Wednesday, July 20, 2016

74

I figured out what happened with the Ativan that we were trying to get for Drew's PICC placement last week. His doctor had tried to place the order for it through EPIC for me to pick up at the local pharmacy but because its a controlled substance, you need to physically pick up the prescription from the doctors office and hand the paper to the pharmacist in order to have it filled. Keep in mind that I was getting .25ml, a quarter of a milliliter of Ativan, to help a kid relax. When I had her paged from the pharmacy at the hospital, after searching  high and low for the prescription she told me she had called in, to send a new prescription down while she was in the middle of a clinic, she didn't have the option to send, but only to print. Even within the hospital, she couldn't send an order for .25ml of Ativan to the pharmacy for me to pick up to give to him. You may wonder why they didn't just have her order it and have someone from the hospital administer the medication while he was in the OR for the PICC? Well, there isn't a doctor or nurse whose care hes under unless he's admitted to the hospital. So for an outpatient procedure like a PICC placement, the only way we can swing it is for me to get the medicine and take responsibility for him when I give it to him. If only the different parts that make this whole work would talk to one another before making arbitrary rules. This system is so f'd up. I digress.

As I've blogged about before, we've survived a week on IVs. That means dosing at 7am, 8am, 3pm and 11pm - cleaning hands, putting on gloves, cleaning trays, scrubbing the PICC, counting supplies, hooking up the medication, letting it run for an hour, cleaning the PICC again and then tucking it away until the next dose. Add to that mix phone calls from the pharmacy and nurses about levels of medication in his bloodwork, schedules for deliver of new medication and supplies, nurse visits to change the dressing on the PICC and draw labs, and the other interruptions of everyday life. I shouldn't complain about being tired because he sits through all of this and takes it like a champ. There is no swimming, no running around, no sweating. We play games or watch movies, but its a whole lot of inactivity and boredom for a 6yr old.

The hardest part this time around is trying to convince him to take one more medicine, to do one more treatment, interrupting his play to sit through one more dose of IVs when he's feeling absolutely fine. We try to explain that we are doing this to try to get his lungs healthy, to try to get that number back up, and he cries and tells us its not gonna work, mostly because all we've done so far hasn't worked. Maybe he can feel that nothing is changing, or maybe he's just frustrated like us. Either way, its hard to get him to do this all when he doesn't feel like anything is wrong.

What's most disappointing here, and alarming, is that his numbers continue to drop. His normal lung function is in the mid 90's. In the middle of June it was down to 87. Then we tried an oral antibiotic and rechecked and it had gone down to 79. We tried a week on a steroid and it went down to 78. The we went in for the kill with the IV's and after a week, I'm sad to report that he's now down to 74. He's down 20 points in 4 weeks and that's not cool. Just for reference, typically around 30% lung function is when people are discussing the options for transplant.

It's so hard in CF to determine the cause of the problem, like a constant crap shoot. I usually know the symptoms that merit an intervention, whether its a steroid or some IV's, and he hasn't shown signs of needing either of these things this time. We know his lungs are colonized with a drug resistant bacteria called Achromombacter but that doesn't seem to be whats currently causing the problem, otherwise the many different stabs we've taken at this problem would have likely caused the decline to stop, and hopefully turn the other direction. I've had a suspicion from the start that there could be a fungus causing this problem. The last time he had a bronchoscopy, he cultured a lot of fungus in his lungs. People with CF get fungus in their lungs sometimes, and we got it. Was it because he's always on an inhaled antibiotic that he needs to treat symptoms? Did it come from the inhaled steroids he's been on to help him go longer stretches with good health? Is it just something in the environment that he caught because that's how unfortunate having CF can sometimes be? We have no idea. We treated it with 3 months of an anti-fungal medication called fluconazole and it seemed to help his ever so slight increase in cough go away. The thing was that there were no symptoms that alerted us to the fact that he had this problem in his lungs. Last year he wasn't yet doing pulmonary function tests to tell his how his lungs were functioning because he was too young. But could this again be the culprit? Could the fungus we treated have not really actually gone away and now be causing this rapid decline in his lung function? It's our next best guess but there's only one way to find out - time for another bronchscopy.

When Drew learns to cough out the mucus his body produces, we will be able to take a sample of that to the lab to get tested to see specifically what type of bacteria and fungus grows in his airways and more specifically target therapies to help him. Until he is able to do that, he has this procedure done called a bronchoscopy where they put him to sleep, and they squirt saline liquid into his lungs to "wash" them and then suck out the water and test it to see what kind of bacteria or fungus they've found. We can't do this when he's on IV medication or an anti-fungal or the medication will skew the results of the test. So effective today, we stopped all antibiotics and will take him in for a bronchoscopy on Friday afternoon to see if we can figure out what else could be in his lungs that we are missing, and then hopefully figure out how to treat it.

I spent two hours with his doctor yesterday talking through all the options and symptoms and possible outcomes, and I requested that we start him on this anti-fungal drug and think about the bronch when we return from vacation, something we are scheduled to leave for this coming Saturday. She didn't want to start him on something for fear that when we return and do the bronch it wouldn't give us a true picture of what's really going on because of the medication in his system. She also didn't want to wait much longer to try to get to the bottom of this because losing lung function this quickly just isn't good. She also put him back on the steroid with the hope that we can knock out some of the inflammation before the bronch to try to get a really good wash of his lungs, stating that there was little risk [except to his life as me or one of the other kids might strangle the devil child he becomes when he's on a steroid] associated to trying the steroid for another short period of time.

In the meantime, Drew is acting perfectly fine. You would have no idea that anything was going on with him, as he's skipping around here just happy as can be, a little annoyed and sad that he's gotta do so many treatments and take so many pills right now, but otherwise with his normally cheerful and passive attitude about life. I'm hopeful that we will figure this out and  be able to regain much of the lost lung function with the right treatment. While we won't have results on Friday since it takes time for a culture to grow, we will have a different treatment option to try and will have answers (hopefully) the following week. Regardless of whether they are good or bad, at least we should have a better idea of what we are dealing with. Thanks for all the thoughts and prayers. While we can't answer everyone individually, know that we appreciate the support and well wishes and will try to keep you posted as we know more!

This video was taken 15min before I wrote this post - as you can see he seems to be feeling just fine!
video

Tuesday, July 12, 2016

Crazytown

I'm hoping that this brain dump will alleviate my headache. God its been a long couple of days. We went back to Children's yesterday for a PFT to check Drew's lung function post-steroid and to determine if he would need IV antibiotics. I knew that the steroids weren't working, but held out hope that we wouldn't need IV's. He blew a 77 this time, down again. We went from 92 in March, to 85 in early June, to 79 two weeks ago and we're now down to 77. The mystery of it all is that he remains symptom-less. I've been wracking my brain trying to figure out what could possibly be wrong since this is completely uncharacteristic of an "exacerbation" for Drew. I have an exacerbation score sheet for godsake and it's telling me that he is not having an exacerbation, despite lung function that continues to drop lower and lower. All of this thought and wonder and worry culminated in the parking lot of Home Depot on Sunday where I sat crying because I couldn't find a paint color for my living room. My cure for grief is action, and so despite being mentally and physically exhausted, I decided that we needed to paint the house. So we did. (I finally found the right paint color and we got that all taken care of on Sunday, in case you were wondering).

We had talked to Drew's doctor over the weekend about our plan for if his numbers were still low, and had scheduled an appointment to have a PICC placed at 10am on Monday, something that we could easily cancel if his numbers were miraculously up. They weren't, and so at 7:45 on Monday morning we knew our plan. We had discussed what medications we would use, the dosing schedule, the plan for the PICC placement - no sedation, just a small dose of Ativan to keep him calm (next time i'm asking for a dose for me too) - and we were set. A wonderful friend who is going to make a wonderful doctor someday soon met us at the hospital to keep us company and better understand the patient and family experience of care through this process. I was so grateful to have her with us when the first hiccup of the day happened.

Drew was scheduled for his PICC at 10am, and I was to pick up his dose of Ativan at the hospital pharmacy that morning. When we arrived at 7:30, I realized that that pharmacy didn't open until 9am, no problem. After we got the results of the PFT and knew that the PICC was a go, we went down to radiology to register for the PICC procedure and were quickly ushered back to an isolation waiting room, something I request the moment we step foot into the hospital. For me, there is always a fear of a[nother] hospital acquired drug resistant infection, so I take extra steps to ensure his safety and my comfort with it. The issue I have with these so-called "isolation rooms" is that there is no indication of when it's been cleaned. I don't know who was in it before me, whether it's been cleaned, if it will be cleaned when I leave it, or anything at all about its cleanliness. I do not trust blindly, especially when it comes to Drew and germs. Can't we put a sign on the door to indicate that the room is clean? Anyway, we got called right up to interventional radiology so they could use an ultrasound machine to identify a good place in his arm to put the PICC and then mark it and add numbing cream. The nurse then took us back to the isolation room - the one we had been in, the one that I had closed the door to before we went upstairs for a moment but when we returned the door had been opened, the one I had no indication of having remained ours and no one elses while we were gone for 20 minutes - to wait for the pharmacy to open so we could get his dose of Ativan before starting the procedure. She told me to have the receptionist page her when we got the medication and were ready, as it looked likely that they could take us early.

So at 9am, I left my friend with Drew in the isolation room to run over to the pharmacy to pick up the medication, only they didn't have it. Did I screw up? Was I supposed to have gotten it from CVS on my way in? I had her call CVS to see if they had it and could transfer the prescription, but they didn't have it either. His doctor had emailed me yesterday to say she had called it in, and I was able to pick of the other anti-nausea medicine, but the Ativan was nowhere to be found. I called up to clinic and had the receptionist page the nurse who was covering for our nurse who is on vacation. She told me she would page Drew's doctor, who is in clinic seeing patients, to have her call down a new prescription as soon as possible. At 9:40, forty minutes after having arrived in the pharmacy to pick up this order and delaying the process of getting a PICC, something that was suggested by my husband that perhaps I try without the Ativan so as to not delay the placement of the PICC any longer, the pharmacy got the order and gave me the med. I was livid. I was livid not because of the mix up, though I don't know what happened to the first order, but because I was already exhausted - mentally and emotionally, trying to prepare myself and Drew and our family for what life will be like for the next two weeks with running IVs from home, with no swimming, with no sweating, with lots of interruptions from pharmacies and home care nurses and extra appointments and a rigid schedule of medication infusions - and now I had to become the detective and problem solver of a problem that I had no part in creating. Sure, I could have walked away and we could have done the PICC without the Ativan, but to help him, if even just a little, relax and feel a tiny bit more at ease about the whole process was worth the work. The longer it took to get the medicine, the more my stress levels rose. He was waiting, nervously, without me in a room with a friend of mine he only kind of knows while I asked and waited and tried to decide which direction to go. Thankfully I stayed and got the medicine, because the PICC placement didn't go as planned - 6 sticks, two blown PICCs and finally a successful placement later and we were all set. Without the Ativan, this would have been suffering. Avoidable, minimizable suffering that has a lasting impact on a kid who already has more to deal with than most adults will in their lifetime. I will always request Ativan, not because he needs it, but because he deserves it.

Following the PICC placement procedure, we went back up to clinic to meet with the homecare nurse for the first doses of the medication. We always do this at the hospital in case there is a reaction. IV's are no joke, and its better to be safe than sorry. Our nurse was lovely and we chatted while I answered a flurry of text messages from concerned friends and family members. Drew happily colored and played on his iPod until the first two infusions were done, and we were on our way home by 3pm. To think of this as a short day was a bit ironic given that we had arrived at 7:30am, but sometimes these days can last for 12 or 15 hours, so this felt short. It felt short anyway until we got home. Then it hit me like a brick wall. We had made it, I could exhale, and the stress of the unknown from the past several weeks started to show up in my horrible back pain, throbbing headache, and exhausted mind. I laid on the couch for the next many hours, my husband putting the kids to bed, and then finally went to bed myself after hooking him up to his nighttime dose of Meropenum. I woke up today feeling awful. My head hurts. My everything hurts. I don't know if its harder this time because he's more aware of what's happening and in addition to managing my own stress and anxiety about everything I'm also trying to minimize his? Is it because the rest of the family sees this as unfair and I feel responsibility to help manage expectation and disappointments and frustrations? I don't know. I do know that in a day or two we will find our groove, everyone will have accepted our temporary routine. Forgive our messy house and scattered minds and shitty attitudes for the next two weeks. It's sort of like survival mode over here, for all of us. We so greatly appreciate all of the thoughts and prayers, and will keep you updated on all things happening here in crazytown.

Friday, July 8, 2016

I'm a maker. We're all makers.

A few weeks ago, I threw a tweet out into the universe looking for good ideas on how to create a hands-free nebulizer for Drew. He gets to play on his iPod during treatments, and with having to hold the nebulizer, he's only got one hand free to play games that mostly require two hands. He does this thing with his arm where he uses it as a ledge to balance the neb, but it usually falls or spills leaving both of us feeling frustrated. A mask would be a simple solution, but we'd graduated from a mask to a mouthpiece for deep breaths and deeper medication penetration into his lungs, and also for the opportunity to utilize the Aerobika for additional positive expiratory pressure, something that helps to open his floppy airways and allow him to cough out the junk that makes him sick. Anyway, you can't use a mask with the Aerobika, so we are left trying to find ways to allow him the simple pleasure of playing on his iPod during treatments while still receiving the full benefit of the treatment.

So a tweet went out, and what transpired was nothing short of magical. People from around the globe and in a variety of industries and roles shared their ideas and feedback on what we could do to solve this problem. I love it when the network uses its powers for good. Read what Susanna Fox captured in this Storify of the weeks we spent online prototyping options and finally reaching a reasonable solution. A solution, I should add, that now lives on the Maker Health website (or will as soon as I hit "publish"). This is a place where anyone with a good idea can share their idea to help others learn. Check it out.

Here's the deal

In the middle of June, I wrote a post about Drew's clinic visit and declining lung function. His normal range is mid 90's. At our quarterly check up, his number was down to 85. Before we left for Philadelphia he had dropped down to 79. We decided to treat him with 2 weeks of an oral antibiotic to see if that would help him, thinking that there is probably an infection in his lungs (there's always an infection in his lungs, like literally, but its not always causing a problem), and planned to retest him upon our return. Well, we returned and his lung function is still at 79.

So the big question is what to do. Normally, I would be on board for treatment. But normally he would be "sick" in the more traditional sense - increased cough, decreased appetite and energy level. And none of those things are there. I've used my Orchestra data to tell the story of his health time and time again, and i'm coming up short this time. There is no cough, and there hasn't been for months. His weight is better than its ever been, and his appetite remains unchanged. He is sleeping well and generally happy. Yet his lung function is going down. His doctor suggested that sometimes kids this age aren't able to articulate when they can't quite take as deep a breath, or when they're struggling to clear secretions when they have a more subtle infection going on, stuff that may be less obvious to my naked ear. But I feel like he would have something going on that I would notice, anything, and I don't. Sometimes people with CF just need a tune-up, and I hate prolonging the inevitable if that's what needs to happen. The thing is, I'm not convinced that's what needs to happen. I don't know what the problem is - an infection? increased inflammation? allergies? reflux? I don't know, and the only way that it would seem that we can figure that out is to try different treatment options to see how he responds to them and what makes him better.

The current plan is a steroid burst to see if there is inflammation that we can get under control, and retesting his lung function on Monday morning. We also have an appointment to have a PICC placed on Monday morning following the PFT to start two weeks on IVs if his numbers aren't up. Hopefully one of these things work. Normally I'm annoyed when people try to give me suggestions for how to treat him because I normally feel like I have a pretty good handle on him as an individual, but this time I am at a loss. I don't know whats going on. I don't have data to support any theory of illness or allergy or other inflammation otherwise. I'm open to ideas, thoughts and suggestions so please do send them my way if you have them. Stay tuned!

Sunday, June 19, 2016

My ideal

We had an appointment this morning and it went great! We woke up early and did all of our breathing treatments, and right before they ended, we signed onto our web portal so that our respiratory therapist could watch how we do them and review settings on the vest. We both took some notes. We discussed using a new device called an Aerobika, something that he can breath into that will give positive pressure and vibration so loosen secretions which he can then expel. She shares a link for us to check out another kid using it on YouTube and tells us she will send one out with home care later this afternoon.

Between the RT and the doctor, our nurse gets online to review our current meds with us. She's sent me a message through our shared portal last week and asked me to review, marking the medications that we are or are not taking, and I'm able to do it one evening after I get the kids to bed. She simply confirms that nothing has changed before we move on. She asks what we need from them - refills, doctors notes, referrals - and agrees to email us the forms I had sent for school next year, and then steps away to grab the doctor.

The doctor pops on to review labs that we had done at the outpatient clinic one evening last week and is pleased that everything looks great. We've been practicing our PFTs with our home spirometer and, while our number is down slightly, we agree that since everything else is going so well that we should just stop by the clinic sometime this coming week to repeat it in the PFT lab to make sure there isn't something going on that needs treating. His weight looks great, something she's been following through our shared tracking portal, and neither of us feels the need to meet with the dietician this visit. We had discussed this prior to our visit in our pre-visit plan, but she confirmed that he was in good standing all around and agreed it wasn't necessary to spend time meeting with anyone else. As she is talking, we both have the opportunity to create a shared note - her turning my narrative into data and me reacting her thoughts and turning her suggestions into action items in my own words. She notices that my interpretation of what she had said earlier wasn't what she had meant, and we quickly discuss before we both feel confident in our next step. She asks about our summer plans and what refills we might need, and then puts us on a brief hold while transferring us to the Infectious Disease doctor whose following us because of Drew's achromobacter.

After just a few minutes on hold, the ID doc gets on the line with his nurse and we talk about next steps for treating his achromobacter and candida, a fungus that grew on his last culture. We have culture swabs at home that we use every few months and mail them into the lab so that we have results to discuss during our visit. This is so much better than the old way when there would be an anxiety filled week waiting for a lab result to pop up in MyChart, not knowing what it would say or how it would or wouldn't change our life. We know what he's got going on down there, and talk about plans for treatment. He mentions a study currently underway for CF kids looking at the variety of bacteria families found within one persons airway to determine if folks are acquiring one strain of a bacteria or multiple, and has found that in the 80ish folks they've tested, not only do they only have one strain, but they're all unique, suggesting that the infection control protocols they've put in place have all but eliminated the passing of bacteria from person to person in clinic. This is good news for a germophobe to hear! He offers to take a look at the specific strains of achromobacter that Drew has to determine how they act and react to different medications, and naturally I take him up on the offer. The notes I'm taking that he can see are reminders for myself to discuss with my husband when we he gets home this evening.

Before we get off the call, the nurse who had joined the ID doc offers to help us arrange our next appointment, suggesting that it may be difficult to find a time that works with everyone schedules. She shares her screen while I look through my calendar and we are able to find something that works.

Before we hang up, we are scheduled for our next follow up, this one will be in person as we alternate between e-visits and visits to the hospital to minimize the interruption that CF has in our lives and also the risk to catching something while we are there. We can both download a copy of note we have co-created. The appointment is over within 45 minutes, taking approximately 2-3 hours off the time of a normal visit. Drew is excited to have seen the faces of the folks who normally take care of them, as over video conference they don't need to gown, glove and mask. Its funny how a little face time, even virtually, can create that kind of connection.

None of this really happened. But what if? What if I didn't have to find a babysitter for the other kids during Drew's appointments, paying them for 4 hours while I sit in clinic with Drew who would rather be at home. What if I didn't have to bribe him with treats for not touching the elevator buttons in the hospital. What if I could get labs done in the evening rather than between 9-4, and what if I could talk with my doctor about the result the same day that the results come in, eliminating much of the worry and fear that comes simply with waiting. What if I had the chance to modify his med list, telling them what we take, and ensuring its correctness in his medical record, in real time. What if I could really create a note with his doctor, google docs style - me typing in blue and her in red, the respiratory therapist in orange and the dietician in green and the infectious disease doc in purple, true and total transparency - and what if that enhanced understanding between us, me more clearly understanding her recommendations, and her having a glimpse into my thoughts and feelings, practical and emotional, eliminating errors and misunderstandings, creating an action plan that we both feel confident that we can follow. What if I could look at a calendar online at a time that's convenient for me, selecting who I want to see and when, simultaneously checking my calendar to find a time that works for us and never having to wait on hold while a scheduler tries to solve this for me between the hours of 9-4pm.

What really happened during our appointment last week was captured in the previous post, but if I had it my way, this would be my ideal.

Tuesday, June 14, 2016

Yesterdays appointment, and problems with the system

Drew had a clinic visit yesterday and it went pretty well! We haven't been to clinic for about 4 months because I didn't want to pull him out of school for an appointment, so with good health, we pushed it out an extra month and went just yesterday. He's been incredibly healthy for the past 18 months, a longer stretch of time without any oral or IV medications than he's ever had which is amazing. His PFTs were low yesterday - not so low that any action needed to be taken but low enough to cause some concern from his doc. But here's the thing - I've seen him do his PFTs before, and while he's still relatively new to the process, he wasn't doing them quite right. I can't put my finger on exactly how it was different, but he wasn't blasting all his breath as hard as he could right off the bat, and I don't think its because he couldn't due to an illness. When he does his breathing treatments at home, he uses a device called an Aerobika that he blows into with long, hard blows that cause a positive pressure in his lungs and opens them up (hes got malacia that makes them extra floppy) and allows him to move mucus. I think he's got the Aerobika technique mixed up with the PFT technique and I'm not sure how to fix it. We are going to come back in two weeks to try again.

Otherwise, the appointment was pretty unremarkable. He's gaining weight like a boss and is happy and healthy and so are we. I'll do a culture this weekend when he's been off of one of his treatments for a few days so we should know more about any new bugs in another week. Fingers crossed we are still just dealing with the beast that is achromobacter. We will also repeat his PFT before we head back to Philly to see if we can get his number back up, and if its still low will have to discuss options to treat or try to figure out what's causing the low number.

Weight chart from July 2013 to present! BOOM!

The next part of this post is in no way a dig at our hospital or our care team, but rather a general annoyance with the system that I experienced and I've heard many of my peers experience. These are my feelings and opinions and don't reflect that of anyone by myself. And i'm so annoyed that I even stated that. 

Per the usual, upon arrival at clinic a nurse or another assistant will come in to take Drew's vitals and then review our med list. And every time, I ask why we are doing it with the response being, "We just want to make sure everything is up to date", though I've yet to see anything change. So we went through the list:

Her: "When was the last time he took Albuterol?"
Me: "4 years ago"
Her: "Atrovent"
Me: "2 years ago"
Her: "Pulmicort"
Me: "6mo ago"
Her: "Azithromycin"
Me: "The liquid or the pill?"
Her: "The liquid"
Me: "3mo"
Her: "The pill?"
Me: "This morning."
Her: "Fluconazole"
Me: "That was just a 3mo treatment"
Her: "So he's off it?"
Me: "Yes"

And on and on and on. We got all the meds hes taking, and "got rid of" the meds he isn't, and we went on with our appointment. 

Then before I left, I got my After Visit Summary (AVS), a nice little report of what we discussed during the visit, recommended action steps (make your next appointment, for example), and an updated medication list. Only it's not. Now I don't really care too much whether the med list on my AVS is accurate because I don't use the AVS for much, just a reference or reminder, or to tell my husband what we talked about in clinic. But if it's wrong on my printout, its wrong in my EMR, and the next time I'm asked what med's we are on, we will waste everyone's time by going through this whole process over again. And nothing changes. I've experienced this countless times with homecare nursing, sometimes coming twice a day and having to go through this process, and the list has never, even been right. Before he has gone in for procedures I will review it with someone on the phone the night before, then a nurse in the OR that morning, then again with anesthesia before they take him back and every single time we make the exact same corrections. I think the reason it doesn't change is because only the prescribing physician, the one who put it into the EMR, can take it out, so when you think that the nurse is making the changes they're really just making a note of the changes, flagging them as needing changed, and expecting that the doctor will at some point go in and make the changes. But that doesn't happen, and at no fault of the doc or the nurse or anyone else specifically, except a faulty system. What if something happened to Drew and I wasn't there to tell them what medications he's taking and with what frequency? What if someone less empowered than I used that AVS as a guide for taking their medications? What if there were harmful drug interactions in that list - something new added when the old stuff is never taken away? How might we fix this? The kicker of this image is that is states very clearly that "this list is accurate as of 6/13/16 at 11:59pm". Only it's not. 

Another flaw of the system is appointment scheduling. I need to take Drew back for another appointment in 3 month, and then in 3 months again. I have a preference for the first appointment on a Monday morning, and I also have a preference that we do these appointments at a time that is least disruptive to his life, specifically days off of school. It doesn't matter what anyone else thinks I should do or not do, should deal with or not deal with. This is our life and our preference and we should be allowed to live it according to our own priorities. I digress.

So I called to schedule an appointment for September. In my mind, this should be early enough to schedule an appointment for September 12, a day that he will be off of school. Well there are no appointments available on September 12, only the 19th, and not until later in the morning. So I ask about October, willing to push to the next day off of school so that he's allowed to keep doing what he wants, which is being at school with his buddies and not missing out. Well the schedule for October isn't available yet so I can't schedule for October. I go back to the 19th that they had proposed, however the infectious disease doc that we also see during our appointments isn't available on the 19th so we would have to make a separate appointment to see him. Listen, I don't like to come into a hospital with my kid who is susceptible to dangerous infections in the first place. Now you want me to pull him out of school AND bring him in twice? I'll figure out another solution.

After 12 minutes on the phone I hung up with no appointments and no plan. I can schedule a haircut for my kids from my phone - why can't I log into MyChart and browse through appointment options that work for me? Why does a system that weighs so heavily on patients and families make it so hard to do such simple tasks? What can we do to change this?! And for the record, I don't think these are unreasonable requests. If a motivated, engaged, health-literate adult has this much trouble navigating the system, are we actually maybe causing harm by not addressing these seemingly soft problems?