One Word Wednesday: PERSISTENCE

My sweet friend, Starr started One Word Wednesday on her blog back in 2014. She is kindly allowing me to use her phrase. You can read more of her blog here.

Today, my one word is persistence. The definition of persistence is firm or obstinate continuance in a course of action in spite of difficulty or opposition.

I used to think if you looked the definition of persistence up in the dictionary, you would find a picture of my sister. Tiffany has persistence down 100%. She drove me nuts growing up because if she wanted something, she would beg me until I would finally give in just so I didn't have to hear her beg anymore. Her persistent nature has served her well even as an adult. I am thankful for Tiffany's persistence, mainly because I have learned from her example and that has in turn finally brought about diagnosis and treatment for Meredith.

Anyone that knows our family is aware that Meredith has struggled with multiple medical issues since birth. She was diagnosed with atopic dermatitis at 3 months old, which has worsened as she has gotten older. By age 4, she was diagnosed with severe atopic dermatitis and had been on oral steroids more times than I can count. When Meredith was 6 years old, she began having episodes of severe abdominal pain, nausea, vomiting, and fatigue. We began seeing a Pediatric Gastroenterologist, who decided that Meredith needed to have an endoscopy procedure. After that procedure, we were informed that she was allergic to gluten and instructed to remove it from her diet. Meredith's pain improved, but not completely and less than a year later she was struggling again. At that time, the doctor performed a colonoscopy and endoscopy on Meredith, again telling us that gluten was her issue along with irritable bowel syndrome. We were told to continue with the gluten free diet and also provided a prescription that was supposed to help spasms from irritable bowel.

Last year, Meredith was hospitalized at UNC Chapel Hill. A specialist and his team of residents were responsible for her care. They first told us that they thought Meredith may have an intestinal blockage. She had blood work, x-rays, and other tests. They did not find a blockage, but then said that they felt Meredith could be constipated. I knew this wasn't the case and told them so, but they were not willing to listen to what I had to say. They insisted that Meredith begin drinking juice with Miralax. When she wasn't able to keep any of that down because of the pain and vomiting, they placed an NG tube through her nose to her stomach. When I think of that experience, I still cry because it was awful and Meredith should never have had to go through that. The next day when they returned to check on her, they asked if the Miralax worked. When we told them that she had not gotten up all night, nor had she used the bathroom, they had no answers. They then proceeded to say that she must be constipated and that was their diagnosis. Meredith had not eaten in over 5 days, yet she was supposed to be constipated. By the end of the week we were so tired. Tired of pushing, and fighting with the doctors. We told them if they couldn't do anything further to send us to Levine's back home.  One resident told Creig that Meredith was probably doing this to herself. Unfortunate for that resident, my sister heard the whole conversation. Tiffany, yet again showed just how persistent she can be. We had a meeting in the hospital room with the doctor, residents, and family. Tiffany didn't hold back and she let the doctor's know not only how much Meredith had suffered and struggled, but also that their comments were completely unprofessional and unacceptable. I can't even begin to say how proud I was of my sister in that moment. She was so mad that she was crying, but she fought for her niece, when I no longer had the energy to do so. She said everything that I was thinking, but couldn't and because of this we not only received an apology, but the doctor and residents went back to the drawing board. We left after being there for 6 days with a diagnosis of abdominal migraines.

Over the last 3 years Meredith has consistently struggled with abdominal pain. At times, it is minimal, but others she is in such severe pain that she is not able to function. Three months ago, she began having severe symptoms again. She has also had bloodwork in Chapel Hill and the results were abnormal. This prompted a visit with her gastroenterologist. She ordered additional blood work, an ultrasound, and multiple 24 hour urine tests. All results were normal. The ultrasound checked her gallbladder, kidneys, bladder, spleen, and liver. When I asked about additional tests that could be done to check her gallbladder, the doctor insisted that everything was normal. I had asked multiple times about her gallbladder. I was told that the ultrasound would have shown gallstones and it didn't. I was also told that gallbladder issues are extremely rare in children.

I found an article online about another family whose child had struggled for almost 10 years with the exact same symptoms as Meredith. When this child was in college a doctor finally performed a HIDA scan and found that she had a dysfunctional gallbladder. She had to have the gallbladder removed and she has been pain free since. I also knew that it took several years for doctors to determine that my father had a gallbladder issue, because his ultrasounds were also normal.

I persisted. I again suggested that even though Meredith does not have gallstones, she could still have a gallbladder issue. I was told again, that this was highly unlikely, but because I was persistent, a HIDA scan was ordered. When a HIDA scan is performed, they place an IV. They then put a tracer into the IV, which is supposed to go through the liver to the gallbladder. After one hour, they take an x-ray to confirm that the gallbladder is full. Then they put a special fluid through the IV that drips for one hour.  This fluid is supposed to cause the gallbladder to contract and empty. A second x-ray is then completed. Meredith's gallbladder filled perfectly, but upon the second x-ray it was noticed that the gallbladder was still very full. After leaving the hospital, I received a call from the gastroenterologist. Meredith's results showed that her gallbladder only functions at 6%.  6 percent! I was then told that Meredith was being referred to a Pediatric Surgeon.

We saw the surgeon yesterday. He is fantastic! He entered the room and first introduced himself to Meredith. He shook her hand, asked her questions, and then told her that she would need to have her gallbladder removed. He explained how it would be removed and told her that she would have to stay at the hospital overnight. He then asked her when she would like to have it removed. She replied with, "Well, if you wanted to take it now you could, but I'd really like to wait until after Thanksgiving." That worked out for her because, they didn't have anything available until December. She will be having surgery on December 7th.

Meredith's pediatrician told me that she was so glad I was persistent. The surgeon also said that it is very rare to see gallbladder issues in children. He said most doctors would not order a HIDA scan for a child and that because I was persistent, we were able to find out what was causing all of this. He said he feels certain that after having the gallbladder removed Meredith will greatly improve. On top of that, we have also been told that it is highly likely that Meredith will not have to continue the gluten free diet and her specialist in Chapel Hill also believes that this could help improve her atopic dermatitis. Stress and pain can cause flares with atopic dermatitis. Meredith has certainly been in a lot of pain over the last 3 years, which has also increased her stress level and even anxiety. We pray that this surgery will be the answer to many, many prayers.

When we received this diagnosis, I was angry. Angry that Meredith has been through so much over the last three years, and most of it wasn't necessary. Angry because if the HIDA scan had been done long ago, we may have had this diagnosis much sooner and she wouldn't have suffered for so long. I have also felt guilty. I have spent a lot of time over the last few days wondering if I had just known then what I know now and if I had just persisted even more, maybe the doctors could have found this before now. Maybe Meredith wouldn't have had to experience all of the procedures and tests she has had to endure over the last three years.

My prayer life is pretty strong, but God has definitely heard from me much more over the last few days. I wanted to ask God why. I wanted to ask him to help me understand why Meredith had to go through all of this, but I didn't. I know he has a plan. He knows everything and he is in control. I am thankful that through all of this, we have become even closer as a family. We have received so much support and encouragement from our church, friends, and people that we don't even know. I am thankful for my mother-in-law and her willingness to be with Meredith everyday as her learning coach, so that Meredith can attend school everyday from home and for her constant support. I am thankful for my mom and dad, for the many times that they have dropped everything to help us, for their listening ears, unconditional support, and for always being there. I am thankful for my sister Tiffany, for her love for Meredith, her support, and her persistent nature.

We are grateful and we are blessed!