inside. Poor little kid. So we're hoping that Cory will feel a whole lot more comfortable and be able to recover that much more quickly once the chest tube is removed.Lee & I have been spending most of our time in the hospital. It is such a different experience now that Cory is 8 months old. It is so much more difficult to leave him behind in the hospital. He looks around his room at the doctors and nurses and has a look on his face like like "What the heck is going on here??" When the nurses come around, he gets a little scowl on his face then scrunches it up and turns his head and completely ignore them. I think he's warning them to back off and that he's had enough of this hospital stuff! Cory finally started looking at me again
once he was moved to the I.C.E. Unit. I can't tell you how happy I was to see those big brown eyes again! Now he looks to Lee & I for comfort because he knows we make the nurses stop bothering him.Well... I have to get to the hospital this morning (Sunday) for the doctor's rounds. That's where we get all our information on what the next steps are for Cory and get the real story on how he is doing.
Thank you for all of your thoughts and comments here and on Facebook and to our emails! Lee and I really appreciate all your support!
Saturday, September 5, 2009
I Think He's Mad at Me!
When Lee & I were finally allowed to go see Cory in the PICU, all we could hear before we rounded the corner to his bed was the poor fellow sounding really really mad. I took this as a good sign. He looked a little puffy around his neck area, but other than that he looked pretty good. Not nearly as many wires and IV’s as last time. I was ready to see him as he was when he got out of surgery the first time with thousands of wires on him, so it was a pleasant surprise to see him looking more comfortable. Cory was kicking his legs and trying to move. Boy oh boy was he mad though. The doctor told us that he likely had a very bad headache due to the different way his blood was flowing now after his surgery. I guess more blood goes to his head, so when he is reclined it really gives him a bad headache. The doctor said that the more he sits up the less his head will hurt.
It was really frustrating for me not to be able to do anything to help Cory. He was very agitated and very irritable. Every few minutes he would let out a pitiful cry and you just knew that he was in pain. It was so heartbreaking. Because he still has his drain tube in his chest I couldn’t even hold him to make him feel better. The best I could do was softly sing my off-key lullabies in his ear.
Cory was given some Tylenol and some Morphine. The Morphine didn’t seem to help him, so they switched him to Fentanyl, another type of pain killer. That seemed to work a little better. Cory was also a little ticked because he was so hungry. They didn’t want Cory to eat until four hours after his breathing tube was removed. This wouldn’t be until 4:00pm. The last time he had formula was at midnight before surgery. At 4:00am he was allowed only to have some water. I couldn’t imagine going 16 hours without food! Who am I kidding? I couldn’t imagine going three hours without food! We finally got Cory some formula at about 3:40. He was so happy! He drank it down and then fell asleep.
I was so relieved that he seemed to settle after he ate. He had gotten himself so worked up. His temperature had climbed to 39.4c. He was so hot to touch. I probably could have fried an egg on his head. The night nurse gave him a sponge bath and then put some ice washcloths on his head. This started to bring his temperature down immediately. Not quickly, but you could see the temperature falling bit by bit. By the time I left at 9:00pm his temperature was down to 38.0c. I felt better.
At about 7:00pm I noticed that Cory was looking a little more alert. He seemed to be looking at the nurses when they came to check on him, and he would look at people walking by his bed. He always seemed to be looking off to his right side. I was sitting on his left side, so I thought that I would go around to the other side of the bed where Cory could see me. I figured he would be so happy to see Mommy that he would light right up. Wrong! He always seemed to close his eyes or go back to sleep whenever I popped my face in front of his. I thought “Well, I guess he’s still really tired. Poor little guy.” But after this happened over and over again, I started to think that maybe Cory was mad at me. And as if the nurse was reading my mind, she came over and told me not to be upset, because sometimes when babies come out of surgery they tend to ignore their parents… especially Mom. I asked if she thought he thought I did this to him, to which she replied “No. But he thinks you didn’t stop it from happening to him.” She told me that this is how babies make their Mommies pay for letting them get hurt. She then told me that it sometimes happens too when babies are left behind while parents go on vacation or leave them for a period of time for other reasons. I thought “Great! Now Molly’s going to give me the cold shoulder too when we get home for leaving her at Grandma’s house. Just great!” I guess we’ll have to wait and see how that one plays out.
So to sum it all up, Cory is doing quite well. He only has his drain tube in his chest and a couple of IV’s. He has the pacemaker wires connected to his heart, but they have not had to regulate his heart with the pacemaker. We are hoping that the drain tube will come out today and that Cory will be moved up to a ward to finish his recovery.
I’ll let you know in my next posting if Cory has decided to let me back into his good graces or not. Keep your fingers crossed for me!
It was really frustrating for me not to be able to do anything to help Cory. He was very agitated and very irritable. Every few minutes he would let out a pitiful cry and you just knew that he was in pain. It was so heartbreaking. Because he still has his drain tube in his chest I couldn’t even hold him to make him feel better. The best I could do was softly sing my off-key lullabies in his ear.
Cory was given some Tylenol and some Morphine. The Morphine didn’t seem to help him, so they switched him to Fentanyl, another type of pain killer. That seemed to work a little better. Cory was also a little ticked because he was so hungry. They didn’t want Cory to eat until four hours after his breathing tube was removed. This wouldn’t be until 4:00pm. The last time he had formula was at midnight before surgery. At 4:00am he was allowed only to have some water. I couldn’t imagine going 16 hours without food! Who am I kidding? I couldn’t imagine going three hours without food! We finally got Cory some formula at about 3:40. He was so happy! He drank it down and then fell asleep.
I was so relieved that he seemed to settle after he ate. He had gotten himself so worked up. His temperature had climbed to 39.4c. He was so hot to touch. I probably could have fried an egg on his head. The night nurse gave him a sponge bath and then put some ice washcloths on his head. This started to bring his temperature down immediately. Not quickly, but you could see the temperature falling bit by bit. By the time I left at 9:00pm his temperature was down to 38.0c. I felt better.
At about 7:00pm I noticed that Cory was looking a little more alert. He seemed to be looking at the nurses when they came to check on him, and he would look at people walking by his bed. He always seemed to be looking off to his right side. I was sitting on his left side, so I thought that I would go around to the other side of the bed where Cory could see me. I figured he would be so happy to see Mommy that he would light right up. Wrong! He always seemed to close his eyes or go back to sleep whenever I popped my face in front of his. I thought “Well, I guess he’s still really tired. Poor little guy.” But after this happened over and over again, I started to think that maybe Cory was mad at me. And as if the nurse was reading my mind, she came over and told me not to be upset, because sometimes when babies come out of surgery they tend to ignore their parents… especially Mom. I asked if she thought he thought I did this to him, to which she replied “No. But he thinks you didn’t stop it from happening to him.” She told me that this is how babies make their Mommies pay for letting them get hurt. She then told me that it sometimes happens too when babies are left behind while parents go on vacation or leave them for a period of time for other reasons. I thought “Great! Now Molly’s going to give me the cold shoulder too when we get home for leaving her at Grandma’s house. Just great!” I guess we’ll have to wait and see how that one plays out.
So to sum it all up, Cory is doing quite well. He only has his drain tube in his chest and a couple of IV’s. He has the pacemaker wires connected to his heart, but they have not had to regulate his heart with the pacemaker. We are hoping that the drain tube will come out today and that Cory will be moved up to a ward to finish his recovery.
I’ll let you know in my next posting if Cory has decided to let me back into his good graces or not. Keep your fingers crossed for me!
Friday, September 4, 2009
OK. Get Her Out of Here.
What a summer it has been. What a year it has been! Two kids… six and a half months apart… and we’re in our 40’s. Oh boy!
Since I last posted in March, Lee & I have been pretty busy. A LOT has been happening over at Casa Myers. 14½ month old Molly is growing like a weed and running (walking is just not fast enough for her) all over the place. She is Mommy’s little helper, whether I want the help or not! She has turned into a delightful little toddler who has just recently learned the fine art of throwing herself on the floor in tears if she doesn’t get her way. Lovely! She and Daddy belong to the “Adventure Club”. They can generally be found outside riding on the Gator, checking on the horses, or swinging in her swing. Molly would be outside all day if we let her.
Cory is also growing. Not so much like a weed, but rather more like a 100 year old oak tree... very slowly! He is a happy little 14½ pounder and is now 8 months old. He is full of smiles and chuckles and loves to pull hair. He absolutely lights up when his sister walks into the room. He likes to roll on the floor (although he sometimes gets stuck in an awkward angle) and he loves to watch the dog. His favourite TV show is Mickey Mouse Clubhouse. Sometimes I think he is going to bounce right out of his bouncy chair with excitement when the Mickey Mouse theme song comes on! He gets a great big grin on his face as soon as Mickey says “Hey Everybody!”
But I can update you on our summer a little later in another entry. You’re probably all anxious to hear about how Cory is doing.
In late April Cory had his Heart Catheter surgery at Children’s Hospital in Winnipeg. This is a procedure where a tube is inserted near his groin and threaded up to his heart. Then the doctors can take a look at how Cory’s heart is functioning and if there are any concerns for his upcoming surgery. Everything looked good the doctors were very pleased with what they saw.
We were notified that Cory’s second surgery would be performed on July 3rd in Edmonton. We were excited that he would be getting his Glenn Procedure done. After he recovered from his surgery he would hopefully thrive and grow and we wouldn’t have to be so protective of him and keep him away from germs anymore. Lee & I decided that it would be best to leave our very active Molly at home with my Mom & Dad this time. This way we would be able to focus 100% on Cory and his recovery. Turns out Molly was sick and probably wouldn’t have enjoyed the flight too much anyway.
Lee & I boarded the plane with Cory on July 1st. As it turns out, Lee & I weren’t feeling so hot either. Lee & Cory spent the evening watching the amazing Canada Day fireworks display from our hotel room window. I, however, spent the evening in the hospital emergency room hoping that the doctor would in fact tell me that I wasn’t going to die despite the fact that I felt like I was going to drop at any minute. I dragged my butt back to our hotel room and tried to get some sleep. We were to meet with the surgeon the next morning at 7:00am.
The next morning I was coughing, Lee was sneezing, and Cory had a tiny bit of a runny nose. The surgeon walked in, took one look at our motley crew and immediately cancelled the surgery. I was so upset! But the risks were too high if Cory were to get sick in recovery. The surgeon told us that we could wait in Edmonton to see if Cory was going to get better or worse and possibly get a surgery date for late the following week. Lee & I decided that we could not leave Molly without us for that long and boarded a flight home that same day. There was no guarantee that we would get surgery and we likely would have been in Edmonton for close to a month. We were both so discouraged.
Cory was first on the waiting list for cancellations in July. We kept hoping to get a phone call saying they had a spot for us, but the call never came. The surgeon was on holidays during August so it looked like we would be waiting until September for his surgery. It was a long summer keeping an eye on Cory. The oxygen saturation levels in his blood (his O2 sats) were jumping all over the place. His fingers and toes were turning blue from time-to-time, and I was starting to get really frustrated. We spent most of August going back and forth to the Heart Centre in Winnipeg so they could keep an eye on Cory.
We finally got a call that Cory would finally be getting his surgery on September 4th. Again we decided it would be best to leave Molly in Winnipeg and again Lee and Cory and I boarded the plane. When we met with the surgeon yesterday (September 3rd) he told us that Cory looked really good and surgery was a go! Cory was slated in for the first surgery in the morning and we were thrilled with that as there is less risk of having surgery bumped due to other surgeries running late or other unexpected emergencies.
Yesterday was a long morning. Cory was not allowed to have his formula past 4:00am as he was going to be sedated for one of his tests. We started our day at 7:00am and met the surgeon, the anaesthetist, and the physiotherapist. Cory had x-rays, blood work, an EKG, and a sedated echo-cardiogram done. By the time all the procedures were done at 1:00pm Cory was one hungry little boy. He was so good throughout the whole morning though. Barely fussed considering what he had been put through!
I was told yesterday that I would be able to bring Cory into the operating room and stay with him until he was asleep. That made me feel good. I’m not sure how I would have felt handing off my scared little baby to some stranger and watching her walk away with him. So this morning, Lee and Cory and I were all here at 7:00am again. We finally were brought to the OR waiting area where I confirmed that I could go in with Cory. Everyone was very friendly and smiley with Cory when they walked by the waiting area. Finally the nurse came to get us. Daddy gave Cory a kiss and a hug and told him to have a good surgery. I took the baby from Lee and following the nurse to the operating room. I held Cory in my arms as they tried to find a good vein on his hand to insert the IV. Cory was a little upset (and understandably so) so they decided to use the gas mask to help Cory fall asleep. He was still in my arms while they were holding the mask to his face. Cory did not like this at all and was putting up a struggle. I think he was also holding his breath because when the doctor took the mask away and said that Cory should be asleep now, Cory shook his head and let out a big cry. The doctor tried again and this time Cory slipped away to Sleepy La-la Land. I laid Cory on the operating table and had intended to give him a kiss on the head and I wanted to tell him to be brave and strong through surgery. I was going to tell him that Mommy and Daddy would be waiting just outside and would be here when he woke up. Instead, I heard someone (presumably the anaesthetist) say "OK. Get her out of here." and I was whisked away by the same nurse who had brought us in. I was taken by surprise and totally off guard so as I was leaving I called out to Cory to have a good surgery. No kiss. No assurance that we’d be waiting for him. Nothing but a holler across the operating room. Oh well. At least I know he is in very good hands with is surgeon Dr. Ross. No need to worry.
So now here we sit. Out in the waiting area with all the other parents who look as anxious, if not a little bored, as we do. At least I have my blog to keep me busy for part of the wait. Cory went in at about 8:45am and it is now 11:00. We haven’t received any updates yet on how the surgery is going. Kind of frustrating, but I guess no news is good news. The surgeon told us the Cory would be in there for about 4 to 5 hours and that this was to be a fairly straight forward, easy surgery. I’m glad he thinks so! Nothing easy about open heart surgery to me!
I now find myself looking up every time I hear footsteps… wondering if it is someone who can tell us how Cory is doing. No news yet. So I guess this means it is time to sign off. I will update you all again later to let you know how surgery went and how Cory is doing with his recovery.
Thank you to everyone who has sent their thoughts, prayers, and well wishes. It is so comforting to know that everyone cares so much.
----
Hi! Me again! It is now 11:40 and Dr. Ross just came out to tell us that the “relatively simple procedure” went very well and that Cory is doing great. They are going to keep him in there for about another hour and take out his breathing tube once he wakes up. They find that most babies do very well without the breathing tube after the third operation and, since Cory is doing remarkably well after this his second operation, they want to take out his tube before he even gets to the PICU. Cory’s sats are exactly where the doctor wants them to be and he is very very pleased with how everything went. He expects that Cory will recover very quickly. Yay!
Since I last posted in March, Lee & I have been pretty busy. A LOT has been happening over at Casa Myers. 14½ month old Molly is growing like a weed and running (walking is just not fast enough for her) all over the place. She is Mommy’s little helper, whether I want the help or not! She has turned into a delightful little toddler who has just recently learned the fine art of throwing herself on the floor in tears if she doesn’t get her way. Lovely! She and Daddy belong to the “Adventure Club”. They can generally be found outside riding on the Gator, checking on the horses, or swinging in her swing. Molly would be outside all day if we let her.
Cory is also growing. Not so much like a weed, but rather more like a 100 year old oak tree... very slowly! He is a happy little 14½ pounder and is now 8 months old. He is full of smiles and chuckles and loves to pull hair. He absolutely lights up when his sister walks into the room. He likes to roll on the floor (although he sometimes gets stuck in an awkward angle) and he loves to watch the dog. His favourite TV show is Mickey Mouse Clubhouse. Sometimes I think he is going to bounce right out of his bouncy chair with excitement when the Mickey Mouse theme song comes on! He gets a great big grin on his face as soon as Mickey says “Hey Everybody!”
But I can update you on our summer a little later in another entry. You’re probably all anxious to hear about how Cory is doing.
In late April Cory had his Heart Catheter surgery at Children’s Hospital in Winnipeg. This is a procedure where a tube is inserted near his groin and threaded up to his heart. Then the doctors can take a look at how Cory’s heart is functioning and if there are any concerns for his upcoming surgery. Everything looked good the doctors were very pleased with what they saw.
We were notified that Cory’s second surgery would be performed on July 3rd in Edmonton. We were excited that he would be getting his Glenn Procedure done. After he recovered from his surgery he would hopefully thrive and grow and we wouldn’t have to be so protective of him and keep him away from germs anymore. Lee & I decided that it would be best to leave our very active Molly at home with my Mom & Dad this time. This way we would be able to focus 100% on Cory and his recovery. Turns out Molly was sick and probably wouldn’t have enjoyed the flight too much anyway.
Lee & I boarded the plane with Cory on July 1st. As it turns out, Lee & I weren’t feeling so hot either. Lee & Cory spent the evening watching the amazing Canada Day fireworks display from our hotel room window. I, however, spent the evening in the hospital emergency room hoping that the doctor would in fact tell me that I wasn’t going to die despite the fact that I felt like I was going to drop at any minute. I dragged my butt back to our hotel room and tried to get some sleep. We were to meet with the surgeon the next morning at 7:00am.
The next morning I was coughing, Lee was sneezing, and Cory had a tiny bit of a runny nose. The surgeon walked in, took one look at our motley crew and immediately cancelled the surgery. I was so upset! But the risks were too high if Cory were to get sick in recovery. The surgeon told us that we could wait in Edmonton to see if Cory was going to get better or worse and possibly get a surgery date for late the following week. Lee & I decided that we could not leave Molly without us for that long and boarded a flight home that same day. There was no guarantee that we would get surgery and we likely would have been in Edmonton for close to a month. We were both so discouraged.
Cory was first on the waiting list for cancellations in July. We kept hoping to get a phone call saying they had a spot for us, but the call never came. The surgeon was on holidays during August so it looked like we would be waiting until September for his surgery. It was a long summer keeping an eye on Cory. The oxygen saturation levels in his blood (his O2 sats) were jumping all over the place. His fingers and toes were turning blue from time-to-time, and I was starting to get really frustrated. We spent most of August going back and forth to the Heart Centre in Winnipeg so they could keep an eye on Cory.
We finally got a call that Cory would finally be getting his surgery on September 4th. Again we decided it would be best to leave Molly in Winnipeg and again Lee and Cory and I boarded the plane. When we met with the surgeon yesterday (September 3rd) he told us that Cory looked really good and surgery was a go! Cory was slated in for the first surgery in the morning and we were thrilled with that as there is less risk of having surgery bumped due to other surgeries running late or other unexpected emergencies.
Yesterday was a long morning. Cory was not allowed to have his formula past 4:00am as he was going to be sedated for one of his tests. We started our day at 7:00am and met the surgeon, the anaesthetist, and the physiotherapist. Cory had x-rays, blood work, an EKG, and a sedated echo-cardiogram done. By the time all the procedures were done at 1:00pm Cory was one hungry little boy. He was so good throughout the whole morning though. Barely fussed considering what he had been put through!
I was told yesterday that I would be able to bring Cory into the operating room and stay with him until he was asleep. That made me feel good. I’m not sure how I would have felt handing off my scared little baby to some stranger and watching her walk away with him. So this morning, Lee and Cory and I were all here at 7:00am again. We finally were brought to the OR waiting area where I confirmed that I could go in with Cory. Everyone was very friendly and smiley with Cory when they walked by the waiting area. Finally the nurse came to get us. Daddy gave Cory a kiss and a hug and told him to have a good surgery. I took the baby from Lee and following the nurse to the operating room. I held Cory in my arms as they tried to find a good vein on his hand to insert the IV. Cory was a little upset (and understandably so) so they decided to use the gas mask to help Cory fall asleep. He was still in my arms while they were holding the mask to his face. Cory did not like this at all and was putting up a struggle. I think he was also holding his breath because when the doctor took the mask away and said that Cory should be asleep now, Cory shook his head and let out a big cry. The doctor tried again and this time Cory slipped away to Sleepy La-la Land. I laid Cory on the operating table and had intended to give him a kiss on the head and I wanted to tell him to be brave and strong through surgery. I was going to tell him that Mommy and Daddy would be waiting just outside and would be here when he woke up. Instead, I heard someone (presumably the anaesthetist) say "OK. Get her out of here." and I was whisked away by the same nurse who had brought us in. I was taken by surprise and totally off guard so as I was leaving I called out to Cory to have a good surgery. No kiss. No assurance that we’d be waiting for him. Nothing but a holler across the operating room. Oh well. At least I know he is in very good hands with is surgeon Dr. Ross. No need to worry.
So now here we sit. Out in the waiting area with all the other parents who look as anxious, if not a little bored, as we do. At least I have my blog to keep me busy for part of the wait. Cory went in at about 8:45am and it is now 11:00. We haven’t received any updates yet on how the surgery is going. Kind of frustrating, but I guess no news is good news. The surgeon told us the Cory would be in there for about 4 to 5 hours and that this was to be a fairly straight forward, easy surgery. I’m glad he thinks so! Nothing easy about open heart surgery to me!
I now find myself looking up every time I hear footsteps… wondering if it is someone who can tell us how Cory is doing. No news yet. So I guess this means it is time to sign off. I will update you all again later to let you know how surgery went and how Cory is doing with his recovery.
Thank you to everyone who has sent their thoughts, prayers, and well wishes. It is so comforting to know that everyone cares so much.
----
Hi! Me again! It is now 11:40 and Dr. Ross just came out to tell us that the “relatively simple procedure” went very well and that Cory is doing great. They are going to keep him in there for about another hour and take out his breathing tube once he wakes up. They find that most babies do very well without the breathing tube after the third operation and, since Cory is doing remarkably well after this his second operation, they want to take out his tube before he even gets to the PICU. Cory’s sats are exactly where the doctor wants them to be and he is very very pleased with how everything went. He expects that Cory will recover very quickly. Yay!
Subscribe to:
Posts (Atom)
