|Zack and Auntie Libbie in healthier times|
I was able to reach my parents in the Dominican...they went to the lobby to read emails on the hotel computer. Internet access was difficult, but they now realized that we were at SickKids. The one time that they decide to stay on vacation for a second week, was the time we needed them the most. They felt so awful, and while I wish I had their help for Ty and Jayden- we were surrounded by neighbours and amazing friends who all stepped up to help the kids have fun while we were gone. I missed the boys terribly, but I also knew that they were well taken care of in my absence.
Zack's saturation (oxygen levels) were good but his white blood cell count came back high. There was an infection and we were hopeful that the antibiotics that were chosen, would start to work. During the day, we gave Zack Tylenol every 6 hours for his fever and did frequent ventolin masks, where my amazing son would actually HOLD the mask to his face himself! He was so used to doing these masks, twice daily at home, that he had given up that fight long ago. In fact, he and I had an arrangement. He could chew the tubing WHILE he held the mask on! The nurses and doctors thought it was so brilliant (I knew that he was).
During this day, we had doctors through our door every half hour, so there was no catching up on sleep for either of us. They were all trying to find some ideas about whether the antibiotics would work to improve Zack's lungs or whether it was viral or even if it was aspiration (he would get aspiration pneumonia from any liquids,including saliva that would go into his lungs and not down his esphogus). He was getting IV meds of the ones we usually used to get him healthier, in fact, I recommended one that they hadn't thought of. They started to question a lot about the fact that I had had a strep infection and that Jayden had also been sick. I told them Jayden was on Tamilflu, an antiviral, so maybe that would work for Zack? I think they were thinking that it was likely viral and would do a swab when we got a room. That would tell us if the antibiotics were going to help.
I was secretly hoping that during this visit, we could get some experts from the respirology clinics who could help us keep Zack healthier, longer. It was with each hospital visit, that he would get weaker. We were now up to our 4th admission since October. I had my speech memorized at this point- I knew what I had to say to get the experts to listen and to help figure this out. He was a complex kid, but not complex "enough" to be included in the multi-approach team at SickKids. I just wanted answers. We thought that his GTube would have helped with the aspiration issues...but since he still LOVED to eat pudding and thickened oral food, we still had a small risk he would aspirate on that food. The last thing I wanted to do was take away oral feeding from him...we had worked so hard to get where he was and he loved to feed himself. It was such an important part of his development! But...we needed a way to stop him from getting sick in the first place, and strengthen his lungs- what we were trying was not working. It was not only his lungs that worried everyone, but it was his heart as well. On our last cardiac exam, it had come to our attention (by a total devastating surprise), that his heart defect had in fact left a residual problem. The connection from the left pulmonary vein (going to between the heart and lung) was not only obstructed, but there was actually no connection at all. Our precious son was really only functioning with one right lung....leaving him more vulnerable than ever.
The day was long and still no sign of improvement. There were moments of playing and we would try to snuggle and nap when we got some peace. The TV wouldn't accommodate our Elmo videos...one more reason we needed to get upstairs to our own room. We waited patiently for a room, but I was getting annoyed. I wanted us to get on a floor where they would take better care of Zack's needs, have all of his 3 binders of history and we could have just a bit more dignity and privacy (there was a glass wall to our ER room....and I might even get to shower.
It wasn't until about 3am the next day that we were taken upstairs to the floor and given our room. Zack and I lay together in the bed, with arms around each other, trying to get a hour or so sleep before rounds would begin.
Facebook post from that day:
Man, I miss my boys at home! Thanks Smita Malik Nayak for your help today with Ty! Thanks to Denise Warriner for lunch and a great visit, Lorenzo Walker for the visit and Libbie Oag for snuggling with Zack now so I can take a break!