The last few days have been a pain in whatever body part you'd like to identify. I have spent most of the business hours each day making phone calls and jumping through hoops, some of which were set on fire just for their amusement. I have spoken to 4 nurses or schedulers, none of whom know anything about the situation or my daughters needs. I get told the same thing by each "this is how our hospital works. Expect to hear from us in (an unreasonable amount of time). We are a busy big facility and it takes months to get new patients established". I would reiterate they must not have all the needed information in front of them as Emma was deemed a priority case and expedited care is anticipated. Insert kind cookie cutter response used to placate every parent who thinks their child is the most important in the world that that THEY deserve special treatment above all others'. By the way, I may have that attitude sometimes, yes. Emma earned it by having over 30 surgeries and beating a 10% chance of survival, so I DO have an important child who does deserve their special consideration. Especially since the specialist she just saw phoned the physician she is about to see and personally told him he needed to get her in ASAP.
So, with my frustration level approaching a 10 on the scale of: "Melissa looks normal colored in the face at a 0 to..... Melissa looks like a cherry tomato at a 10". No, that's not a sunburn. Breath deeply, find my happy place, because you can't strangle the person on the other end of the phone and getting short and snippy with them in contraindicated. Several deep breaths later (and perhaps a few screams of frustration) I call the next nice person and start the quest for tomato head all over again.
I then made several exasperated phone calls to my Mother crying about how much this is to deal with, how absurd it is to get anything accomplished at a big facility, and pleading for her to come over and help me put purple bows on 150 sugar cookie baggies for an order due in the next hour. With a timely visit from my Mother to tie pretty bows, the phone rings and it's the woman who told me "it takes months to get her on the schedule, you'll hear from me next week". Yes, an hour later after I told her she must be missing some information pertinent to her ability to get Emma on the schedule. But what do I know, I'm just a parent who feels over entitled to expedited care.
Amazingly, and mark your calendars with this one, I was right. The doctor does want Emma on the schedule ASAP and we have "worked her in" with the 5 physicians necessary to complete her evaluation and plan her course of treatment. (Said snidely) "Imagine that."
This is usually done with one visit, but one of the specialists is on vacation the week she sees everyone else. Who gave them permission to go on vacation!? The audacity. (that's sarcasm, folks). Emma goes for her first appointment on Tues the 31st to see a physician who specializes in vocal anomalies. The following Tuesday we go for a two night stay when she will have every test ever invented and see an otolaryngologist, pulmonologist, cardiologist, gastroentrologist, and an anesthesiologist. I think I missed one but that should be enough "ologists" anyway for one blog.
At the end of the "under anesthesia" scopes and workups, I will meet with the "ologists" and hear their proposed treatment plan. From there nothing will happen until after Aug 20th as her ENT is taking a vacation. Stinking vacations. Actually it will give us a nice repreave from the long haul down there and give us enough time to plan our strategy of attack to deal with our (mine and Emma's) absence from the homestead for perhaps 2 or more weeks. If for some reason her on vacation ENT decides she needs treatment while he is gone he will have one of his associates take over for him. I want him, so I am willing to wait if at all possible. He's supposed to be amazingly talented and I want the best for our best.
I've been in touch with Angel Flight to see if there are any options to fly us down. Jumping through their hoops has been fairly easy, but we are not sure her ENT will clear her to fly with the problems with her ear drums. Waiting to hear back from her "local" (GR) ENT to see if he says it's okay. I need to call and find out about places to stay. There's a RMH (Ronald McDonald House) there but you can only reserve for a stay which is over 4 nights. Anything under is first come first serve in one of two short stay rooms. I guess there's hotels that have "hospital rates" and we do know a family from church that live in Cinci. Good thing I know how to live out of a small suitcase!
I will continue to post as pertient information develops or if I need a benign place to vent. If you're someone who feels compelled to help I am always open to the following things which have long been on my wish list. Two million dollars (was one mil before but with inflation had to jack it up some), cure for the common cold, and world peace. (yes, that is a quote stolen from my Dad). If you're not able to offer one of those, well then forget it. Honestly, the RS at church is going to coordinate any meals or support we need, so if you do want to help please talk to one of them. The best thing you can do is send us your prayers, good karma, positive thoughts.......or money. Are any of you independently wealthy? I've been looking for a new surrogate family, perhaps some of you rich folks are ideal candiates. :-)
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