I had hit the snooze button this morning and had just cuddled back against my boyfriend to steal a few extra moments of sleep before heading to work when I realized yesterday I should have requested a requisition (req) for a Chemistry panel.
I had asked for a CBC slip from her PCP to check her Eosinophil levels because she has been so sick. She is off the steroids for a little over a week now and I wanted to know if they had climbed back up. I was instantly awake as I had made a mistake of not requesting a Chemistry panel as well. I wanted this mostly because of my interest in her potassium (k+) levels.
To say the least Tylyn’s conditions have made me a bit paranoid.
Symptoms of low potassium are:
Weakness or Muscle Cramping
Tiredness
Tingling or Numbness
Abdominal Cramping
Constipation
Palpitations
Passing large amounts of urine or feeling thirsty all the time
Fainting due to low blood pressure.
Delirium, confusion or hallucinations
Granted Tylyn doesn’t exhibit any of the symptoms other than the Abdominal Cramping & Tiredness but then again they were the only symptoms she exhibited the night she was in the ER. But I guess I’m getting ahead of myself now, perhaps I should start where our nightmare REALLY began.
March 2011
I love March. It’s the end of winter and of course Tylyn’s birthday. I was really looking forward to her birthday even though last year was the iconic sweet sixteen. My ex husband and I had separated on that day, so it wasn’t held to the highest esteem within our family. In addition she was almost recovered from the bad sprain during basketball season that landed her in the ER.
 |
| Above: Tylyn in the ER at MMH after spraining her ankle at a BB game |
This year however we had managed to wade through several bouts with the flu and purchased her prom dress. My family came up two day’s prior to her birthday on Saturday, March 5th. As we ate, laughed and played a fun board game, attention shifted to Tylyn’s prom gown. Due to my family being out of town we all piled in my parents van and went to the shop so she could showcase her dress.
After a brief stop there we hit a couple of stores and Tylyn expressed not feeling well. She stated she had to use the restroom with her usual post eating ritual. When my mother delayed being in a store Tylyn vomited in the car. We returned home, her going upstairs and leaving me to clean up the vehicle with my dad before my family having to return home in it.
She was sick the rest of the night. Pale and violent intervals of vomiting and diarrhea. Sunday she was still ill, no appetite but the sickness had subsided. Diarrhea was unchanged. I restocked our supply of Gatorade which was normally reserved for her sporting events.
-Monday she tried to eat something but again became violently ill. She stuck with Gatorade.
-Tuesday Tylyn watched TV and ate nothing, only trying to keep Gatorade down.
-Wednesday she felt great, stayed home and ate little, keeping goldfish and Gatorade down.
-Thursday she went to school and ate a little, feeling the best she had in days.We went out for dinner that night and she picked at a couple of fries with gravy, some cottage cheese and sherbet. She was happy, REAL food.
 |
| Above: The day she ended up in the ER |
After we came home I was raking the front yard and she came out on the porch telling me she had thrown up her dinner. She proceeded to tell me she was going to bed. It was 6pm. Not uncommon for the last few days.
Some time later I was in my office and I received a call from her. She complained of stomach pains and needed me to come upstairs. A quick assessment of her made my heart go in my throat. I went down and let Dan know that I needed to take her to the ER. I was thoroughly convinced she was having a gall bladder attack. In her words she was having stabbing pain under her rib in her upper right quadrant. Off to the hospital we went with her fading in and out of consciousness. I took her to our rural hospital due to the severity of her sickness as opposed to taking her to Strong or Children’s in either Rochester or Buffalo.
At MMH the night quickly became agitated as I tried to sign her in and Tylyn proceeded to throw up in the garbage can. It was flu season and evidently I was an annoying over paranoid mother. The nurse became more agitated when Tylyn wouldn’t respond to her questions, her eyes rolling back in her head. As a photographer and someone that had worked in the medical field, I snapped some pictures just in case she took a turn for the worse and nobody did anything. Later that night I told the nurse her fingers were blue and as they walked away they said over their shoulder “Perhaps she’s cold.”
 |
| Above: Ty sick in the ER |
 |
| Above: Tylyn's Blue thumb and nail beds |
It was three hours before we were seen. Five before we had blood results. Her potassium had bottomed out. They needed to give her IV fluids of 30MEq. Dan stayed with her while I ran home to get some sleep sometime after 1pm. I had to work the next day and was quite irritated when I found out they released her without her follow up labs.
After some hassle on Friday I managed to get my hands on her lab work. Everything was all over the place. She had bilirubin in her urine (not acceptable in any quantity) and had some immature WBC’s. They were only slightly higher but was a bit alarming as there were promyleocytes, metamyleocytes and myleocytes coming right out the bone marrow.
I know that sounds like a foreign language to most people but luckily for me my degree was in Medical Laboratory Technology. The three types of myleocytes in her blood are normally found in the bone marrow and mature there prior to being released in the blood. An increased count warrants a retest or at least a notation.
Results in hand I confronted her PCP who brushed me off. He said the more you had the better. I looked at him incredulously wondering if I should have continued my education to even begin to receive adequate treatment for myself or my family. He said that this is the first time he had heard of Tylyn’s diarrhea problem even though it was her regular doctor’s office.
The next morning the PCP’s office called and said the doctor had reviewed Ty’s charts and we needed to come in that morning, free of charge of course.
That visit revealed that he wanted to test Tylyn for Chrons and gallbladder disease. I had a bit of satisfaction at the look of concern on the doctor’s face when Tylyn revealed she hadn’t had a normal stool in over a year. It seemed someone finally took our “complaining” serious. We rejoiced even though he suggested seeing the GI whom we had already set an appointment with on Tuesday. The PCP said if the GI didn’t order the Barium enema, Sonogram or HIDA he would. Relief flooded us. An inch of progress and surely the knowledgeable GI doctor out of a prominent Gastro group in Rochester would agree that this was gallbladder issues. She had all the symptoms of GB disease and only one of Chrons which would be diarrhea.
Tuesday finally arrived, only to be a disappointment. The doctor ignored the lab work I brought with me, discounting any data that it presented. He interviewed Tylyn about sexual or mental abuse, suggested a sonogram and an endoscopy but refused to rule out Chrons or do a HIDA.
What was his focus in our 15 minute consultation? Whether Tylyn was emotionally distraught over a recent break up with a boyfriend or did she know what irritable bowel syndrome (IBS) was? He handed us information about the south beach diet and suggested an allergist. Through gritted teeth I informed him that she already had an appointment on Friday for an allergist and that she couldn’t have IBS if she didn’t eat anything. She had lost 13 pounds in 10 days at this point. Prescription anti-diarrhea medication did not even touch her condition.
He had nothing to say to her response that she had 4-5 BM on a good day, 15-20 on a bad day.Nor did he comment about if it was IBS or Chrons she should receive relief when she wasn't eating.
We left the doctor’s office a bit stressed and went to get something to eat. Ty ate off the south beach diet menu. We headed back home and Ty vomited up her entire breakfast. Like a trooper she wanted to get her blood work done that was being repeated to check her K+ levels. I scheduled the Barium enema for the next day due to her being mostly cleaned out from the constant diarrhea.
Wednesday the 16th she underwent that procedure and missed another day of school. The results would later reveal no Chrons.
She attended school on that Thursday, the first day in week. Barely enough to keep up with two college level classes and three AP classes. Her course load was heavy- PreCalc, Spanish IV, AP English, AP Bio & AP US History. Her grades would suffer more before this was all over.
Friday revealed a slight skin allergy positive result to Milk. The allergist ordered an IgE serum test for milk and Anti- Islet Antibody test along with another antibody blood test. We planned on doing these on Saturday but it was moved to Monday after the PCP called us to tell us Tylyn had abnormal blood results. They needed to repeat testing. Her Eosinophils were 9% with the immature WBC’s still present.
Monday we had all her blood work done. The results were accidentally sent to the allergist which in turn delayed the PCP to revealing them to us. When they finally did we were referred to an Hematologist/Oncologist. The PCP who dismissed my concerns the first day after her being in the ER had no problem telling me over the phone they wanted to rule out Leukemia. I did not tell Tylyn but rather coordinated questions through my sister who works as a Counselor in an end of life clinic for cancer patients.
A little relief came from my sister’s boss and coworkers; doctors in the profession who felt that it wasn’t leukemia but rather a secondary reaction to something else that was going on in her body.
The Hematologist/Oncologist ordered repeat testing along with a RA Factor (for rheumatoid arthritis), ANA (anti nuclear antibody for Lupus and other autoimmune diseases) and another Celiac test.
Blood work was finally normal other than the ANA coming back slightly positive. To date no one has paid attention to this result.
Also tested this month:
Stool Samples- for Ovum & Parasites, C-Diff and Campylbacter
Multiple Blood Tests
Up Next: The Testing Continues
No comments:
Post a Comment