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!
Tuesday, October 20, 2009
Thursday, October 8, 2009
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.
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.
Saturday, October 3, 2009
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.
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.
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