When the bottom fell out (part 1)

I have to be honest I cannot really remember what was happening or how I was doing in the time between the diagnosis and his first illness. I thought I was doing really well at the time but I know none of it had really become near a reality yet. It was not enough time to fully process even what the disease was ~ not to mention the fact my newborn son had it. So I can say with certainty now I was nowhere near being okay! I think I was just hanging on as tight as I could to hope and a belief that I was still going to wake up or someone was going to tell me that Cole would be perfectly fine. I was also still holding on to the belief that I could deal with this without completely falling apart.

My memory is probably pretty distorted. But this is the way things seem now, looking back. Those first days, weeks we had so much support. People were truly affected by our news. We received hundreds of dollars worth of gift cards for food and gas and even cash from Pj’s coworkers. It was truly amazing how much people cared and wanted to do something to help us out. We received gifts, cards and well wishes from friends and family. We were told we were added to numerous prayer lists. One of my girlfriends had a baby about a month before us. It was also their 2nd. I remember hearing how hard her husband (someone I barely knew) was taking the news. It was the stories like this that touched our hearts. The sympathy and compassion of our family, friends and community was amazing and overwhelming. The greatest gift I was given during that time was Jenny. Out of nowhere one afternoon right after the diagnosis she knocked on my door. She smiled, teared up and hugged me. She knew exactly what I was going through and without her even saying a word I felt that. Even though we hadn’t talked in years she knew what I needed. You see her son was diagnosed with CF earlier that year. Her story and “plan” are quite different from mine though for many reasons. (Sorry Jen – you’re getting talked about yet again!!! If you see 2 posts ago – it is Jenny and Jenny’s family that I am talking about and to. They have been through and continue to go through more challenges and loss then I can ever imagine ~ They deserve our prayers and admiration. They are truly amazing and strong!) One of our differences is that her son was diagnosed when he was around 9 years old. You see there was no CF newborn screening when he was born. There wasn’t even screening when my older son Chaz was born just 2 1/2 years before (and oh, I plan on telling you all about this and his CF testing later). So, Jen’s son had gone through life diagnosed with asthma. Until he started showing signs of pancreatic enzyme insufficiency, there wasn’t even a thought that it could be CF. This happens all too often with CF. There are so many symptoms that can be overlooked or diagnosed as something else. If you never have a bowel obstruction (as so many don’t) and are enzyme sufficient or your body is not starving itself to death it is easy to go thru life under the radar. I would be scared to know how many parents had their children taken away from them for failure to thrive because of undiagnosed CF! I could go on for days on the importance of newborn CF screening but I won’t. I am so blessed because I don’t have to – others have been fighting that fight and won. All 50 states now screen newborn babies for CF. One small step towards saving our children – or at least giving them the chance they deserve starting life. Anyway - Jen told me that day with conviction in her eyes that everything was going to be okay. It was the first time anyone had said that to me – or at least it was the first time I started to believe them.

My sister’s way of dealing with the news was to get very involved with our chapter of Great Strides (The fundraiser for The Cystic Fibrosis Foundation). In the 4 weeks between Cole’s diagnosis and our local walk she had gathered a team of around 50 people and had raised more than $7,000! Our wills were strong – we were doing everything positive we could think of and I do believe it was helping us get through the days. Our Great Strides walk was on April 25th and my 31st birthday was the day after. Team Cole received first place by bringing in more money than any other team that year – Our first year involved! After the walk we had a party at my mom and dad’s. That evening my parents watched the boys overnight so PJ and I could go out with friends and celebrate my birthday. In the middle of the night, Chaz got sick and was throwing up. My parents took care of him and called us in the morning to let us know.

I guess I have to insert here that I was already living a life a bit different than most people. At this point in Cole’s life, he probably hadn’t ever been to a store or even out in public unless he had to. He did not join us at the walk – Nina watched him. There would be too many people around and also there would be other people with CF there. For those of you who don’t know the ins and outs of CF – people with CF are actually supposed to stay at least 3 feet away from other CF’ers. And, if you are culturing one of the nasty bacteria, you really should not go to any place or event that there will be other CF’ers at. So, taking Cole to the walk wasn’t even really an option that first year. It was all still too new and scary. I was still on maternity leave and if I had to go to an appointment or the grocery store Cole would stay home with his dad or go to Oma’s or Nina’s. There just wasn’t any need to expose him to anything if we didn’t have to and for the most part we didn’t. We had at this point gone to Iowa City and met with the Cystic Fibrosis Doctors and nurses once. We felt good about what we saw at the clinic and were planning on taking him there for his monthly check ups and care.

Back to the illness - The boys had been all over each other the days before so I had a feeling that Cole had probably already been exposed to what Chaz had. Well, a couple days later he got sick. He was very congested and snotty and coughing a bit. That horrible Wednesday morning began like any other. Around 9 a.m. my grandmother (Nina) called me and decided to come to our house (PJ was at work) and help me out. I was still learning how to be a mother to 2 boys at the same time as well as one with special medical needs. The fact that he was sick was enough to throw my life into chaos. By the time she arrived, Cole’s breathing had become a bit labored. Thank God she came over. I don’t know if I would have recognized there was a problem as early as she did. We decided we should take him to his pediatrician. We all got in Nina’s mini-van and started toward the office. About 2 miles from home, his breathing worsened. At that point, my safety freak Nina demanded I go to the back of the van and get Cole out of his car seat to ensure he kept breathing. Anyone that knows Nina knows this was CRAZY. The woman won’t let you out of the driveway without a seat belt on – let alone an infant out of a car seat driving down the road. At that point I did what she said and held him on my lap in the back of the mini-van. I had no idea what I was supposed to do for him so I just kissed him, talked to him and prayed. Nina sped up and began running red lights! Chaz sat quietly and watched all of this go on around him – never saying a word.

We entered the office (with no appointment) and I said to the lady at the front desk my son was having problems breathing. Now, for you moms who have been doing this for awhile I am sure you’re saying to yourself – why didn’t you just go the ER? Well, this was all brand new to me and I guess I didn’t even think about it. Also, Cole went from a little sick to not breathing in a matter of minutes. Everything we’d learned insinuated that CF was not going to just kill him all the sudden. It was a slow deteriorating process that would take years, right??? We really didn’t have any idea what to do or what was going on.

Once the lady at the front desk saw Cole’s face, they rushed him into a room. And again - things get very foggy at this point. I know the room filled with doctors and nurses. I know I told them he has Cystic Fibrosis. I know they all seemed scared and were taking this very serious – scurrying around with medical equipment and asking each other questions. I know I felt completely helpless that I could not do anything for my son. I let myself stand along the back wall of the room out of everyone’s way. I know the idea that he may not make it started settling in my mind and I started to try and figure out how any of us were ever going to make it through this. I know I hated the fact that I was putting Nina through this. She had already lost 2 babies of her own and I could tell by the look on her face she was thinking we were losing another one. We were praying but I don’t know if it was silent or out loud. At one point she said to me something like “Sometimes there is just nothing you can do”. She was trying to prepare me for worst. I know that my 3 year old son was standing there with us, watching the chaos and sensing the fear. As they began giving Cole his first breathing treatment I called my husband and my mother. The pediatrician called an ambulance.

When they felt Cole was stable we were put into the ambulance. I was allowed to ride along with Cole. I think Nina took Chaz with her and PJ met us at the hospital but I don’t really even know. Cole was now on oxygen. I just glanced back and forth between the machine that told me his oxygen level in his blood and heart rate and his little face. They put him in his car seat and strapped it down to the floor of the ambulance. I sat on a bench on the side – way too far away for my liking. The sirens and lights were turned on and off we went to the nearest hospital.

In seconds we were there. Someone was wheeled out of a treatment room so we could be brought in. Again, numerous people filled our room. Some were asking me questions. Some were hooking up Cole to other machines. Some were just watching and listening. He was suctioned out a bit I think and then placed back on oxygen. The medics were filling them in on what was going on. I was standing nervously beside the bed. Soon he started having problems breathing again. If any of you have seen the movie Terms of Endearment- this is pretty much how I behaved at 2 different times while he was in the hospital. Remember the scene where Shirley MacLaine’s daughter is dying and needs pain medicine? She walks out to the nurses’ station to ask for it and when no one reacts she just starts screaming out of control until they do what she wants. Well, I told you I’m assertive, direct, controlling – I wasn’t joking. If I didn’t feel like I was being heard or Cole was getting what he needed I let the staff around me be aware of it – But at that time I was also out of my mind a bit and the only way I knew to do this was to become a bit verbally combative and loud. (This is also another huge topic – advocating for your child – I plan on discussing in depth on my blog.) When I realized no one had told them that Cole has Cystic Fibrosis I completely lost it. I thought this was such important information – how could the medics or his pediatrician’s not have informed the ER staff??? I let them know that I was appalled by their incompetency in their jobs. They looked at me like I was a crazy woman but I didn’t really care. They now were very aware my son had CF. Hell, the whole E.R. probably knew!

We were there for a couple of hours I believe. I can’t actually tell you much about it – I wasn’t really “there”. I think a part of me left when things got too tough. Or maybe my mind was just so overwhelmed I couldn’t possible think all those thoughts and be aware of all the goings on. When I look back now, it feels like I was drugged almost - Like they slipped me something to calm me down. Maybe they did!!! Or maybe PJ did!!! At one point, they asked me what I wanted to do. HA! What I wanted to do. I wanted to wake up from this nightmare! But instead I suggested they ask his CF doctor what we needed to do. This would be the first of many times that a Doctor asked me what I think needs to be done for my son. This is something that still makes me quite uncomfortable with the whole situation and something as I said above I will write about in detail later on – advocating for your child. When they felt it was safe for Cole to travel we were put in another ambulance. This time we were headed about an hour away to the University of Iowa Hospital where Cole is treated for his Cystic Fibrosis.