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.