And the duck goes QUACK

Today was the first time I have cried in a while about Tylyn.

I realize that doctors are human and their errors are sometimes honest mistakes, even if those mistakes cost people their lives. Tylyn’s condition is not in a critical sense of life threatening as a heart attack or cancer might be, but the complete lack of compassion and acute care is disheartening.

Perhaps it is because of the road blocks her current doctors have put up. Inept at best I can not even stand to neither hear their voice nor their name.

It started with a call to Dr. Nightmare Allergist office to get Ty’s blood results. Normal. But wait- no Eosinophil count as there was no Diff. To make a long story short- why am I concerned with her count? The icing on the cake was when she relayed the doctor’s message verbatim about my referral inquiry that went along these lines:

Patient’s mother has been informed numerous times before that a referral would not be done until the patient has been reevaluated by our facility also will need to discuss with GI doctor about referral.

In addition he kindly added he was coordinating her care through Colorado with facilities and staff that he personally knew.

And might I add here- who gives a shit?

Perhaps it was teh nurse's icy tone after I said that I didn’t want to talk to Dr. Nightmare anymore. Perhaps she became annoyed about my concern of Ty’s Eosinophil levels remaining elevated for 6 months which can put strain on her heart and other organs.  

Perhaps my irritation continued with the inability to see the new GI doctor sooner. Though Ty’s stools are being questioned, it is considered a second opinion which does not allow prioritizing.

Makes you wonder how many people die waiting to get a second opinion.

Lastly, when I found out the real culprit for ordering the CBC without the diff, (although the hospital lab staff assured us the req did mean differential), would be the PCP, they regretfully informed me most likely the insurance wouldn’t cover a retest. This was due to her having two normal blood results back to back.

Remember the first one they didn’t do right either.

Morons would be a strong understatement for Dr. Nightmare, Dr. G and her PCP.

Sadness does not cover my emotion. If I had to describe it perfectly it would be a mixture of: despair, hopelessness and fatigue.

I look forward to closing my business and letting Daniel take over. How can anyone have the strength to interact with anyone after dealing with this on a weekly and sometimes daily basis?

I’m trying to stay positive but in the midst of the roof leaking because of the ex-husband, the crappy contractors that won’t show up or return a call (and when they do they tell me September) and my flipping car needing service constantly, I have little patience for doing teh grunt work of my daughter's health care.

It seems this is common though. A client yesterday told Dan her daughter was diagnosed with Fibromyalgia but that was only after fighting with doctors for four years while they had her do physical therapy. Her daughter was still angry about the doctor's ignorance. She is the same age as Tylyn.

I am currently taking a class for a new medical degree and am sickened by the description of the healthcare reform that promises a better system for the patient. One that allows easier referrals and electronic healthcare records that can be accessed instantly.

Our current healthcare system is fill with doctors such as these that are overworked, understaffed who have atrocious amounts of student loans and insurance costs and no time to provide adequate care that is outside what we can all find on google. What does this result in? Demanding to see a patient so they can write a referral. Perhaps it is their egotistical, self centeredness that makes the ability to see past their own opinion unattainable.

I’m not sure if he wants me to pay some more money one more time. My daughter has been to his office twice since he promised her a miracle cure. I’ve asked since June 1^st for a referral. I’m beginning to grow leery of NJH & CH if Dr. Nightmare represents the doctor’s there.

I think I need to do more research before a let another “duck” set back my daughter’s progess. But then again, currently we have no where to go but up.

The First Appearance of Symptoms

As I write this my mind is not fully on my words. It’s about the pending insurance request for Tylyn to be seen by an out of state doctor. I had to call the PCP about this request this morning. It has been stalled for a week because someone let it slip through the cracks. “Bullshit” was the exact words that the nursing staff used when they discovered it, incomplete and unsubmitted.

Time is the essence now; a request could take days, weeks or months. We are in limbo to buy tickets for our upcoming trip to Denver in October. Waiting to see the staff at Children Hospital and National Jewish for Tylyn’s conditions is requiring more patience than I can muster today. My Monday was spent connecting with folks at both sites to coordinate our visit, along with the financial advisers who firmly let me know. “Her insurance is not covered.” Yes I knew there was a referral needed. Yes I had requested it from my PCP. Yes I realized I would be responsible for full payment. A big sigh and a heap of more things to my plate, hence the follow up with the agitated nurse this morning.  

Yesterday was also filled with additional calls to Ty’s local doctors: the GI and the allergist. An early morning appointment with the Nurse practitioner at the allergist revealed a prescription for a sinus infection, another one for nasal spray, a change in course from Allegra™ to Zyrtec™ and some lifestyle changes, like no nightly snuggles with the puppies. I’m anticipating some additional directions in the future. We will also be starting a daily log of symptoms and overall feelings. The GI will see us the 6^th of July to the discuss results of the test that have been ordered by CH in Denver prior to her visit.

But I have digressed; this is only our current circumstances. In the beginning it wasn’t always like this. In fact mostly doctors ignored any concerns that I had regarding how Tylyn felt.

Sometime in 2005 Tylyn started reacting oddly to food. I say that with 100% certainty because when a child eats something and immediately has violent diarrhea I don't sincerely think that it could be related to anything else other than the food, especially when that particular food is avoided symptoms disappear.

It all started with Burger King™. We would meet Tylyn’s father half way between Binghamton and Rochester for Ty to visit for a few days, week or a summer block. Usually this entailed catching a quick bite either with us or her father’s family. At first I associated it with how quickly she ate. She could make swift work of her food before I had even seasoned mine. Even though that habit was unchanged from when she was smaller I scolded her to slow down.

Soon it became clear Burger King™ was a culprit no matter how slowly she ate. Soon to follow was Pizza Hut™. The latter devastated her because she LOVED pizza. Pepto Bismol™ began to make a more frequent appearance in our household, appearing on the counter, in the fridge and an occasional road trip. We avoided certain fast food joints and stumbled through these uncomfortable embarrassments of stops only minutes after just getting back on the highway.

In 2006, Tylyn had the pleasure of joining my parents, my sister and her children for a road trip to Florida. There was a phone call to me later on why I hadn’t warned them of the Burger King™ syndrome. Tylyn had just about cleared out the car. I realized that Tylyn was too embarrassed to tell anyone that eating food made her sick. Even as adults we hate discussing any uncomfortable facts about the posterior let alone being a preteen girl.

So we muddled through the next couple of years. Tylyn’s only steady boyfriend was the pink Pepto™ bottle that accompanied her to amusement parks, sleepovers and smuggled into her school locker.  She would occasionally get sick at friends houses after eating so she made an effort to get through everyday things we take for granted. Regular visits to the doctor would downplay any of our concerns.

In 2009 I started a new job and made friends with a woman named Sandy. As we complained about our jobs and discussed relationships, work and children, Sandy empathized with my frustration with Tylyn being sick. She shared that her son had also had many of the same symptoms as Ty; abdominal pain, nausea and diarrhea. Sandy recounted the ordeal she underwent getting her son diagnosed with gall bladder problems. Many tests, doctor’s visits and ultimately two surgeries later to remove his appendix and gall bladder at 16 reiterated that Tylyn’s symptoms were not normal and I shouldn’t let anyone discount them.

Back to the doctor we went. She had blood work done and they ruled out Celiac’s. All other blood work was normal so it was not pursued no matter how persistent I was. So we stocked up on Pepto™, avoided certain locations to eat and concentrated on sports and other things.

In 2010 Tylyn was very ill in school and wasn’t allowed to play a basketball game. She was very angry that the principal would not let her play even though the coach and athletic director wanted her to. The school’s reasoning? She had diarrhea. No amount of explaining to them would budge the decision despite my relaying that Tylyn frequently had diarrhea.

Later that night I came down with the flu and chalked it up to she really had been sick and I was being a stubborn parent and should have listened. If I only knew then what I know now.

Our highlight of her sophomore year was being inducted to Honor Society.

Above: Tylyn and I the night of her Honor Society Induction Spring of 2010

Up next: Things get ugly.