back home ... sort of.

Hi again.



Lee again, Just a quick note to update everyone on Cory's progress as it's been awhile since we last posted. People who have been following along have been left wondering and the simplest explanation is that our internet in the hotel is lousy to say the least, and while they advertised 'high speed', it was moderate speed at best. After repeated attempts to post and either losing the information or locking everything up, we gave up.



In a nutshell.



Cory continued to do well once he had the chest tube removed and made great strides each day. His opeartion was on Sunday, by the Friday, the doctors were prepared to let him come home in a "few days". The problem of course was that this was right before the long weekend, so no staff were around to do any of the paperwork or planning to get him back to Winnipeg.



With him doing so well, Kris and I decided that I would go home on Friday to be with Molly and Cory and her would follow on the Tuesday after the long weekend.



Unfortunately, things didn't go as planned with the preparations and Kristine and Cory never made it back until the Friday, a few days later than they were supposed to. They had a nurse fly out to meet them and fly back with them in case anything happened along route.

Cory went to a ward in the Health Sciences Centre in Winnipeg. He has continued to improve to where we were able to bring him home today for the first time in 5 weeks. It will be soooo nice to sleep in our own beds once again.

I'm sure Kris will have more to say at a later date, but for now.... we're home!

An update...

First of all, this is Lee writing tonight. It may not be as informative as Kris' novels, but you can use that spare time to enjoy a quick Mexican vacation. Please also understand I have a short memory so any of these events could be out, either way, by 24 hours or more. I have also not read the previous blog in a few days and have no idea if I'm repeating what Kris has already done.

Cory came through his surgery beautifully on Sunday. It was a 4 hour procedure and I'll try to explain it as best I can. "This thing in his heart was no good and had to be replaced."

Actually in his first surgery, they had to connect the descending aeorta to the corrotted artery which are different sizes. To facilitate this, they use a patch to cover the stitches and joint. In Cory's case, the patch was a fraction too small and with some additional scar tissue buildup was creating uneven pressures ( 30% difference ) on opposites sides of the join. We had hoped it could be rectified by a simple balloon through the artery, but nothing's ever easy for us. It's also something that could have been caught during his second surgery and fixed then had they known it existed at the time. Just our dumb luck.

After surgery, he was wheeled back to the PICU with, as usual, his body full of tubes, hoses, IV's, chest and breathing tubes. They brought him out of sedation within a few hours but kept him "snowed" for comfort sake. The first night and next day were relatively uneventful, just an obscene amount of drugs and fluids, just like college!

Tuesday morning, he has his breathing tube removed which is a huge thing when he's been unable to breathe on his own for almost three weeks now.

Wednesday he got moved to a ward on the 4th floor ( not that the floor means anything to anyone else ) and Cory went from a happy contented little man to crying non-stop all day long. Initially it was was just blamed on the transfer and the fact he hadn't really moved or been out of a bed in weeks.

Kris and I were hoping he would have his chest tube removed before he went, if not right away as we arrived. Unfortunately he has some leakage from his lymph nodes showing up in his drainage tube and they were unable to do anything until that was taken care of. While we knew ( suspected ) that it was the source of his discomfort, after all it's imbedded 8"in his chest, we were unable to get the green light to pull it. S0 they amped up the morphine and hoped he would get settled. He never did.

For the better part of 24 hours he never slept and cried continually. The doctors suspected it might be morphine withdrawals, might be pain. No-one really knew for sure. But as they poured more morphine to him, withdrawals were obviously ruled out! Numerous doctors came and went all night but had no idea, outside of the chest tube, what the problem could be. Finally Kris got him settled at 5:00 a.m this morning and got her only hour of sleep.

First thing this morning, the surgery/cardiac doctors did their rounds and concluded that the chest tube had to be pulled. Out it came and off to sleep Cory went. The change was virtually immediate. He had a great day, slept most of it as expected and even had a few smiles for us tonight.

Kris and I just went for a late dinner and they back to the hospital for the night. It's almost 10:30 and they've just out another IV in Cory's head as his veins have all put up a closed sign and are having no part of being poked again. He's got two or three other ones, so I'm not sure why this is necessary, but I just listen for my name around here.

Cory is doing awesome. Three open heart surgeries, two heart catheters, literally dozens of x-rays, CT scans, ultrasounds and echocardiograms not to mention the hundreds of pokes, IV's and tubes he's had inserted into his tiny body the last 9 months and he still fights and amazes us every single day. This kid has earned his blue bike.

Thanks for all the support and well wishes. There have been as many days of desperation, shock and utter fear, as there have been of joy and celebration, but still, we feel incredibly fortunate that better days appear to be on the horizon for us. We truly have been blessed as we have met many families through this "adventure" who's babies have also endured countless operations and unspeakable pain and may still never get to leave this hospital. It gives one tremendous perspective.

Déjà vu

Last Saturday the biggest thing on my mind was trying to work with the doctor and the pharmacist in hopes of getting Cory’s Morphine and Atavan doses to a point where Cory would be comfortable and rested.

Last Sunday the biggest thing on my mind was getting a different nurse to work with Cory. The nurse he had assigned to him was rubbing me the wrong way. I didn’t like the way she was caring for Cory and I don’t think she liked that I am so protective of him. It was mutually agreed that this assignment was not a good fit, so she was replaced with a nurse who was a much better fit. Most of the time I’m pretty easy going (and Don and Shelly can back me up on that! lol) but when your child is lying there, unable to stick up for himself, you tend to get a little stressed when things continually go wrong.

Cory was doing well, and seeming to get better. The doctors were talking about removing the central line in his groin and replacing it with a PICC line. This would then be used to administer his IV antibiotics instead of the central line. I had provided all my information to the appropriate people in order to get the home antibiotic team scheduled to come out to the house. The doctors were pleased with Cory’s progress. His blood cultures were coming back negative, indicating that the antibiotics were doing their job and getting rid of the bacteria. Cory and I would watch Mickey Mouse Playhouse in the mornings and dance to the theme song. He was laughing and smiling and starting to look like his old self.

On Monday morning I noticed that Cory’s sats were a little low. We turned up his oxygen a little and they seemed to get back up to where they were supposed to be. A little later I noticed that Cory wasn’t too interested in eating. Shortly after that I noticed that Cory’s sats were still dropping. We had turned his oxygen up a few notches by this point, but it didn’t seem to be helping. His sats were still dropping. I phoned Lee and told him he might want to get to the hospital sooner than later. The doctors came in and took a look at Cory. His temperature was a little high, so they gave him some Tylenol and turned up the oxygen some more. This didn’t seem to help either. His sats were sitting in the low 60’s and high 50’s. That’s not good. His oxygen was turned up some more and more doctors came in. One doctor suggested that he might be dehydrated. “Déjà vu”, I thought. “Isn’t this how this all started last week?” The nurse called the Rapid Response Team, just in case Cory needed their attention. The next thing I knew, there were 15 people in Cory’s room, and about that many more in the hallway outside of his room. Doctors, nurses, respiratory therapists… everyone seemed to want to be in Cory’s room. Lee and I stood back and watched everyone hover over Cory again. The doctor from the PICU and her team came up to take a look at him. The Cardiologist came up to take a look at him. When I looked up to meet Lee’s gaze, I knew he was thinking the same thing I was… déjà vu.

It was decided that Cory should be moved back over to the PICU. There was a whole procession of people taking him there. Just as Lee and I were leaving Cory’s room on the ward, a nurse handed us a beautiful flower arrangement that my Mom had sent. I almost laughed hysterically when she handed them to me. The timing couldn’t have been better! Once we arrived to the PICU, the nurse promptly told us that live flowers were not allowed in the PICU. Too funny.

Once Cory was in the PICU, the doctors and nurses wanted to check him over. Lee and I were escorted once again to the waiting room where we waited for only two hours this time. When we were finally allowed in to see Cory he was sedated and resting. The doctor told us that Cory may have another infection, or that he was resistant to the antibiotics he was being given and his first infection was coming back. Cardiology was called in to do an Echo. X-ray was called in too. Both the Echo and the x-ray looked good. Cory was needing a lot of oxygen at this point just to keep his sats at an acceptable level. They replaced his nose prongs with a face mask. The doctor was having a really difficult time trying to get an ART line into Cory, so a surgeon was called to do a cut-down. They had to cut into Cory’s ankle, look for an artery, and insert the IV line. This was going to take a couple of hours, and it was already after midnight, so Lee and I decided to go home to try to get some rest. Déjà vu.

The next morning we were hoping to hear that they had some news about Cory. Everyone seemed stumped by our little guy. Infectious Diseases couldn’t find anything. Cardiology couldn’t find anything. The PICU Intensivist couldn’t find anything. Cory had to have his breathing tube re-inserted on Tuesday. He was once again paralyzed and sedated. Déjà vu.

Wednesday morning was a really tough one on me. Lack of sleep, stress, and the unknown were all weighing heavily on me. At rounds that morning the air just seemed different. It seemed frustrated. No one knew what was wrong with Cory. Everyone was looking at me with a look of “we’re stuck, we’re sorry” on their faces. It was then decided that it would be best if Cory was flown to Edmonton for a Heart Catheter surgery. It was then that I finally had a mini-meltdown. I was scared.

Although it was the best and safest thing for Cory to go to Edmonton, it was hard to wrap my head around. How could my little boy who was doing so well now be so sick? How was I going to explain to Molly that we had to leave her at home with her grandparents again while we went back to Edmonton for an unknown amount of time. She was already feeling pretty stressed because I was spending all my days in the hospital with Cory. When I got home at supper time, Molly and I would play together, read books, and get ready for bed. She would fight to stay up for as long as she could keep her little eyes open. I could not get her into bed before 10 or 11:00 on most nights. And when I finally could get her to sleep, it was generally only because I let her fall asleep in my arms or on my chest in bed with me.

Lee and I packed our bags and tried to get a good night’s sleep. On Thursday morning we headed back to the hospital to see Cory off. We had to change our flight because the PICU in Edmonton was no longer sure they had a bed for Cory. As the hours passed by, we were getting pretty discouraged that we would not be heading to Edmonton. The Medi-vac was standing by. The ambulance was standing by. The transport team was standing by. Finally the call from Edmonton PICU came through and they had found a bed for him. Cory was on his way.

Cory had his Heart Catheter surgery on Friday in Edmonton. The doctors found an area of his ascending aorta that needed to be fixed. We were told that normally they find problems like this on kids in their back. Cory’s wasn’t detected sooner because it was in an area that they had never seen it happen before. I guess that’s Cory for you… always has to be a little different than the rest! We had hoped it was something that could be fixed while they had him in the cath lab already. Perhaps a balloon inserted through the vein to expand the blocked area?!?!?! No such luck! Our only recourse is to once again have Cory undergo open heart surgery. While asking any 9 month old to undergo three open heart surgeries in seems grossly unfair, at least we now have a prognosis and a gameplan to correct it. Albeit a grossly unfair one.

Cory is comfortable now. He is sedated (not paralyzed) and resting. He opens his eyes from time-to-time, but he is so stoned from the drugs he is getting that he barely knows we’re there. It’s really hard to see him like that. We just want to hold him again and get our happy little boy back. Surgery is scheduled for Sunday morning (Oct. 4th) at 9:00am. The surgeon is pretty sure that this “simple procedure” will help Cory. He said it is good that we found it. If we didn’t, Cory would have just kept deteriorating.

So now I must get some rest. Cory has a big day tomorrow and I want to be there for him before he goes to surgery. I will try my best to blog tomorrow to let you know how the surgery went. Until then… I thank all of you (again) for your prayers, thoughts, well wishes, phone calls, and emails.

My Favourite Colour is Green

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.

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.

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

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!

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!

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!

Like A Fish to Water

My Goodness! It's been a long time since I last posted anything! I do have to apologize as I know a lot of you have been checking regularly for updates. Turns out having two kids six months apart is a bit of a handful! Let's see if I can bring you up to speed. You may want to grab a snack as this is a pretty long post!

On January 22nd Cory and Molly & I all came home to Winnipeg. My Mom left Edmonton a few days before we did, and Lee left the day before we did. Lee drove through the night and was able to get home before Molly & me. He got the house all warmed up for us and had a few groceries in the fridge for our arrival. I think we can all agree that it was really, really great to finally be home! Molly & I were at the hospital when the transport team came to pick up Cory. We saw him off and wished him a good and safe flight home on the Medivac. He was accompanied by a transport nurse, a doctor, and a respiration therapist. Cory arrived in Winnipeg and was taken straight to the Children's Hospital in the NICU.

Later that day Molly & I took a West Jet flight home. We sent 95% of our luggage home with Lee, hoping to make the whole flight home alone experience a little more effortless. Even with only one carry-on bag, the stroller, and Molly it was still pretty much something I hope I never have to do again by myself. But we managed to get home in one piece. Lee met us at the airport with lots of hugs and kisses.

Before picking us up at the airport, Lee went to visit Cory in the NICU. I was glad that Lee got to see where Cory would be spending his next few weeks. It was getting pretty late by the time we met Lee at the airport, so we decided that instead of going back to the hospital, we would all go pick up our dog from Dave & Sonia's house. It was soooo good to see Jaxon! I was so excited that I peed on the floor! Sonia then proceeded to smack my nose with a rolled up newspaper. I gotta tell you... I learned my lesson and I'll never do that again!

The next day we all headed over to the hospital to see Cory. It certainly was different than the hospital in Edmonton. It took some getting used to with all the different equipment, different nurses, different procedures. The transition from Edmonton to Winnipeg was not entirely smooth. First thing I noticed when we arrived was that Cory was lying on his stomach. I immediately and politely told the nurse that Cory was not supposed to be on his stomach or have any pressure on his chest due to his surgery and the shunt that was put in to help his heart. I was told that they do this all the time with heart babies. I had to ask again (this time not so politely) for them to put Cory on his back or his side as I once again schooled them on Cory's requirements. I asked all the nurses that came near Cory questions that I already knew the answers to just to see what they knew or didn't know about Cory. From the answers I got it looked like it was going to be a loooong stay in the NICU. I don't think they liked Mamma Bear very much after the first day of visiting. The other problem we were facing was that Molly was not allowed in the NICU in Winnipeg. We were so used to carting Molly around everywhere with us in Edmonton, that it was a real hassle not being able to do the same in Winnipeg. This, as you could imagine, made visiting Cory very difficult. I couldn't be there as much as I would have liked and I felt horrible leaving Cory there by himself. Molly & I would generally meet Lee at the hospital at noon when he was on his lunch break and visit for an hour or so. Then we would all meet again at 4:30 when Lee was off work. We would eat supper at the hospital and spend the evening with Cory. Lee and I had to take turns going into the NICU to visit Cory while the other one sat in the waiting room playing with Molly.

Once we got used to the nurses and procedures in Winnipeg things got better. One by one Cory's tubes started coming out. He was weaned off his morphine and other drugs. Things were really starting to look good. However, Mamma Bear had to make a couple more appearances before our stay in NICU was done. They really seemed to want to have Cory put pressure on his chest. I learned that one of the NICU staff was holding Cory up on her shoulder (as if she were burping him) and I flipped! I spoke to the head nurse and again advised that Cory could not have pressure on his chest due to his shunt. I told them that it was standard procedure for babies with Cory's condition. They weren't sure where I got this information from so I told them that the surgeon himself told me the rules. They were still sceptical and told me that there were no orders on Cory's file telling them not to put pressure on his chest. I told them to get me a piece of paper and I would write them some orders myself. They finally conceded and agreed to put up a sign and put in an order on Cory's chart following my wishes. I finally had cardiology talk to them and tell them that I was indeed correct and that it IS standard procedure for HLHS babies not to have pressure on their chest. HA! I win!

Lee & I were very concerned about Cory. He was constantly retching and throwing up after his feeds. We did feel a lot better knowing that Cory was constantly being monitored and watched one-on-one by the nurses. We got a call at home late one Wednesday evening from the NICU. After my heart started beating again I learned that they wanted to move Cory to a ward in the Children's Hospital. I was really upset by this news as the previous day they told me that Cory was not ready to be moved. I had also heard some stories about the wards that made me really nervous to have Cory there. I was told that Cory would not have a one-on-one nurse, that he would not be on his monitors, and that the nurses only check in on him once an hour. So, at 11:00pm that Wednesday night (February 28th) I headed back into the city to be with Cory in the hospital. It was a long long night for Cory and me. It was a lot noisier on the ward than in the NICU. And we had to deal with a bunch of new nurses and procedures and equipment. I ended up spending the night with Cory who was thankfully in his own private room. There was a chair that converted into a make-shift bed. I was cold and tired and miserable... but there was no way I was going to leave Cory alone. I advised his new nurse about Cory's condition and the rules that go along with him. I quizzed her off on what she knew and didn't know about Cory. I then told her that he throws up a lot after he eats and that he needed extra attention as I didn't want him to choke and have no one notice. As I mentioned... it was a long long night.

Lee and Molly came the next morning. Again we had to deal with another transition from NICU to ward. I really do think the transitions are the worst part of the whole ordeal. Things finally started getting better on the ward. I had the nurses "trained" the way I liked them. There were a couple of nurses in particular that I really really liked and felt comfortable leaving Cory with through the night. Otherwise, Lee & I were taking turns spending the night with Cory. I think Mamma Bear only made one (OK... two or three) appearances while on the ward. I certainly got myself a reputation in that hospital! But every time I roared I got better care for Cory. Wait a minute... Do bears roar or do they growl??? I'm not sure. Either way, I got what I wanted! I win again! Woo hoo!

Cory was starting to look really good. He was starting to tolerate his feeds a little better, his sats (the oxygen level in his blood) were looking good, and he had started to put on some weight. Lee and I were VERY happy with his progress. We were finally told on March 6th that Cory would be able to go home. The doctors all took one last look at him and decided that Cory could go home on the following Monday (March 9th). I was so excited! That was only one month after Cory's surgery and he was ready to come home. Lee & I had been gearing up for a lengthy hospital stay but now we were told that Cory could come home. Before Cory could come home I first had to learn a few things to be able to take care of him. Since he was still eating through his feeding tube I had to learn how to insert it incase it came out. I had to do three successful inserts before they would let me take him home. Thank goodness I'm a quick study! I learned how to insert the tube and got myself a passing grade. It was a little unnerving at first... having to stick a tube down your baby's nose and down into his stomach. Cory is not the happiest little baby when I have to do this, but we manage to get the job done. I also had to learn how to give Cory his twice daily needles. I HATE giving him his needles. But I guess if the option is give him a needle or stay in the hospital I'll gladly do what I have to do. Cory is also on a few other medications, but those I am able to give him through his feeding tube.

We ended up bringing Cory home on February 10th. It was way too slippery out on the 9th and I didn't want to risk the highways incase we had to rush him back to the hospital. It was the best feeling ever to have both my kids home with me. It was a big adjustment having Cory home. After all... I didn't have the nurses to change his diaper, remember to give him his meds, and hook up his feeding tube. I don't think I took my eyes off of Cory for the first few days. I was constantly looking to see if his colour was right, if he was too cold or too warm, if he was eating properly, if he was choking or retching or throwing up... Lee's Mom came to help out and ended up spending a lot of time entertaining/distracting Molly while I tried to figure out Cory's schedule and charts and moods. It was such an odd feeling. My son was 5 1/2 weeks old and I was just bringing him home for the first time. I felt like I barely knew him. I was finally going to get to be his hands-on Mommy. I wasn't sure if I would be able to do right by Cory and take care of him properly... but it turned out it was the same as taking care of Molly. I just had to remember way more stuff about Cory and his condition and medications.

We had a little bit of a set-back on Friday the 13th. Cory had lost a bunch of weight, was somewhat lethargic, and had contracted a virus. I took him to the Heart Clinic for a check-up and they told me that Cory had to be re-admitted to the hospital. UGH! I was so upset. But it was best that Cory be with the professionals incase something were to happen to him. It was very frustrating having to be back in the hospital and having to go back and forth with Molly again. At least on the ward Molly was allowed to visit with me. I again set up her playpen in Cory's room and we spent the days being with Cory. This time our hospital stay was much shorter. We busted out of there on Wednesday the 18th. Mamma Bear only made one visit to the hospital during that stay. I gotta tell ya... I love Mamma Bear. She really knows how to get things done!

So to sum it all up, Cory has been home for a couple of weeks now. We've had several appointments with doctors and cardiologists and pediatricians. Everything is coming along great. Molly and Cory are over their colds (Yay! No more snotty, runny baby noses!) and Cory is steadily putting on weight. We have managed to get a bit of a routine going during the days and life is not as hectic as I thought it would be being here all by myself with two beautiful babies. I actually do get some quiet time to myself. Well... I guess if you call doing laundry and washing baby bottles and preparing medications quiet time, then I do get some.

The feeding specialists told me that Cory likely would not take a bottle until after his second operation. But my little super star is already doing quite well with the bottle! He took to it like a fish to water! So now he takes about 1/2 of his formula through the bottle and the rest through his feeding tube for three of his six daily feedings. Way to go Cory!! I'm hoping that he will be totally bottle fed in no time.

Molly is doing terrific! She loves to sing to her little brother. She loves to play with her toys and watch the Disney Channel. She loves to dance and she loves to play peek-a-boo. She LOVES books and will tell you some great stories if you let her. Molly finally cut her first tooth! She actually has two teeth coming in now and she likes to bite your fingers with those sharp little things. Molly is growing like a weed and wants so badly to walk. She is trying to crawl, but I don't think she is too interested in it. She loves to stand up and hates to sit down. I think she's going to forget about crawling and go straight to walking. Boy... won't my life be fun then! Molly has a mischievous side to her and she always keeps me on my toes. We have a walker for her and she tears around the house like nobody's business. She spends hours in her walker and loves to chase the dog around the kitchen table. And bath time for Molly is the best part of the day! She splashes in the tub and giggles and grins like she was born to be in there. I think she's really going to enjoy our pool this summer!

Jaxon (our dog) is doing well. He is not too happy with Lee and me for bringing another baby home. He is always vying for our attention now. We do try to spend as much time with him as we can, but the poor little fellow does need a little more attention and playtime. I think as the weather keeps warming up we'll be able to spend a lot more time playing outside with him.

As for me... I'm doing great! I love having my babies home and I love being a Mommy! I still haven't had a chance to get to the grocery store since I've been home from Edmonton, but thanks to all our good friends and neighbours and Play Group friends we are not starving. Thank you to everyone who has sent over meals for Lee & me. They are delicious and very handy to have on hand. Thank you, thank you, thank you! And thanks to everyone who has sent gifts over for Cory and Molly. I cannot thank everyone enough.

Lee is also hanging in there. He loves having the babies home too, but I think he is missing riding his horse. Oh well... there'll be plenty of time for that after Cory's second operation!

We look forward to everyone meeting Cory. We welcome visitors, but if you do want to visit please ensure that you feeling healthy. We can't have Cory in contact with anyone who may be ill as this could be very detrimental to Cory and land him back in the hospital.

Well... I guess I should leave it at this for now. I will really really try to post more often. It should be a lot easier now that I've brought you all up to speed on the past month and a half. Feel free to call or email. And as always I look forward to all of your comments!

Take Care!
Kristine & Lee
883-2003
kmyers@mts.net

Yes! We're Back!

Hello everyone!

Yes! We are back in Winnipeg! We all got back at various times on Thursday.

We have been so busy since we got back to Winnipeg that I haven't had time to write yet. We have been sleeping in (Molly likes to sleep in, so Lee & I were taking advantage of it too), visiting with friends and family, and going to the hospital.

It's a little tougher to get to the hospital now, as it's not just a 5 minute walk across the street. We can't go four times a day like we were before. And since they don't let Molly into the NICU here in Winnipeg, it really makes things tough to see Cory.

I promise I will write more later. Lee is heading in to work this afternoon, so we are going to stop by the hospital before he goes in.

Again... I promise I will update the blog and let you all know how Cory is doing very soon.


To the Playgroup Girls... Yes. I am planning to go to playgroup tomorrow. Molly & I can hardly wait to see you all!

I'm Thinking Thursday!

So it seems that the doctors have decided that we can take Cory back to Winnipeg! He will be flown to the Children's Hospital on Thursday, providing that they still have a bed available by then. So far everything looks good, so hopefully we'll be home very very soon! Lee is going to be driving out on Wednesday morning. He is hoping to get home before me and get our home ready for Molly and I. It is going to be sooooo good to get home!

I am sending most of my luggage home with Lee in the truck. That way I don't have to lug several bags through the airport, all the while trying to keep an eye on Molly. I am also sending the laptop home with Lee, so I won't be able to blog again until I get home.

I have to keep this one really short as I have to finish packing. There's not much left... but I have to get it done because Lee wants to leave early in the morning.

So I guess I'll see everyone very soon! Until then...

Whispers of Winnipeg

It seems it's been a few days since I've written. I do apologize... but Lee & I have been spending more time with Cory at the hospital over the past few days. Cory is doing very well and looks good. It is so wonderful to be able to hold him and to have him gaze at us with his big brown eyes. He is very alert and loves to be cuddled and talked to.

Cory has a couple of little "kinks" that need to be worked out (nothing serious)... and there are whispers going around the NICU that we may be coming home this week! YAY! If they decide that Cory is ready, he will be flown on a medivac plane back to the Children's Hospital in Winnipeg. Molly & I would take a West Jet flight back to Winnipeg, and Lee would drive back and meet us at home. Hopefully Lee & I will find out tomorrow morning if we will be making the journey back home. We have all of our fingers and all of our toes crossed!

Cory is now basically wire free. He had his pace maker wires pulled out this morning. All he really has left is his PIC line and the small feeding tube in his nose. He is being weaned off most of his medications and seems to be tolerating it all very well.

You will notice in this picture that you can actually see some baby now... not just a bunch of wires and tubes. He's a good lookin' little fella if I do say so myself! Notice the bald spot on the top of his head from where they had to shave it to put his IV in. But I'm happy to report that he is already growing his hair back.

Molly mentioned to me that she is a little disappointed that she's not getting very much mention on this blog. So I better write a little bit about her too! Molly is very ready to go home. She doesn't mind visiting her brother in the hospital, but she would rather be at home playing with her toys and her dog. She had gotten so big and had changed so much since we've been out here! She turned 7 months old on Saturday and was 26 1/2" long and 17 lbs. 9 oz. She loves to sing and loves to babble. She loves taking her bath in the big tub and LOVES to splash! She has so much fun splashing in the tub that she gets mad when you take her out to dry her off!

Molly is an exceptionally good baby. She loves it when we go outside and loves to look around at everyone and everything. She sometimes plays shy with strangers, and has the cutest look when she lowers her head and averts her eyes from people.

She LOVES to eat. She can't get enough of her cereal and her fruits and vegetables. Creamed corn is an absolute favourite of hers. She is starting to resist her nap time... but in the end Mommy always wins and Molly ends up going down for at least a short cat-nap.

Molly loves it when Daddy tosses her in the air and bounces her. She squeals with delight and can't get enough.

Molly and Grandma have had such a wonderful time bonding with each other since we've been here. Since Grandma gets up early, she has had the pleasure of playing with Molly until Lee & I get our lazy butts out of bed. I have to admit... Lee & I have certainly taken advantage of our built in babysitter and have enjoyed our leisurely mornings lazing around until 9:00 or later.

Grandma has absolutely made our stay out here more bearable. She has taken care of Molly so Lee & I could have more time to spend time with Cory after his surgery. And I know that Molly has enjoyed her time with Grandma too. Molly could often be found giving Grandma sloppy wet drooly kisses or pulling on her hair (which in Molly-land means "I love you!") I hope that Molly & Grandma will always have a special bond because of their time together in Edmonton. Thank you so much Mom for being here with us!

Well... I'm going to sign off for now. The sooner I get to sleep, the sooner I find out if I'm going home! I will let you all know what the plan is as soon as I find out.

Take care! And hopefully we'll see you all very soon!

Oh! What a Feeling!

Just a quick update! Cory had his chest tube taken out this morning at about 8:30. He is looking good and doing very well. And I finally got to hold my little baby boy! It felt so good to hold him and comfort him after so long. He fell asleep in my arms and seemed perfectly content there.

Lee speaking here. I on the other hand did NOT get to hold my boy as my wife is a big fat baby hog. She thinks maybe in the spring. She CLAIMS that she gave me every opportunity to have my turn but she also told me we could go back to separate bank accounts if I didn't like the joint one, and we all know how that turned out.

Cory's Big Day

Hi! Sorry I haven't written for a couple of days. To be honest... I think the stress of everything finally hit me and shut me down for a day and a half. The day before yesterday all I did was sleep. And I didn't do too much yesterday but stick around the apartment. But I think it was good for me since I feel so much better today.

Cory has been moved out of the PICU and back into the NICU. Last night when I saw him he looked like he was in pain. I don't know for sure if he was or not... but it tore my heart apart. I couldn't stop the tears from flowing down my cheeks. I wanted to help him and comfort him so badly, but there was nothing I could do. The nurses assured me that he was fine, but he just had this look on his face that seemed to be crying out for his Mommy to make everything better. I really hate the feeling of utter helplessness. There is no worse feeling than not being able to make your child feel better and not being able to comfort them.

This morning, however, Cory looked much better. He looked much more relaxed and rested. His colour was better and his face looked de-stressed. He was awake and he didn't look so drugged up on his Morphine. His eyes seemed to follow us like he couldn't get enough of us. Lee & I were there when the doctors did their rounds and we were so happy to hear what they had planned for him for the day.

The first big step for the day was that Cory was extubated. The respiratory therapists came and took out his breathing tube. I think Cory was so relieved to have that thing out of his nose! He is now breathing on his own. When the respiratory testing came back the results indicated that Cory seems to be doing better without the ventilator than he was doing on it!

Secondly... the nurse practitioner came and took the IV out of Cory's neck. They were no longer giving him any medication through it, so there was no need for it to be there. I was so happy to see that one go. I didn't think that one looked too comfortable.

The third step was taking out his catheter. Again... I think Cory was happy to have that one gone! But now we have to do more diaper changes. Not a bad trade off if you ask me!

This morning the nurses also capped off his pacemaker wires. The wires are still in his chest, but they are no longer hooked up to the pacemaker. So basically Cory is now breathing own his own and making his heart beat on his own. He's such a little trooper!

They also decided to start feeding Cory today. He was getting fed through and IV, but now he is getting the same kind of formula as any other newborn. Granted... he is getting it through a small tube in his nose that goes straight to his intestines... but at least he is finally getting fed!

The doctors were also thinking of taking out his chest tube today, but as of this afternoon they decided to postpone it until tomorrow morning. That will be a big relief when that tube is out because that one is likely causing Cory some discomfort. Shortly after his chest tube is removed I will FINALLY get to hold him again. I was really hoping it would come out today, but I guess it's better to wait one more day to make sure there is no more fluid in his chest that needs to be drained. Tomorrow will be here before I know it!

Grandma and Molly went to visit Cory today too. I still don't think Molly knows that the little guy will eventually be coming home with us, but I'm sure once we all get home she'll be more than thrilled to have her little brother there with us! Lee still hasn't told her that she's going to have to share her pony with Cory though. Not too sure how she's going to like that!

So that was Cory's big day! Lots of good things happened to our Little Superstar! He is doing quite well and we are so excited and proud of him.

I want to thank everyone again for all your thoughts, prayers, and well-wishes. And thank you so much for all your comments and emails and phone calls. I do apologize if I haven't replied to emails, but it has been such a busy busy week and a half since Cory was born. Thank you for taking the time to check our blog and look for updates. Hopefully one day soon I'll be able to write about our homecoming! We miss everyone back in Winnipeg and can hardly wait to get back home!

Cory in the PICU

This morning Cory had his chest closed. Even though the surgery was a walk in the park compared to last Friday's surgery... it was still hard to walk out of the PICU and leave him there while they prepared to operate on him. The operation took about an hour, including prep time, and I am happy to report that Cory is doing very well.

He has an external pacemaker helping his heart regulate itself right now, but his heart should take over soon and not need the pacemaker any longer. He has been under sedation for most of the day, so he is back to just laying there with no movement. I'm not sure that when I go back for a visit tonight if he will be awake or not. Little guy's been through so much though, that it wouldn't be the worst thing if he got a good night's rest.

The doctors and nurses have been tweaking his monitors a little, and adjusting some of his medications. But all-in-all, Cory is doing exceptionally well. They are hoping that he will be moved back to the NICU (Neonatal Intensive Care Unit) tomorrow. And hopefully on Tuesday, if all goes well, he will have his breathing tube removed. After that it is just a matter of weaning him off his medications and getting him stronger.

As promised, I am including a couple of pictures. These pictures are from Friday, after Cory's surgery. He has alot of tubes and wires and monitors on him... but it really looks worse than it is. The pictures may be difficult for some people to look at, so be prepared.

That's My Boy!

This morning while Lee was sleeping in I decided to go over to the hospital early to visit Cory. When I arrived, the nurses updated me on Cory's progress over night. He had done really well and was very stable. They said they had to make a couple of minor adjustments to his monitors over night... but nothing serious. I had fully expected to see Cory swollen this morning when I arrived, but was pleasantly surprised to see that he still looked really good, really pink, and really un-swollen. The nurses told me he could still swell later in the day, but as of 7:00 Saturday evening he still has not swollen. That's my boy!

I was also very surprised this morning when Cory opened his eyes and looked at me! I was so shocked! I had assumed that he was still in a state of paralysis (due to the breathing tube), but I was wrong! Apparently after he came out of surgery he was never paralyzed, only heavily sedated from surgery. I can't tell you how much joy and pride and overwhelming relief I felt. I finally got to see what colour his eyes are! I immediately called Lee and told him he had to come to the hospital. He rushed right over and I could see the relief and joy wash over him too. The nurses told us that they actually had to sedate Cory a little more because he was really waking up alot. That's my boy!

I stayed at the hospital for a couple of hours this morning just watching Cory. I loved to see him move just a little and open his eyes and look around. Granted... he's still on medication that's making him a little dopey, but what a different feeling it is watching him moving instead of just laying there. And when I hold his hand he gives me just the tiniest squeeze to let me know he loves me. That's my boy!

The doctors told Lee & I this morning that since Cory is doing so well they are going to close up his chest on Sunday morning (January 11th). Then they can slowly start weaning him off his ventilator and his medications. That's my boy!

So I think I'm going to keep this short for today. I'm exhausted and really need to get some rest. But first I'll go back to the hospital to see my boy.

I will try to post some pictures of Cory in the PICU in my next update.

Take care!

9 out of 10

After a very long day of waiting, Cory finally made it out of surgery. The surgeon came to talk to Lee & I at about 3:00 this afternoon and told us that Cory had done amazingly well. There were no complications during surgery and he said that Cory was expected to make a full and speedy recovery.

We had to wait another hour before we were able to see Cory. The nurses and doctors had to transfer him from the OR into the PICU (Pediatric Intensive Care Unit) and hook up all his monitors and medications. When we finally saw him, we were so happy and so relieved that he looked so good.

A PICU doctor came to update us on Cory's progress and she also said that he was doing quite well after his surgery. His blood pressure is good, his vitals are good, and he is on less medication than he was before. I asked her to rate him on a scale of 1 to 10... with 1 being not so great and 10 being very very good. She gave him a 9 out of 10. I can't tell you how proud I was of my little fellow for coming out of surgery with such flying colours!

The doctors have informed us that the next 24 hours are critical... but they are confident that everything will go smoothly for Cory. Cory is still hooked up to his breathing tube and is still paralyzed, but he will be weaned off of the ventilator over the coming week. The doctors have the skin on his chest sewn up, but his sternum is still open. This allows for swelling to occur, which is normal after open heart surgery. They hope to close his chest on Sunday or Monday.

So as you can imagine, Lee & I are very proud and very relieved parents. And once again... I have to thank everyone for all your thoughts and prayers and well wishes. They certainly have helped our little guy pull through his surgery!

And a big thank you to my playgroup girls in St. Adolphe for the special necklace! It is so nice to know that you are thinking about us! Thank you!

Until next time...

He's in!

Lee & I went to the hospital this morning at 6:00am to wait with Cory before his surgery. The nurse told us that he had a very good night and was all ready to go for his surgery. We had been told the night before that they would likely come and get him to prep him for surgery at about 7:00am or so. 7:00 rolled around and no one was coming for Cory yet. 7:30 came and went too. Lee & I were starting to get a little worried, but we just assumed that things were held up a little.

At 7:45 the anesthetist came out of the OR and asked if we had heard if there was a bed open in the PICU yet. (This is where Cory will go after his surgery.) She said that the OR hadn't been advised there was a bed available, and if this was the case, Cory's surgery would be cancelled. She went off about her business and left Lee & I sitting there, not sure what to think. We had be gearing up for Cory's surgery all night and all morning, and now in the blink of an eye everything may be cancelled.

We continued to wait. It was now 8:00 and it had been a long morning of clock watching and waiting. The minutes seemed like hours. Finally the doctors came to do their rounds. The neonatologist and the surgeon who would be performing Cory's surgery were both in the group. They came over and advised us that everything was set to go ahead, as they definitely had a bed in the PICU for Cory. I can't tell you how relieved we were!! It's amazing how many emotions a person can go through in such a short period!

Finally at 8:30 the OR team came out and got Cory ready for surgery. They checked all his monitors, conferred with each other, then unplugged all his machines and apparatus so he could be wheeled into the OR.

Lee & I got to wish Cory good luck and give him a kiss before he left for surgery. I can tell you that I have NEVER felt so helpless in my life. Watching them wheel Cory into the OR was one of the most heart-wrenching moments of my life. Knowing that he is going to go through a very complicated, very long surgery tore me apart. But knowing that this operation is going to save his life gave me a great sense of relief.

I know that Cory is in good hands. I know Dr. Ross is one of the best pediatric cardiac surgeons in North America. I know that my son will come out if this with flying colours.

So now we wait. We were told that the surgery will likely take between 4 to 6 hours. Lee & I came back to the hotel to rest and regroup. When we walked into the hotel room, Molly's little face just lit up and she let out one of her super squeals. Thank God for her. She will certainly be a welcome distraction for both of us while we wait.

I will try to let everyone know how things went later on this afternoon or later this evening. Thanks for all your prayers to date... and please keep them coming over the next few hours.