"Axel's oxygen levels kept dropping while he was asleep so we are now in the PICU. He is sleeping at the moment but his breathing is less laborious. After surgery tomorrow for his port he will come back to the PICU and start his chemo in here. Once they know he is ok, he will go back upstairs."
3
What a tiny room. Nothing compared to the room he was in upstairs. maybe 10x10? I'm not a very good judge of measurement but it was a super tiny room in the PICU. The bed was sort of off centered to the right, a lounge chair and a rocking chair to the left. Counter with a small sink, cabinets, and drawers. The toilet was even in a cabinet. Pretty ingenious actually, but nothing I'd ever use. Off to the right was the medical paraphernalia. Didn't leave much room for anything else. This room was going to be my "home" for the next 45 days.
I can remember sitting in the room in the lounge chair, looking at Axel lying in that bed, holding his little hand. We kept the TV on cartoon network so he wouldn't miss Teen Titans. Sometimes when we talked to him there would be a little bit of movement in his hands or an ever so small nod of his head. I even saw a tear fall when I told him that I loved him, not to be afraid and that I was right here with him. That broke my heart because while we were told he would have no memory of his sedation, he could hear everything we were saying to him.
I know I was out of work for a while. I can't remember how long, maybe a week before I would slowly make myself go for a few hours a day. It killed me to be away from the hospital not knowing if something were to go wrong, would I get back in time? Working helped a little, but I could tell that people didn't know how to act around me. They were afraid to talk to me. I get it. I totally get it. When you see someone what's the first thing most people say? "Hi!, How you doing?" Well, you kind of think twice about saying that to someone who just got told their kid has cancer so instead, you say nothing at all which can at times be even worse. If you're reading this book because you want to understand what people go through who have a child with cancer, know this. TREAT US NORMALLY. Don't ignore us because you don't know what to say. Say hi to us. If you don't want to ask "how are you" then say perhaps "How are you TODAY?" Maybe just say "hi" if you don't know what to say, just don't ignore us. Sometimes all we need is one person to acknowledge us to make us feel better about being there. If we go back to work it's for 2 reasons. 1. We have to. 2. We need to feel some type of normalcy in our lives that have been so rudely and abruptly turned upside down. Don't be afraid to talk to us and don't be afraid to listen either but be prepared for either a wealth of information or a short quick response.
When I returned to work I had so much anxiety walking through that door. Don't get me wrong, the people I work for are absolutely wonderful and are taking such wonderful care of me while I am missing time from work. I just didn't know what kind of reception I was going to get, how I was going to be able to handle that one person that came out with the "c" word instead of leukemia. I still hadn't come to grips with Leukemia. Never mind someone calling it cancer. I was afraid that if someone did that I would totally lose it.
It was nice to see familiar faces and everyone was so wonderful. At first, it was just an escape for me. While I did answer the phones and try to do a little work, I mostly just breathed. Over the course of time, I did do more and more but I really didn't spend too much time there. Generally, just a few hours and then I rushed back to the hospital. With Axel in the PICU, there was no telling what would or could happen so I didn't want to stay away too long.
This was going to be a long road of uncertainty. Bill and I just sat in the room in silence, we would stand by his bed, holding his hand, whispering to him, giving him kisses on his hand. Every little bit we felt was encouraging to him to know that we were there. I slept in the room with Axel as I was too afraid to sleep anywhere else. The beeps would start in the middle of the night and wake me up instantly. There were a few nights in the beginning that Bill and I both spent the night in the room with Axel. Two of us sleeping together in the pullout chair bed. Anyone who has ever had a child at CCMC knows that they are barely big enough or comfortable enough for just one person. We made it work because we weren't about to leave any time soon.
Watching Axel fight for his life was the most grueling, heart-wrenching thing we have ever had to go through. Here was our little boy, sedated, a tube down his throat, tubes in his chest, catheterized and swollen to 5 times his normal body size from all the fluid. I've never prayed so much in my life. I've always been somewhat religious as I would go to church when the mood hit me (yes, I know that doesn't sound very nice), I believe in God, Jesus and that he died for our sins. I'm just not overly religious. I try to do good and to be a good person and I think that's really important. Here I was, praying and praying day in and day out to God thinking he's not going to listen to me - I only talk to him when I need his help. Still, I needed to give it a whirl. I felt good and it calmed me in a way and Lord knows I needed "calming".
Axel had a lot of issues going on when he was in the PICU. The fluid in and around the lungs, typhlitis, an enlarged spleen, a strain on his heart and a scrotum the size of a grapefruit. He was supposed to go to the OR to get his port put in for his chemo, have a bone marrow aspiration to find out the exact makeup of the leukemia and I'm sure there was more than that but our brains have been in a blender from day 1. We listened to everything we were being told but some just slipped through the cracks. One thing for sure though it was enough that every night we would pray before we went to bed that we would have just one more day with him and every morning we would wake up wondering if this was going to be our last day with him. It's a thought that no parent should ever have but it consumed us every waking hour of every single day.
It still does.
When I returned to work I had so much anxiety walking through that door. Don't get me wrong, the people I work for are absolutely wonderful and are taking such wonderful care of me while I am missing time from work. I just didn't know what kind of reception I was going to get, how I was going to be able to handle that one person that came out with the "c" word instead of leukemia. I still hadn't come to grips with Leukemia. Never mind someone calling it cancer. I was afraid that if someone did that I would totally lose it.
It was nice to see familiar faces and everyone was so wonderful. At first, it was just an escape for me. While I did answer the phones and try to do a little work, I mostly just breathed. Over the course of time, I did do more and more but I really didn't spend too much time there. Generally, just a few hours and then I rushed back to the hospital. With Axel in the PICU, there was no telling what would or could happen so I didn't want to stay away too long.
This was going to be a long road of uncertainty. Bill and I just sat in the room in silence, we would stand by his bed, holding his hand, whispering to him, giving him kisses on his hand. Every little bit we felt was encouraging to him to know that we were there. I slept in the room with Axel as I was too afraid to sleep anywhere else. The beeps would start in the middle of the night and wake me up instantly. There were a few nights in the beginning that Bill and I both spent the night in the room with Axel. Two of us sleeping together in the pullout chair bed. Anyone who has ever had a child at CCMC knows that they are barely big enough or comfortable enough for just one person. We made it work because we weren't about to leave any time soon.
Watching Axel fight for his life was the most grueling, heart-wrenching thing we have ever had to go through. Here was our little boy, sedated, a tube down his throat, tubes in his chest, catheterized and swollen to 5 times his normal body size from all the fluid. I've never prayed so much in my life. I've always been somewhat religious as I would go to church when the mood hit me (yes, I know that doesn't sound very nice), I believe in God, Jesus and that he died for our sins. I'm just not overly religious. I try to do good and to be a good person and I think that's really important. Here I was, praying and praying day in and day out to God thinking he's not going to listen to me - I only talk to him when I need his help. Still, I needed to give it a whirl. I felt good and it calmed me in a way and Lord knows I needed "calming".
Axel had a lot of issues going on when he was in the PICU. The fluid in and around the lungs, typhlitis, an enlarged spleen, a strain on his heart and a scrotum the size of a grapefruit. He was supposed to go to the OR to get his port put in for his chemo, have a bone marrow aspiration to find out the exact makeup of the leukemia and I'm sure there was more than that but our brains have been in a blender from day 1. We listened to everything we were being told but some just slipped through the cracks. One thing for sure though it was enough that every night we would pray before we went to bed that we would have just one more day with him and every morning we would wake up wondering if this was going to be our last day with him. It's a thought that no parent should ever have but it consumed us every waking hour of every single day.
It still does.
No comments:
Post a Comment