The hole in my heart

A new malady has joined the ranks of things that I will be managing in our house. I found myself in the ER on Friday night with some mild symptoms - lightheaded, short of breath, fluttery heart. After two days and a bunch of tests it was determined that I had a mini-stroke caused by a hole that was discovered in my heart. This type of congenital heart defect, called a PFO, isn't uncommon. Everyone is born with this hole, but most close shortly after birth. For the 25% of people whose don't, most don't have any problem. I, however, am lucky enough to also have an arrhythmia, which creates a somewhat significant stroke risk. After 3 days in the hospital, I was sent home on a bunch of new medication with really no restrictions and told to follow up with a cardiologist. I have an appointment scheduled for next week. While I am very outspoken and opinionated on most things related to Drew's health, I have found myself a bit lost in this new world of cardiology. I will tell you everything that I know about my heart.

1. I have a heart

When I met with a cardiologist while I was in the hospital, I found myself wowed by his knowledge and simply "taking doctors orders". He told me that we needed to get a better record of my arrhythmia so they would implant a device in my chest called a loop recorder to track my heart rhythms ongoing. At the same time, they would do some sort of internal echo where I swallow an ultrasound wand and they take a closer look at my heart and measure the size of the hole to determine how concerning it should be and what we need to do to treat it. My understanding is that if there is a significant arrhythmia, we will need to address that prior to addressing the hole, because if we do close the hole there will be no way to get to the side of the heart to fix the arrhythmia. I'm sure anyone from the heart community reading this is cringing at my lack of knowledge on the subject and the probable inaccuracy of what I'm saying. I think that's probably the part that's most terrifying; not that I have the problem (it's actually a really good thing that they found it and sounds relatively straightforward to fix it), but rather that I understand so little about it and feel so helpless, asking questions about stuff I don't know, putting my trust in doctors who I don't know. I don't know if I have a good doctor or a bad doctor, and I don't know how to tell the difference. Is there a protocol for dealing with this sort of thing? How do I find a good center and someone who I can trust?

This adult world of medicine is new to me. These doctors aren't accustomed to answering all of my questions and exploring all of the alternative options that I want to check out and I don't like that. They don't appreciate that I have knowledge and skills and that I've been searching online and scouring social media for any and all options - a 50yr old proven effective fix and a 2yr old new, novel approach - I need to know all the options. I like being in control, and when it comes to my life and my health I deserve to be in control.

I've used most connections that I have in the healthcare world to figure out where I should and shouldn't go, and how I can figure out who will be the best doctor for me to see. I've gotten input from 4 cardiologist, directly and indirectly, in the past two days since being discharged, and the fact that they are all seeming to agree with one another leads me to believe that there is a somewhat straightforward path for dealing with this (protocol vs preference). I have some appointments next week to meet some of these doctors and will figure out who I'm best suited to partner with. Until then, I will continue to take my new meds and keep on keepin' on.

Tomorrow I am off to DC and then to NY to make sure that the patient/caregiver perspective is heard and appreciated in all aspects of clinical care. Maybe I can focus in and grab some tips to apply to my new situation!

My perspective

This is my perspective on our life, as described perfectly by blogger Kelle Hampton. I'm sure many mamas (and papas) living in the "chronic condition" world will be able to relate to these words. 

"Being sad and venting is important in acknowledging our feelings, but it’s a very unproductive place for me to stay. I want to focus on solution-based thinking—transforming round holes to square ones when we can. Using resources to change the outcome. Looking around and ripping things off walls, if necessary, to build what we need. We’ll do it because we have to. Because we love our kids, and when you love your kid, there’s no square peg you won’t take on.

And as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting." 

- Posted using BlogPress from my iPhone

I love this place

I hate this place. Coming into the hospital with a "healthy" kid in the middle of cold and flu season seems so counter intuitive. Add to that taking a kid with CF, whose only restriction in life is being around other kids with CF, into a clinic full of other people with CF. The anxiety almost put me over the edge today. We usually schedule our appointments for 8am on Monday mornings when no one is at clinic yet and hasn't been in a few days. The office is clean and the air is fresh. We still wear a mask from the car, up the elevator, through registration and into the waiting room. Once we are back in our own private space I allow him to remove it. Today we could only get in at 8:30, and by the time we had arrived the registration line was full of kids, some in masks, some coughing, some looking less than well. We waiting in line and then waited in the waiting room, as far away from everyone else as we could. I wouldn't let him touch an elevator button or even sit on a chair, fearing that he would pick up a bacteria similar to those he has caught in the past, or maybe worse. The anxiety almost took me today. This is not right!  I kept thinking to myself that this is so not right. And i'm the empowered mom who knows the dangers of patient to patient spread of bacteria. What about the other kids whose parents are less engaged, for whatever reason? Are they just out of luck? No one told them to wear a mask or to not sit next to another patient with CF. How do we even know who all in that waiting room has CF? Maybe some are siblings, who knows!
I've long had a suspicion and fear that the clinic could be the place where Drew is getting some of these bugs, but I've also always had strong faith in the recommendations put forth by the CFF, and they include seeing your care team quarterly. Then last year when all of these new infection control guidelines came out and there was all sorts of data shared on the prevalence of patient to patient transmission, I knew that I was on to something. I freaked out and decided that we weren't going back, but we went back. I am overcome by anxiety and fear when we visit clinic, to the point where my worry makes me nauseous, but we return. This time, my "mother bear" instincts kept telling me that this just isn't right, and I'm determined to find an alternative.
You see, there is very little that happens at a clinic visit that a person can't do remotely, removing the possibility for them to come in contact with a contaminated surface and potentially harmful bacteria in the clinic. There is portable spirometry equipment. People have scales in their homes, and tape measures. We happen to have a PulseOx and an electronic stethoscope, though we don't use the stethoscope. And most of us these days have a cell phone or a computer that they communicate with. I want the opportunity to have a virtual visit. I want the doctors to trust the data that I'm recording, and to consult with them on my sons health. They can offer great insights into why things may or may not be going a certain way and provide me with tips and suggestions on how to make improvements. Regular consults to stay connected without having to be put at risk. How we bill that type of visit or consultation seems to be the issue.
What I love about Cincinnati Childrens is their willingness to embrace this type of idea. They say we understand your concerns, let's explore the options. I've taken them 10,000 thoughts and ideas and suggestions and concerns and not one has been dismissed without hearing me out and trying to find a solution. I hope that we can work together to make something like this work, the virtual visit. It will be hard for places like the CFF to embrace, as it's hard to measure the effect of something that's sort of abstract. I don't know what information they will want and need to feel comfortable and confident that my son is doing well despite not seeing them in real life, but I will work to find out.
Drew got two thumbs up today for his health. He is doing really well right now. He started to feel better about a week into his second course of IV's. The IV's ended on January 28th and we switched right onto his cycled Ceftazadime. Our test of how effective the IVs were will start on Wednesday when he will be off of any kind of antibiotic for the first time since November. The goal of the IV treatment was to extend the period of time that his cough is at its baseline (which is no cough). Prior to the IVs, he couldn't make it from one 15day on-cycle through the off-cycle to the next without being symptomatic and needing another type of intervention (oral abx or a steroid). Hopefully, the IVs suppressed his bacteria enough to allow him to carry on symptom free for nice long stretches. We did discuss the "what-if" plan, as in "what-if the cough returns sooner then we want it to?".  If he ends his inhaled therapy on Wednesday and develops a cough before his two week off-cycle is up, we will start cycling two inhaled antibiotics and not have an "off" period (so two weeks on Ceftaz, two weeks on Tobi, and so on). We both hate that he will be on inhaled antibiotics all of time at such a young age, though antibiotic resistance apparently grows incredibly slow on inhaled medications (often times it takes years). We know that he can get to a baseline of cough free and feel that whatever if takes to maintain that is ultimately whats best for him in the long run. So starting in two days, we will regain another hour and a half our our day, taking our total treatment time down to just 1.5hrs daily, and wait to see what happens. What will we do with all of our free time? Probably worry, it's what I do best. Fingers crossed for a nice long stretch of health, and more to come on a fabulous new tool for patients!