Oh, for the innocent days, before I knew that croup was not an old wives’ tale. For the days before the wheezing in the middle of the night—the stridor breathing in between each cry—made my blood run cold. For the days before I knew about pulsox and oxygen sats, floppy airways and bronchiolitis, and the increased mortality rate associated with intubation. Before the word “intubate” entered my vocabulary, for that matter. Before I knew what it meant when an ICU room fills up with people.
It’s not what it sounds like. Not yet, anyway. No, at this moment Alex is at preschool and Julianna is in the basement singing and beating on a drum. Perfectly happy. But last night was Night One of the croup, and we’re already on the phone with doctors and nurses. Put this into the category Playing It Safe. May was really, really rough. For those who weren’t with us then, here, here, and here are some representative posts.
But in September, I overreacted. So now I’m trying, once again, to find a balance.
At this point, our family has more experience with health care than most—at least, from the standpoint of the consumer. For all the noise in Washington about health care reform, there’s a piece of this puzzle that is not being talked about, and that is health care providers.
I have no problem with the $45-80,000 that gets billed whenever Julianna goes on a ventilator and sits in the P-ICU for two weeks. None whatsoever.
What I do have a problem with is the fact that we can never, and I mean NEVER, call our family doctor and get an appointment when someone is sick. All the appointments are taken up by pointless “well child checks,” which, outside of the vaccinations and a weight check, tell me absolutely nothing; and other non-essential medical appointments.
What I do have a problem with is the fact that if I call because of excruciating pain in my hips while pregnant, I have to wait a week for an appointment. If I call because I have excruciating pain while nursing—which, incidentally, I’ve put up with for two weeks to see if I could treat it with ibuprofin—I have to wait over the weekend, unless I get super lucky and they “overbook” with the nurse who specializes in breastfeeding issues. (Yes, I did luck out on that one.) If my child, who has Down’s, and has been hospitalized four times for upper respiratory distress, develops a wheeze, they might be able to squeeze me in with some resident, nine out of ten of whom have no clue what is going on.
Because I have no choice, I take whatever I can get, only to wait for two hours in an exam room while all three children scream, shriek, and otherwise shred my nerves, while the doctor is occupied doing who the heck knows what, and then comes in for two minutes, with nothing more than a perfunctory apology, to tell me to come back tomorrow and do the whole thing over again! And then, they get to bill hundreds of dollars for the privilege of having done ABSOLUTELY NOTHING while making my life ABSOLUTELY MISERABLE. And we tolerate this because??????
My point is that yes, health insurance is a problem that needs addressing. But part of the problem is on the providers’ end. We’ve met a lot of doctors in the last 2 ½ years. Some of them are truly stellar physicians, who go above and beyond the call of duty. Our family practice doctor, for starters. My OB. The heart surgeon in St. Louis, and every P-ICU staff member we’ve ever met.
But we’ve also experienced many physicians who provide terrible service. A geneticist who watched me nurse and then told me to prepare myself that Julianna would never nurse. Who then wrote up a “report” on what he “observed” about my daughter—including a stereotypical Down’s symptom that Julianna simply does not have. A hearing clinic that bumped us to the end of the line four times at the last minute, with no explanation, justification, or apology—meaning that we lived with the fear that Julianna had hearing problems for five months after we called for an appointment.
No other industry works that way. This one shouldn’t, either.
Kathleen M. Basi 
She’s sick again?! Poor thing…and poor mom!
So sorry to hear that your adorable little girl is sick again! I hope she gets better soon!
Your post reminded me of when I was in the hospital after my second c-section. The doctor wanted me to chew gum (for reasons I won’t bore you with) and the nurse told me that I might want to have my husband bring some of my own gum because if she gave it to me, insurance would charge 7 DOLLARS A STICK. Not only is that an insane amount to charge for a stick of gum, I felt like she was putting it all on the insurance company. In my eyes, the hospital charges the insurance company (who then charges me) that much money *because they know they can.* And *that* is where I think we need the reform!
I most certainly feel your pain on the hours spent waiting in the doctor’s office for a 5 minute check. However, as the mother of a child with developmental delays, without the well-child visits, we might not have discovered those delays as early as we did. And for that, I’m thankful for well-child visits!
Fair enough. I guess we knew about Julianna’s developmental delays from day one, so for me, with two normal boys and a girl whose development we were are and always will be obsessively aware of, well child checks are a headache I could do without.
I am with Sarah M. While well check visits may seem like a waste they are definitly beneficial. Well check visits cannot only diagnose developmental delays but early diabetes and in some instances early detections of childhood cancers. Living in the land of St. Jude where I don’t go a week without hearing of a sick child, I am thankful to have to have the opportunity to keep track of my kiddos health. What I do think needs to happen is allowing only certain hours on certain days for well child checks. The rest of the days should be left available for those who need it most. While we have good insurance it still costs us $50 for minor med and $100 for ER where it only costs $20 for the ped. A much more affordable option when my kids are sick. It’s way too much about money anymore and not about helping and using your gifts. Off topic, but that’s why professional sports players make ridiculous amounts of money just bc the can run fast or shoot hoops and teachers make diddly squat to create future adults.
I was actually thinking about sports players, too. Or coaches, actually. And you guys are right; it’s not that a well-child check is without value…but there’s got to be some way so that people who are actually SICK can get in to see their doctors. You HAVE to have those appointments available. The other problem is that well child checks tend to be so much @ development and not medicine, and doctors are being asked to be experts in an area that is not medical. Development is different. Related, but development should not be the docs’ sole responsibility. I don’t know what the solution is, beyond parents as teachers & the like. But there’s got to be a way to leave appts. open for sick people!
Hi Katie,
Just a note to let you know that I love reading your blog! Your family reamins in our prayers.
Oh Kathleen. If there’s anything I hate more than my son being sick, it’s my son having CROUP. When he was a toddler, I gave him his epi-pen twice because he couldn’t breathe and turned blue from croup in the middle of the night. It is absolutely no fun. And then to have Julianna’s other needs on top of that… I also agree 1000% with your issues with health care. My sister had just come home from an ICU in CA b/c she was a recovering addict who tried to commit suicide. My mother called every psychologist in a 40 mile radius and finally found one who told her to call back every day to see if there was a cancellation. My sister hung by a thread for a whole month. I am praying for health for your children and for peace and wisdom for you to know what to do and when.
You know, we’ve never had her turn blue in the middle of the night. We always head for the ER before that happens.
Very scary.
What an awful experience for your family!
The first time it happened, he didn’t even show any signs of being sick! The paramedics came and asked if he had been sick and I was just totally baffled. When he had surgery at the Children’s Hospital (for something else) they wanted to know about those events before they intubated him. They said there must be something different about his airways that caused the stridor to happen so quickly and they chose not to intubate him.
Ooh, ick. That whole medical history is such a throwaway for most of us…but when you’ve got one with a history, boy, is it important.
Hope Julianna is better soon!
Sorry about your problems with health care. We don’t have a special needs child or any special medical problems, but we did live in Canada for a couple years. What I will say is that I found the canadian health care to be absolutely horrid!!! The doctors only gave you a 5 min appt, and you were not allowed to bring up more than one concern or complaint, if you had more than one concern you had to schedule another appt. There was a serious shortage of doctors and you were lucky if you could find one you could call ‘your’ doctor. Otherwise you were stuck going to urgent care (which was probably just as well anyway). Well child check ups were useless-I know you don’t like them in general-but in Canada you see a nurse at a health clinic for shots and if you see a doc for a well child check up its a cursory visit at best with no lead testing, no development screening, nothing that is considered routine here and it always seemed to me that the docs I tried out didn’t know squat about babies! You are not allowed to see a pediatrician unless you are refered by a family doc. The wait for a regular old visit-sick or physical whatever can be well over 3 hours. It can also be quick sometimes too. Someone miscarried their baby in an ER waiting room-no beds, no staff, hage shortage and wait issues at the hospitals. Rumor has it you have to wait months to get cancer treatments-etc-that really shouldn’t wait! In Calgary, they told me that I would be lucky if I could see an OB by 32 weeks (I assume that I would have seen one sooner if I had had complications???) And that I would not have had any choice what-so-ever as to who would be my doctor. And that they were so seriously shorthanded at hospitals that it was actually unsafe… Needless to say that is when I switched to a midwife-yes we had to pay for her-but at least I would be able to choose who she was and see her before 32 wks… (Nice thing in Canada – the midwives have hospital privileges so i could have delivered at home, a birth center or the hospital.) Anyway, I have no idea what the solution is, I just know that is was kinda scary in Canada and i am afraid we may be looking at heading down that path.
I hear mixed reviews of Canada. What you just posted is definitely not good! Why do you think it is that here and there, there’s such a lack of available appointments? Are we as a society demanding too many? Going to the doctor when we don’t need to? Are there not enough doc’s? What’s up? I begin to understand why people don’t bother trying the doc’s office–why they head straight for the ER. Although in September, we were at Urgent Care with a woman who had sat in the ER for six hours with the flu (the real flu) and hadn’t been seen yet b/c there were a bunch of trauma cases that came in from an accident. She finally came over to Urgent Care to be seen. Weird, huh?
my sister in law and her family lived in Canada for 5 yrs. They too said the healthcare system was horrid. They would come to the states to go to the dentist. And Americans think socialized healthcare is the answer?!?! Not even close.