Here’s how I’ve spent today:
1. Filling out form asking for my daughter’s medical history, i.e. checking boxes indicating previous crises with nearly every organ system, and under “PLEASE DESCRIBE,” writing “Prematurebirthat25weeksPDAligationGradeIIVHRenalfailureAorticthrombus
OsteopeniaROPRefluxApneaBPDonPrevacidandPulmicort.”
2. Waiting in germ-infested waiting room with wriggling, impatient baby.
3. Watching baby, sitting in a small audiology booth, fail utterly to turn her head to sound.
4. Holding same wriggling baby while an audiologist attempted variety of other tests involving sticking various probes in baby’s ears.
5. Being told that, in the end, none of the tests were of any use, due to aforementioned wriggling.
6. Being told that we will need a different test altogether.
7. Being told that no, we can’t do it today, because it is done in a hospital under sedation, and we weren’t scheduled for that test, only THESE ones.
8. Wondering WHY we weren’t scheduled for that test, i.e. why no one thought that a six-month old would have trouble sitting still while small plastic pokey things were inserted in her ears, pokey things that emit both sound and small puffs of compressed air.
9. Feeling fairly certain none of these people had ever met a baby.
10. Returning to germ-infested waiting room to wait for next section of appointment.
11. Being told by ENT that because baby passed her initial hearing screen when she left the NICU, the problem is more likely to be fluid than nerve damage. (Hooray!)
12. Holding terrified, SCREAMING baby while ENT removes wax from baby’s ears with metal instrument. (Boo!)
13. Having to hold wild baby so hard I am certain I will snap several of her bones.
14. Watching ENT peer into baby’s ears while wearing silly-looking strap-on metal disc over his eye.
15. Being told that it looks like there may be a little fluid in baby’s left ear, but he can’t be certain.
16. Being assured that sedated test will be able to tell us clearly what is going on—unlike, you know, THIS APPOINTMENT.
17. Feeling exhausted.
18. Being told that we will probably not be able to get into hospital for sedated test until three weeks from now.
19. And that after THAT, we will need to return to the ENT, to Make a Plan.
20. Feeling briefly homicidal.
21. Being told to go home and wait, and someone will call me within 48 hours to schedule the appointment.
22. Refraining from telling ENT exactly what he can do with his 48 hours.
23. Speeding home muttering to husband about Time, Waste Of.
24. Calling the hospital short-stay surgery unit myself.
25. Being informed that their first opening is not in three weeks after all!
26. It is in SIX weeks.
27. And that Simone will need to see her pediatrician no more than seven days before the procedure.
28. Which will begin at 7am.
29. Arguing that taking a 25-weeker to a pediatrician and then a hospital at THE VERY HEIGHT OF RSV SEASON is possibly not a wise idea.
30. Being told it is Policy.
31. Crying.
32. Eating large plate of pasta.
33. Thinking if President-elect Obama were there, he would fold me in his spindly embrace, give the Short Stay Unit Coordinator a firm but gentle rebuke, and she would damn well find me an earlier appointment.
34. Leaving message for doctor from NICU follow-up Clinic who referred us for testing in the first place, pleading for mercy.
35. Waiting by the phone.
36. Hearing nothing (Much like baby! Ha!).
37. Writing this.
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INFURIATING! It’s hard not to feel like common sense and decency are dead.!
Hugs to you and Simone. Please let her know I don’t like it when people put things in my ears either.
Bureaucracies are so frustrating. It seems mean to make a scrumptious baby like Simone deal with them. I’m pulling for you all.
I’m so sorry you still have to wait for answers–how tremendously frustrating. Let me know if there are people I can kick in the knees to get things moving faster for you.
Oh, I feel your pain. I am in hospital bureaucratic hell myself right now. Dealing with daughter’s possible major neurological problems (maybe? who knows! wait and see they say..) having to have a CT Scan done on a sedated one year old, but not told the results, make an appt with the Ped neurologist. And don’t forget my other daughter’s heart procedure the week before, still talking to doctors/hospitals about that… and then the unpaid bills from son’s hospitalization a year ago. I could go on and on. I’m sorry you’re dealing with this – i hope it works out and you get some (good!) answers soon.
I wish I could help you Alexa! If that were happening here, Our Helen DeVos Children’s Hospital would not wait 6 or even 3 weeks to get Simone in, she would be gotten in immediately. I am very sorry, and yes, get back to the person who referred you in the first place, this is very distressing. I hope it is just fluid, because then Simone could get tubes put in and hopefully, everything will be hunky dory! I am remembering something you shared on this blog – when Simone was almost ready to be discharged from the NICU, you sent a small video of her in your arms, making various baby noises and then you said “hi honey” to her and she responded with a smile. So, I know she can hear!
I am continuing to think of the Flotsam family and sending good thoughts and hope your way! And yes, President Elect Obama WOULD do something to help you, he’s got little kids of his own.
This whole process is complete and utter BS!! I hope they figure out a way to bypass *policy* and make it work for you!
Holy frustration!
I was waiting for word from you. I was not waiting for this! Horrid insensitivity. So sorry you didn’t get the answer you deserved today.
Fingers still crossed that it’s fluid.
I’m so sorry about this…what a crappy day. Maybe your ped and the referring doc can help smooth this out? Like maybe the ped will see you in the parking lot?
I feel as though i know a tiny bit how you feel, when my pediatrician wanted me to see a specialist regarding my daughters hemangioma (since they can grow rapidly and possibly scar her beautiful face) I ASSUMED incorrectly, that I would see a specialist in a relatively reasonable amount of time (hemangioma’s you see do the majority of their growth in the first 6 months of life, so in my way of thinking if the doctor HAD wanted to do something to possibly stunt its growth the sooner we get in the better)…. however in July I was told (after waiting 2 weeks to get the call back for an appt) that the earliest they could possibly get me in was DECEMBER 1st!! A full 4 1/2 months and oh by the way my baby would be 6 1/2 months at the time so PAST the age where the rapid growth occurs….. I sobbed…… I knew that the doctors may well have decided to do nothing even if we had gone the very same week, but I wanted to know at the end of the day that if my daughter asked me later, why I didnt do anything during the growth phase I wanted to be able to say that I went to a specialist and I followed their recommendation……not that I tried to get in and COULDNT!
I got lucky, based on my doctors referal that my daughter be seen ASAP, when they had a cancellation they called, and I was able to get in a MERE 5 weeks. It seems like in all avenues pediatric doctors are in short supply, while we have a wonderful childrens hospital here, the specialist are still WAY overbooked. I was fortunate that my daughters acid reflux was of the “normal” variety because I also hear tales that the pediatric GI department has a minimum of a 4 month wait. SOOOO FRUSTRATING!
If you could call them back and ask if you can be placed on a list in case of cancellations…. I know its a long-shot, but perhaps you could get a magic call like I received.
So mad with all that waiting, and thinking that taking preemies to hospitals in RSV season should NOT be policy.
Will be praying for you.
i have only recently started reading your blog and have managed to read back to get a brief synopsis of the story of your baby girl and i just want to reach out and hug you today. this sounds like a most frustrating day and one that you surely did not need. i am thinking of you and sending some warm thoughts your way.
What a frustrating experience – especially when you were hoping for more definitive answers today. . . I’m sorry.
Ugh … briefly homicidal feelings have been granted longer stay for good reason. I’m so sorry.
I really enjoy your writing, though I am new to your blog. I would like to suggest going over that coordinators head until you get the answer you want.
You might try someone called the patient advocate, I have been through the hospital wringer myself.
Also, I do not know where you are but you might be able to find a doctor to come to your home.
http://www.aahcp.org/physicianreferral.shtml
That is a link I used to find the doctor that cared for my mother. It was wonderful having the doctor come to our home instead of exhausting Mom and exposing her to all kinds of germs. In my experience they also were much more accessible, and went above and beyond my expectations.
Even if you have to take Simone to the specialist it might be helpful to have a GP that visits.
I would feel homicidal as well. I’m so sorry. Hang in there. You are a wonderful mom doing the best you can.
Arg! No! Imaginary friends in the Internet join you and President-elect Obama in demanding resolution to this matter!
Hey, Friendly Neighborhood Audiologist here. I’m sorry it didn’t go that well today. I should have suggested cutting straight to the ABR (BAER) test, but b/c of the sedation, you have to have a medical referral and was hoping your ENT would put you on the fast track to that. The “small puff of compressed air” test should also have given some indication as far as the presence of fluid – were they able to get tympanograms?
Is there another place you could possibly go for the ABR? Someone who could see you sooner?
I agree they need to design these tests with children in mind. Hang in there!
Oh I am so so sorry. Was thinking about you two today.
Oh Alexa! How utterly frustrating. I so feel for you all. We have also done similar preliminary appointments, otherwise known as torture appointments, only to find we have to do something/go somewhere else. I am getting good at asking the right questions to help avoid that now. My only suggestion, although it is not as if you need assvice, is for you to demand to be seen earlier. I have quite the name for myself (mostly as “bitch”) in certain medical circles because I am one to continue calling until we get what we need. I was even footnoted on my babies’ charts as being “overly involved” because I would not just let the doctors continue to push the babies aside. (insert evil, satisfied laugh)
Hugs to you. I do hope that the NICU people can help get you in earlier than 6 weeks. That is just rediculous.
Stacie
Ugh. Waiting bites, it seriously does.
If the NICU doesn’t come through, try and see if any of the early intervention people have connections?
But 6 weeks isn’t bad. The first time we tried to schedule a sedated ABR they blithely told us it would be 3 months(!!!) and were surprised when we objected.
Oh no, Alexa, how completely vexing. I’m so sorry.
what an awful day. Bloody idiot doctors and administrators ought to be shot. Hope you can find a way through the red tape.
When I’m stuck I find that threats help. I often call my insurance company and tell them, “If you don’t put someone on the phone that can help me — I have my cell phone in my other hand — and I’m calling the California Insurance Board to report this.” 3 – 2 – 1… and supervisor. It’s like magic. Sad, sad magic. I’ll spare you the details of what I’ve been through to undo me in these moments.
Perhaps you could tell them that you’re calling your local news channel so they can do a profile called “Health Care in America,” or at least tell the office that they are?
Whatever happens, I wish you and Simone the very best.
That’s taken the shine off the day with a vengeance. Why schedule tests unsuitable for a small baby? Sometimes it makes you wonder who thinks up these things. I hope so much that you can arrange an earlier appointment for the correct tests. Thinking of you all with hope – lots of hope!
Gah! Fingers crossed that the beaurocracy get their heads out of their arses and come up with a Plan that is better than the current one.
Oh this thoroughly REAKS of incompetence and bureaucracy. I would have assaulted someone, I am sure. How maddeningly frustrating. How galling that outsiders never seem to have any sense of urgency.
Hang in there, it seems there may be several lights at the end of this wiggly tunnel.
xx
URG, that is truly maddening, after all the uncertainty and waiting you’ve already been through. Poor Simone, poor you, both being made to cry. You were supposed to get the answers today. BAH, hospital!
Do you think that there’s any possibility that Simone might be orchestrating all this? Maybe she’s enjoying the peace and quiet? Any chance that she’s laughing at you whilst you are telling the bureaucratic (insert appropriate description) what you think of him/her?
Hang in there Alexa! This too shall pass.
xxx, Sara
Are you sure you don’t have military insurance? Because I was sure only THEY could pull off this level of incompetence. Gah, I’m sorry. I hope things speed up for you. What a mess.
I am glad however, to hear that it’s quite possibly fluid and not nerve damage! That’s encouraging! I’m going to keep hoping for that.
I was so frustrated for you, and then I read your penultimate line (“much like baby…”) and started guffawing. Having followed my husband through the gates of cancer hell and back, I know that the absurdity of medical bureaucracies is overwhelmingly exhausting, but it can hardly be beat as a source of dark humor. Which you have unfortunately discovered in spades.
I have two pieces of advice from The Cancer Time. First, ask as many questions as you need to understand what they are proposing next so that you can resolve little incompatibilities like baby plus a test that requires patient to be still. Second, don’t accept ridiculous waiting times in the first instance. Push back, call your primary doctor, call a new doctor, call the hospital. Maybe the wait really is six weeks, but they should have to justify that wait to you when you have a premature infant who is not supposed to be out at that time of year and who is in a critical period of language development. She needs a solution as soon as possible so that she can get about the business of learning how to talk and they’re dilly dallying around with inappropriate tests and we’ll call you in 48 hours and nothing is available for six weeks? I am outraged right along with you.
OMG. Would you STOP lifting things from my life, already?
Seriously, welcome to the system, steep learning curve and all. I don’t really have any useful advice, except to say that once you have your diagnosis, things DO move faster.
Sigh.
Sometimes the ped.’s office can get these things pushed up- since you are just Joe Public (close relative of Joe the Plumber and Joe Sixpack), they tell you six weeks, but when the doc’s office calls, they can usually work something out.
I also do agree, even though it is frustrating, to do the other tests first and save the “sedate a baby” test til last, but someone could’ve warned you. Do you have a family support network in your area?
Oh Alexa. I’m so very sorry. What a torturous day, and how utterly aggravating. Damn bureaucracy.
I am very sorry about all this, except that I love the phrase “spindly embrace” and am glad I got to read it.
Also, can they at least provide a recreational level of sedation for you and Scott while they uncluster this particular f-up and find Simone an earlier appointment? For the test they should have scheduled in the first place?
Ugh. I know of this sort of thing. P had to have some bloodwork done because of a suspect rash when she was just over a year old. She was not at all fond of the experience, screaming and writhing so much that they couldn’t keep her still long enough to draw any blood. Despite being in the Children’s wing of the hospital, it was somehow my fault that my 13 month old wouldn’t sit nicely so that they could stick big needles into her. The nerve of that kid. Does she not appreciate the rigours of medicine?
On another health issue of P’s we have had two hospital appointments for which we had to take off work to be told the same thing at each 5 minute appointment, along with the advice to make yet another appointment. Biggest waste of fucking time.
Sorry to hijack. This was my long-winded way of saying that I get it. I hope you hear back shortly and can make all of this happen right away and without further issue.
You’ll actually be glad they scheduled you at 7AM, since if Simone has to be sedated you won’t be able to feed her ahead of time. (With my son it was 4 hours ahead for breastmilk, 8 hours for anything else.) So, that’s good! The rest…um, yeah, sucks.
Either they all use the silly metal disc thing, or you saw the same ENT we did (I think he thinks it is cool), in which case, he comes highly reccomended. Use the supervisor tactic. Let them know that the long waits are just that much more risky for her, and don’t take no for an answer. If she has to be in, make them at least give you a private waiting area, like in the room itself.
And I agree on the early thing, cause the no eating thing sucks.
Blargh. My sympathies. I do love the ittybitty space they give you on medical history forms, which are never big enough for all the things that have happened to our ittybitty children.
The tympanogram (puff of air) should tell you about fluid.
We had a pass on the screen in one ear and an ENT tell us that it was going to be ok because our daughter had small ear canals. It turned out that it wasn’t. She has a severe hearing loss. Be very critical.
Our audiologist that we love (we finally found one we loved after having the one from hell!) didn’t really want to sedate. She suggested waking our daughter early and having her hungry so she’d go to sleep on her own before the test. It worked for us after the hearing tests from hell (those were some of the worst days of my life).
I’ve met lots of parents whose kids passed the screen in the hospital. Please make totally sure it is accurate. Not trying to be negative, but this is so very important (which I am sure you know and are doing everything possible)!
Hang in there. I am thinking of you and Simone.
GRRRRRRRRR. Am so ANGRY on your behalf right now. I know you are a tremendous advocate for your daughter, but I remember how infuriating it was to insist that NO, G couldn’t come in at 10 am with all the other sick kids. And that YES, we needed to be put in a clean, no other kid in it before us exam room and NOT in the waiting room. Because that’s the way it is and I would prefer my child not DIE, so SUCK IT. Oof. So much energy that could be going to Simone instead. Blearg.
Is Simone getting Synagis shots to prevent RSV? They’re super expensive and insurance companies make you jump through all sorts of flaming hoops to get them, but I think it’s a good idea. Of course, I’m not a doctor or an insurance flack… but I do have twins, born at 34 weeks, one qualified for RSV and one (for no good reason at all…) did not, and she (of course!!) ended up in the hospital for two weeks, struggling to breathe with tubes sucking snots out of her lungs. Get the shots! Be mean to the insurance people!!
See if you can get a doctor (ANY doctor) to call and get the scheduling moved up – they respond so much better to anyone that has MD after their name. Also, find out who the main scheduler is (or the scheduler who actually cares) and ask, “when is the best time to call to find out if you have a cancelled appointment? Should I call you back every other day, or should I call every day? Is am or pm better for you?”
Also – you can come to Chicago, if insurance permits. I know great people at both Rush and Children’s Memorial, where both my daughter and son have had sedated ABRs.
So sorry. This sucks!
I feel your pain. We were told the wait for a sedated ABR was 4 months! Instead I drove 100 miles to another hospital. Keep calling and ask to be on the cancellations list.
When you do get in, ask if they are sedating her or SEDATING her. I was told our daughter would be sedated and they gave her something barely stronger than benadryl that did NOTHING. In the end they had to put her totally under anethesia to get real results. Oh, and that was the 4th time we went in for that test before they finally got serious about it.
I don’t know any audiologist that would put a 6 month old in a booth. That’s a bit ridiculous.
Ugh! I’m frustrated reading this! I hope something opens up, or drains out, or gets better and you can laugh in their faces.
Oh, what a rotten day. I’m encouraged that you still have a sense of humor, though.
“36. Hearing nothing (Much like baby! Ha!).”
Hopefully, that will help somewhat.
Wow. That was just alot of crap you went through. Hang in there.
Argh! I checked back so many times yesterday to hear what you’d found out. That is so frustrating and stupid! Who else can you get to advocate for you? Sounds like NICU is your best bet, so I hope they can pull some strings (or kick some ass?)
I am just excited about that fluid, and very optimistic. I understand your frustration, but I have a really good feeling about all this ending well in the end!!!
Oh, Alexa, I totally understand your frustration. We were told to bring Owen asleep to his 6-month eval. Of course, he fell asleep in the car on the way there and woke up just as we were being brought back. It took forever to get the stupid test done.
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