This is for my daughter Skylar who loves your shirt Hating me Won’t Make You Pretty. She’s been through hell and has made it out to be a beautiful disaster. I named her Skylar after Vince Neil from Motley Crue’s daughter Skylar that died of stomach cancer at age 6. Little did I know my daughter would go through something very similar like the name Skylar was tied to stomach issues or something.
When she was 4 she started complaining of stomach pain a lot. We took her to doctors who tried Miralax saying she was constipated. Then they said it was acid reflux so she was put on Prilosec. When that didn’t work they tried different acid reflux meds. They also put her on probiotics. Blood tests and fecal tests showed no parasites, H. Pylori, etc she had over $12,000 in blood work done which only showed milk and carrot allergies which she hated milk after stopping formula as a baby (which she had to be on soy to even keep down) and she hated carrots so we told the doctors how she was already not eating these things so that’s not it.
So off to GI specialist we go where it only got worse.
By age of 9, I was loosing my daughter. She stopped playing basketball, swimming, and other activities because of the pain. She would curl up in a ball on her bed and cry the pain was so bad. She was missing a ton of school.
GI put her on gabapentin saying it was abdominal migraines. A bunch of other meds were thrown at her to the point she was taking a handful of pills twice a day. It was beginning to feel like my daughter was battling cancer but all the tests were showing no indicators of that. CTs, ultrasounds, MRIs all showed nothing.
Pain specialists told her to do controlled breathing and other exercises that made it worse. They told me my daughter was just imagining it. Doctors started telling me there was nothing else they could do. We started feeling crazy.
So we switched doctors to the doctor I work for now after moving from Iowa to AZ. I’m a pediatric medical assistant now. Went into the heath field because of massive immune issues my other son went through (whole other story) and now my daughter with this ongoing battle. I was tired of being in the dark. I learned a lot of things in school including about the gall bladder. This would be priceless knowledge.
She was getting sick and in pain 1/2-1 hr after eating. We had tried cutting out fatty foods to see it that helped it didn’t. We even had her blood tested to find she was A+ which are known to have a lot of stomach issues so we followed the A blood type food diet fad. Didn’t help. But it had the symptom of pain and sickness after eating I learned was classic gall bladder. The gall bladder can be hard to diagnose as it’ll act and look like it’s working and skirts all the tests.
So the doctor I work for began communicating with the GI specialist and they knew each other very well from before us, which also helped. Gall bladder Hida Scan test was done which showed hers was working at 43% which is considered normal. But what happened when the test makes your gall bladder contract my daughter grabbed my arm and started screaming saying mom that’s the pain!!!
And she’s in constant pain for rest of the test. We go back to GI doctor and explain what happened during the test. I also pleaded with her to refer us to general surgery to see about removing gall bladder or at least do exploratory laparoscopy to see what they find. Forgot to mention by this time my daughter had also had 2 endoscopies and 1 colonoscopy that showed nothing. My daughter is now like a cripple walking into school hunched over and holding her stomach all the time. Heartbreaking to drop your daughter off to school that way and u have to because she’s missed so much. Also by this time I had forgotten what my daughter smiling looked like or what her laugh sounded like I had not seen or heard for so long.
We go to meet Dr Heidi Cox GI specialist for Banner peds hospital. I’m in my scrubs because I have to go to work after appointment. I immediately get attitude from her that all tests have shown nothing and there’s nothing she can do. I start to explain how my daughter is dying in front of my eyes and if you take a step back and just listen to her and the symptoms it’s gall bladder in some way regardless of what tests say and show. She sat back and looked at me. Sometimes doctors trust tests too much and forget to listen. But when I said that, I pulled her back to simple med school basics they teach you. And she sat there a minute looking at me and said ok. You don’t need the gall bladder there have been cases like hers, though few, that you are right so let’s try it. you’ve tried everything else.
Surgery day couldn’t happen soon enough. I was praying this was it because my daughter couldn’t take the pain anymore. Screaming in pain all throughout the day even though she’s barely eating by now because she knows it will hurt her. We had to wheel her around at the zoo in a wheelchair the pain was so bad she couldn’t walk.
She goes into surgery and they say it’ll be about 1/2-1 hr real quick. An hour goes by. Then 2. Then 3. I’m starting to loose it not seeing her name on screen as coming out of surgery. Finally Dr. Cox comes out. She sits down and says she’s out of surgery but what they found was a mess. She had adhesions (white webbing tissue) all over inside her. Her gall bladder was twisted all up and ready to burst. Her intestines were all twisted and tied higher in abdomen than they should be into her diaphragm and squishing her lungs. Her appendix which is supposed to b on your right side between your belly button and right side- was in up in her shoulder and ready to burst.
So she said we took it out too because they never would have found it was appendix total wrong spot if it had burst she would have died. And you don’t need it either. They took out all the white adhesions and had to totally relay out her intestines. Dr. Cox told me they only see 1 or so case like this a year. It’s genetic to their knowledge because someone normally only gets these as scar tissue after many surgeries. But my mother and I also had them when they did our hysterectomies from endometriosis (that was a similar battle we went through with doctors saying nothing showed on tests and we were imagining our pain- I could have used our stories too for this). But adhesions don’t show on tests. Some radiologist don’t know how to read images. And our imaging has a long way to go to get better.
How did they not realize her appendix was in her shoulder?! How did it not show the gall bladder twisted?? How did they not realize her intestines were too high? Even one chiropractor we saw mentioned how tight her abdomen was and how organs were too high he tried manipulating them down into her lower abdomen. How did all this fail? How have doctors forgotten to listen to the patient and remember the basics?
My daughter had zero pain after surgery, she ate like a horse so excited it didn’t hurt anymore. She hugged Dr Cox when she came to check on her the next day and told her she was her Angel. We bought a Angel figurine and gave to her to always remember Skylar. I told her thank you for saving my daughters life. Skylar is now smiling, laughing, and playing life to the fullest. It’s been 2 years almost now and zero pain ever since. All the doctors involved learned from her. The primary doctors involved followed her case and told me later they learned a lot from Skylar.
So when your kids tell you something is wrong and they are in pain- don’t stop fighting for them. No matter how many doctors tell you otherwise. No matter how many tests say otherwise.
This is why she is one beautiful disaster that is out kicking butt in the world still today. And I right along side her always.
I’m including some pics from the surgery they gave me. All the fatty white tissue is not supposed to be there. The gall bladder is the dark blue/purple smaller organ and the big red one is the liver.