When the bottom fell out (Part 2)

It was a long, long ride to Iowa City. The ride from the pediatrician’s office to the hospital was my first in an ambulance. This was my second. I rode along with Cole and the medics. PJ followed in our car. I was nervous to have him driving on Interstate 80 while he was scared for his son’s life and trying to follow and keep up with an ambulance. I felt so guilty for leaving Chaz behind. I barely explained to him what was going on and I know the day had been extremely traumatizing for him. I think I hugged and kissed him goodbye when he left the E.R. with my mother. Luckily, he loves his Oma & Papa and thinks it’s a treat when he gets to spend time with them. Cole seemed to have stabilized. He actually slept the entire way there – a true blessing. I talked a little to the medics. They were curious about CF and what it was. I told them what I knew and they complimented me on my knowledge of the subject. That’s just what you do when your child or loved one has a disease - learn everything you possibly can about it. And I still have so much more to learn. At one point the medic got out some paper work that I needed to sign. It stated how much the ambulance ride would cost and that I would be responsible for paying it. Knowing that no matter how much it cost, we would be making this trip, I tried not to look at the amount. I still caught a glimpse and saw that it was not in the hundreds but the thousands. I tried to push it out of my mind – it was irrelative. But I did finally inquire about insurance and if it normally covered trips like this. The medics assured me that it would and I let those thoughts leave my mind again so I could focus on what was important.
The University Of Iowa Hospital is huge. The ambulance took us to an area of the hospital I had never even seen. Even the medics seemed a little confused about how to get to where we were supposed to go. I think someone showed up to take us there or told us where to go – through corridors and hallways, elevators and double doors. I wondered if PJ would ever be able to find us. We had to walk by so many people on the way. It’s horrible to see their faces when they see a tiny baby on a gurney being wheeled in by medics. I tried to avoid making eye contact with them. Afraid if I did I would let out a horrible scream or just fall into their arms. Finally we ended up in the pediatric inpatient unit. We were brought into a room across from the nurses’ station. Again the room filled with medical staff. Identification bracelets were placed on both Cole and me. He was again being detached from some machines and attached to others. Cole was placed in the “cage” (a crazy crib with bars all over and things hanging around it and above it) that they use in those places. To my relief they left the sides down so I could get to my baby if I needed to. I stood next to him and a young girl started asking me questions. After I had answered a couple questions that I had already answered that day Cole began coughing and fighting for breath. This girl continued asking me questions (stupid stupid questions I have to add!) and was waiting for my response. When I realized that she only glanced over at him momentarily and back to me I lost it yet again. “Do you think we could focus on taking care of my baby before we do this?” I said in a nasty but desperate voice. She got my message and started tending to Cole but she managed to slip in a “you’re a crazy b” glance my way. I hated feeling so out of control but nothing was going to stop me from doing what I thought needed to be done for my child.
Again they got Cole stable. Even when he was stable it was absolutely horrifying to watch him breath. His chest was retracting - something I had never seen anyone do. Something I hope you never see – especially a tiny little baby. It looked like something out of a science fiction movie. They drew blood to test and hooked him up to an I.V. After a while the resident came back in to talk to us about what was going on with Cole. You should have seen my face when he told us that his illness had nothing to do with his CF! I was completely flabbergasted. Cole had Para influenza ~ A very common bug that goes around. We were told that because he was so young his lungs couldn’t handle it as well and that is why he was having such a difficult time. I still have a hard time with this. A part of me will always believe that his treachea malaysia and CF had to of complicated it and caused it to be the horrible mess that it was. We’ll never really know.

Those 3 days are so blurry. I know once Cole was doing okay and we were settled in our room they gave me a tour of the floor. The nurse said “Since you will be spending time up here”. She meant since Cole has CF and this is where he is treated she expects that we will be coming for stays often enough that I had better get to know the place. Was this really what my life was going to be like? Would I one day find that me living in my child’s hospital room is normal?

I didn’t like leaving our room. It was hard to be out of arms reach of Cole at all ~ Afraid he’d be unable to breathe and need suctioning. The little girl next door cried a lot. It was a cry of pain and so heart wrenching to hear. A boy down the hall was recovering from open heart surgery. Another little boy had been wheeled in during the middle of the night after a surgery of some kind. His father and 3 little siblings were in tow. I had to go to the kitchen for something and ran into them. The floor was at full capacity. Sick/injured children were everywhere. I couldn’t handle seeing them and their families and the only way to avoid it was to stay in our room with the door shut and the curtains drawn. I wonder if I will ever be stronger – if life will thicken my skin enough that bearing witness to other people’s living nightmares won’t be enough to make me run into our room to hide and cry??? I hope not.

My mom came up and stayed with us the second day. We wanted to try and keep Chaz’s life as normal as we possibly could so PJ went home the second night and Chaz got to sleep in his own bed. Having my mom there was huge! She even stayed up with him that night and let me sleep. In between treatments, medicines, diaper changes and feedings it was pretty much just sitting and watching Cole breathe – in and out – in and out. Each time another agonizing victory. I kept waiting for the retracting to stop but it didn’t. It took months for that to no longer be visible. It even changed the way it looked as he grew. It was a daily reminder of just how fragile he was and where he’d been. The congestion took even longer to go away. He spent most of his first year of life congested. I urged the doctor assure us that Cole would be okay. I needed him to tell me that I would be taking Cole home with me and he would be fine and he did. With that I was able to come back from that place I went when I thought I was going to lose my son. I came back – but I will never ever be the same. That was the day the bottom fell out. From that day forward I have ALWAYS been aware that it can fall out at any time. And no matter how good I think we’re doing I am always waiting for it to fall out again.