The road to Lock Down

This brings me closer to why I held my family captive last fall. Why I quarantined my children and myself and wouldn’t allow anyone to see us. Why I didn’t even go to the grocery store for weeks. Why I lied to health care providers. Why even my husband was too dangerous to see or touch for days. The first time I remember really being afraid of H1N1 was in that hospital room. The news kept coming on and talking about the outbreak and how it had reached the United States. They kept saying how bad it could get and it wasn’t even flu season. They kept saying that people were dying. I knew that the hospital was a great place to get exposed to the virus. I was on guard for someone being brought in with flu like symptoms. I asked the nurses if there was anyone in the hospital that they suspected of having the virus. My son could barely breathe as it was. I couldn’t imagine what would happen if he got H1N1. But, he wasn’t ready to come home yet so we followed every precaution not to come into contact with anyone or anything while we were there. It wasn’t that hard ~ I didn’t want to leave Cole’s side anyway and seeing the other sick children was so agonizing. Since what Cole had was contagious, the nurses had to wear masks and gloves when they came into his room. We had to wear them when we left his room. Most people would probably detest that -I loved it! A visible barrier between germs and my son. Viable proof that we were doing something to help protect this tiny child.
On Friday afternoon we were released from the hospital. As I said before, it took Cole several months to fully recover from this illness. I will never fully recover. The memory of those days will forever live inside of me. I can only hope that Chaz has forgotten. Unfortunately, even when our minds forget our bodies and souls don’t.
The summer was pretty uneventful as I remember it. We were making our monthly trips to Iowa City to the clinic. He was on antibiotics for months back then. Any time he was congested and coughing a lot they put him on antibiotics because he is more susceptible to a secondary infection so he was always on something it seems like. I hated this – worrying it would harm him somehow or that his resistance to them would build. I also liked knowing we were killing (at least trying to kill) everything he was coming in contact with. I was still so afraid of everything – always on edge and just waiting for disaster.
The next big event was our first (and only) pseudomonas (Pseudomonas aeruginosa) culture. The boys and I were driving Nina to Kentucky to her sister’s funeral. (Rip sweet Margo!) About an hour and a half out of town the clinic called to tell me he had cultured it. She said she would be sending a prescription for a nebulizer, oral antibiotic and Tobramycin. We had only used a nebulizer at the E.R. or hospital and we did not have one at home. I told her we were heading out of town and wouldn’t be back for a couple days. She said to wait until we returned to start treatment. We would have to order the equipment and it would be easiest to do at home. All I really knew then was this was one of the “bad” bacteria ~ One that they had a hard time getting rid of and caused of a lot of the lung disease which leads to their death.
When we returned we ordered all our new equipment and medications and started. It was scary because it was all so new. Being responsible for administering these medications to your child is very stressful. I worried I would forget a treatment or he would fight me the entire time. I worried that I was not doing it right or would somehow mess it up. I worried that the drugs wouldn’t work. I worried that the drugs I was giving him were doing harm to him somehow. I just worried. Amazingly enough Cole has not cultured P.A again!!!

The next event was a couple months later. I received my monthly email after our clinic visit with our culture results. This time he had cultured MRSA (methicillin-resistant Staphylococcus aureus). I freaked out. I only heard of people having open sores or wounds that got infected with MRSA. I didn’t know that it was commonly found in people’s nasal cavity and mouth. At first I don’t think the clinic was going to do anything to treat it. I was a hot mess about it though and think I even said if they didn’t take this serious I was going to get a second opinion at another clinic. Our wonderful clinic director was no stranger to my freak outs at this point. (At one point I had a list of issues I took to the clinic for them to address. They handled me very well and did not get defensive. I think this is how I knew Cole is where he needs to be. They asked me to join the parent committee to make sure I was involved on the way things are being done. They didn’t avoid me or begin hating me even though I could be such a royal pain in the arse!)
The director assured me that they were taking it very serious, gave me some additional information about MRSA (probably even statistics) and wrote us a script for bactrim I believe. And once again, I am so happy to say that is the only time he has cultured MRSA!