Wednesday, June 26, 2013

If I had a stethoscope and a tank of oxygen...and maybe a medical degree

We were admitted to CHOP this morning. After 5 days of an increased junky cough and then two days of incessant coughing and dropping oxygen levels, I finally threw in the towel and brought him into the hospital. We're visiting family in PA so I've been talking to Drew's doctor back in Cincinnati regularly over the past couple of days. We first added an oral antibiotic to try to kick this little extra whatever you want to call it. Then we added a steroid, which sometimes helps him because of his airway reactivity and tracheomalacia. Then last night, after he'd had breathing treatments and airway clearance at 7pm, he coughed and grunted throughout the night, doing treatments again at 11pm, 2am, 4:30am and 6:30am before I decided that this was simply more than I could manage from home and wanted to get him in before things got any worse.

I have to say that this was by far my most pleasant ER experience...of all time. It was quick and easy and straightforward. The doctors listened to what I had to say, and I credit some of that to the data I was able to share with them both from my PersonalExperiments tracking and from MyChart, the way we access all of Drew test results and medications and medical history, basically his EMR. They were able to quickly see when this started and how it all unfolded, and then see from his latest tests and cultures what his antibiotic sensitivities are rather than having to call his doctor or wait for culture results to determine the best course of action. Within 2 hours, we'd had an x-ray, done a viral panel and an epiglottic culture, and were admitted and transferred up to a room. High five to CHOP's emergency department for a job well done.

We got up to 8 South around 2:30 this afternoon. I was pleased with how quickly we saw a doctor who did a very thorough exam and asked lots of questions and listened to everything I had to say. I was less pleased when I did the same thing the second, then third, then fourth time with different residents, fellows and attendings. We missed his afternoon breathing treatments because no order was ever placed for his inhaled medications, despite the fact that I rattled them off, doses and all, more times than I can count. I even brought a bag of every medication he takes with me in case we couldn't get something in time.

After a few hours, I spoke with the attending doctor who was trying to figure out the best antibiotics to put him on. Their protocol is to,while waiting for the results of a culture which could take up to 5 days to be finalized, treat with IV antibiotics when the symptoms are such to suggest a pulmonary exacerbation. I expressed to them that this wasn't his typical presentation of an exacerbation. He is acting normal. He isn't coughing 24/7. He's not acting sick. But he goes into these fits where his oxygen is dropping and hes coughing so hard that he's gagging, and nothing that I could do at home was helping. It seems more like an asthma thing to me than his normal "sick". Something was going on that was causing more inflammation than normal, and I wasn't convinced that starting him on IVs was the best option. I believed that the steroid plus the oral antibiotic that he just started on would probably get him over this hump, but needed some help watching him or providing oxygen when necessary until we got there. The doctor agreed with me that watching him overnight would be a good option, to see if the oral antibotic and steroid start to kick in, or if something has set up shop in his lungs and needs a serious IV antibiotic to kick it. I appreciated that we were on the same page, and was happy to just be here knowing that we have what we need in the room with us (or just down the hall) if he has another episode.

Around 5:30pm, some respiratory therapists came in to talk about evening treatments, and I mentioned that we still needed the afternoon ones. It took them a little over an hour, but they were able to gather the appropriate supplies to get him done and said they'd be back after 8 for the night time nebs. I mentioned that Drew goes to bed around 7:30, but unfortunately that's rounds, so he would just have to wait. My poor, sick, exhausted boy, has to wait. So we ate dinner and watched a movie and then he got real tired. He is 3 years old. He hasn't slept in two nights because he has been awake coughing and doing breathing treatments. But I have to wait.

At 8:10, two respiratory therapists came into our room and told me that they only had two of his medications. One of the ones they had wasn't even a medication that he uses at night. Two of the more important medications that he's on they didn't have yet. Somehow, during those half-a-dozen conversations that I'd had with seemingly everyone who works here, no one put in an order for Pulmozyme. I insisted that he have it this evening so they had the doc put in an order and then we waited. The other medicine, an inhaled antibiotic that he's on as we try aggressively to eradicate or at least tame the achromobacter problem we've been dealing with since January, wasn't something that they use typically use here I was told. I explained why we are using it and that I's brought his with me, enough to get us through till Friday, but was told that I could not use my own medications. The nurse took one of mine down to their pharmacy for approval and said that what they have is exactly the same as what I have and that we have to use theirs, but first infectious disease has to approve it.

It is now 9pm. Drew is a hot mess of tears and tired energy. I asked how long this approval would take and they told me it could be several hours, but he would almost definitely be able to have it again in the morning. IN THE MORNING!? Did I not just express to you the importance of following this strict regimen to try to eradicate a mostly antibiotic resistant bacteria that is setting up shop in my 3yr olds lungs and starting to cause lung damage?! She explained that it is their policy to have infectious disease approve the use of all inhaled antibiotics because of the risks associated with exposure both to him and to other people who might be exposed to it. I understand that there are policies and procedures in place for many reasons. We are here because you are monitoring him. Right now, the hospital is doing absolutely nothing for him - he is not on antibiotics, he is not on oxygen, he does not have leads on his chest, I have not seen a nurse since she was in here at 9pm. The only thing that is happening right now is that you are denying him access to a medication that he needs, a medication that I have sitting right next to me on a table that I could give to him, but that your policy prohibits me from doing. And no matter who calls or how many times they call to try to expedite this process, we simply have to wait. "We have a policy" is simply not a good enough answer for me.

I appreciate the resident who listened to my concerns and simply asked that if I do decide to use my medicine and do the treatment on my own that I notify the nurse so that no one enters his room for 30 minutes, because that's their policy. I don't want to go against their policy, but I am also not going to skip a dose of this because of it. I was hesitant to accept anything less than an immediate solution, but told them that I would wait until 11pm and then I was going to do it myself, and that I would let the nurse know that I was doing it. He's supposed to get this every 12 hours. He last had it at 7am, and he will get it again tomorrow at 7am. Additionally, the poor thing just needs a good night sleep, and when I hook him up to this it will inevitably wake him up. I am so frustrated, but at the end of the day I'm going to do what's best for my son, even if I end up breaking a policy.

I hate being in the hospital because of things like this. When my son is sick he needs 4 things: medication, nutrition, airway clearance and rest. I can provide all of those things in my home. What I can't do is listen to him with a stethoscope to hear how things are. I also don't have oxygen at home to give him if things start going bad. I suppose I could get both of those things, but while I'm a caregiver (and a pretty good one if I do say so myself), I don't want to be his doctor. I want to be his mother. I want to trust that everyone is doing everything they can to keep him well. Sadly, I care about him a whole lot more than anyone else does. I do believe that his doctors and nurses and respiratory therapists do their best to keep him well while he is in their care, but I still care more. I know him best and I know what's best. It's now 11pm and I'm about to break policy.


  1. I'm sorry you're not getting the help you need there. You're the momma and you know what he needs better than anyone. I really hope they can get their act together and get you the meds.

  2. So sorry you are dealing with this. My recommendation is to keep going up the ladder until you feel like Drew's needs are being met. Is the antibiotic in question colistin? If so, based on my experience at CHOP, which was awhile ago, they don't routinely use it. That said, it's hardly an unusual or dangerous antibiotic in the inhaled form. In fact, I believe it has very low toxicity as an inhaled antibiotic, so the bit about not walking in 30 mins after seems quite bizarre to me. Regardless, I hope you figure everything out and Drew feels better ASAP!

  3. We finally got the antibiotic (and it was Colistin) and I didn't have to break any policies. They aren't terribly familiar with it and I understand, not many are. I really don't blame CHOP, I was just frustrated that there was a "my way or the highway" attitude and no willingness to work together on a solution, or even understand my insistance on him having it that evening. We got everything sorted out and he slept great last night so I think the oral antibiotic and steroid that his regular doc had put him on finally kicked in. Hopefully we are heading home later today!