Things were going fine. Then one sweet, busy day, a little girl decided to cough in Carter’s direction at school and that’s why we’re here at St John’s in the PICU.
He was admitted to the hospital two days after he started getting sick because Carter doesn’t really ever get hit like a ton of bricks. We do a lot of what the hospital would do on a normal basis, namely 3-4 times daily. His respiratory condition is pretty well controlled. It has been 11 months since he’s been admitted. ELEVEN! He almost made it a full year! By the time he gets to go home, it might even be 12 months since the first day of his last admittance. The biggest changes since then include: my husband, Joe, and the CPT machine. I believe that machine has been a life saver. It knocks most everything loose in the lungs before it can set up shop and cause problems.
It started with trouble breathing that progressively worsened. We were giving nebs at least 12 times a day. Then it was low oxygen sats and retractions. Then it was a need for extra oxygen and constant pulse oximetry monitoring. We took him to Fort Smith because he needed to be at least stabilized. His sats were doing OK until he got on the Peds floor. They transferred him to St John’s via lifeflight. When he got here he was gasping for breath and ultimately landed on the vent for three days – which he started taking off by himself as soon as the sedation was cut in half. This little booger has wiggled his trach out THREE times since we’ve been here.
Carter has been diagnosed with B. Cepacia… so far. B. Cepacia is pretty rare and mostly affects people with Cystic Fibrosis. The doctors are even sending cultures off for a second opinion, but they are still going to aggressively treat it and try to knock it out so we don’t have to take it home. But there’s no guarantee it will go away completely. The culture it came from was done a few days after he got here, so there is a possibility it came from the hospital. The weird thing, though, is that there aren’t any CF patients on our floor, and the CF patients throughout the hospital don’t have B. Cepacia, hence the second opinion. The bad news is that the results from the second opinion won’t be here for 4-8 weeks and we might get discharged in 10 days (this is the 4th day of IV antibiotic treatment).
There is so much that needs to be done before we go home. Dr. Carey has completely changed our infection control. We have to throw away all used trachs, all trach masks, nebulizer kits, and omniflexes. In the future, all our reusable supplies and equipment has to be soaked in Control III. We will be going home with a new nebulized antibiotic. I can’t remember the name of it.
B. Cepacia is pretty serious. It is a “cousin” to pseudomonas but it can cause a lot more damage than pseudomonas. Any pneumonia that he gets will get escalated quickly by the B. Cepacia (if not eradicated by this incident) and it will cause more scarring of the lung tissue, therefore inhibiting the absorption of oxygen to the bloodstream and hence shortening the lifespan or even resulting in death.
Now that I know how serious it is and that he is susceptible to it or could infect someone with is, I’m not taking any chances. Dr. Carey said Carter can’t be in the same room with someone with CF. People and organizations are so inconsiderate that they won’t even disclose information like that to us for fear of violating HIPPA – which I have A LOT of problems with – so I WILL make sure in the future that the information is disclosed to me before entry of their building. Luckily, our independent therapy center told me when I asked today and they don’t treat anyone with CF. However, the school DOES have a CF kid. I didn’t know this until after the fact. He may not have been the one to infect Carter and I sure hope no one got infected by Carter, but this is something parents of children with any chronic lung disorder should know! Every child with chronic lung issues has a weakened immune system! Including ATHSMA! My mom and brother had athsma in the 90′s and I remember them being sick ALL the time. They turned out to both have lupus and are constantly sick and dealing with respiratory issues and allergies.
Carter is unenrolled from school and probably will not return. I’m sure that kid wasn’t even supposed to be there. She was in the special ed room but I don’t think she needed it. I bet she was a kid of one of the teachers or CNAs.
The only problem I have is that I feel like I’m being rude. Carter can’t be in the same room with these people. But it’s not their fault. It’s not Carter’s fault. It just is. I hate turning people away when the issue is something they’re born with and they can’t help that they have it. I hate saying “We can’t be in the same room as you.”
But now, I guess I’m going to have to deal with it. This is what happens when you send your sick kids to school and out in public. This can also happen if you go to work sick. I know not everyone can afford to stay home, but infection control is more important than you think. We just want to live a normal life and not be in the hospital, but it is people that go out in public without masks and gloves when they are sick that keep not only us, but several other families from leading a normal life. There are more of us than you think and your actions affect us. Your smoking, your germs, your coughs, your poor hand washing, your self medicating and blaming it all on “allergies”. TIP: if it’s chronic, GO TO THE ENT (or allergist) or you can suffer the rest of your life. Which makes more sense? No, sometimes you can’t afford it, but think about how much you spend on OTC meds to control it? Would that total your handful of visits to get “cured” (as Dr. Carey would say). YES. It will.
I am just so fed up!
Wash your damn hands, people.