Another frustrating day with doctors for us. I went in thinking that we had the single diagnosis. We went to the GI (Gastroenterologist) today and discovered that she has a level 3/4 Bladder Reflux diagnosis as well. Apparently we had some miscommunication with the office staff and they assumed I knew that we had the VCUG info and that I was looking for the stomach film disgnosis, so I was mistaken in thinking that Jocelyn had no bladder problem after all. What is unknown at this time is if the Encopresis caused the reflux, or if the reflux was caused by the Encopresis. So now we have to schedule appointments with the Urologist as well. The level 3/4 Bladder Reflux is often a surgical correction.
To fix her colon, we have to give her Miralax 3 times a for the next week. Our objective is to make her poop everything out and it has to be the consistancy of pea soup. (There's a food I will NEVER eat again!) Then for the next 2 months at least and possibly extending to the next 2 YEARS, we will be controlling her bowels with Miralax. If this works, we can eventually put her on fiber 3 times a day, and go on with life. There is a 50% relapse rate in children, and they told us that realistically, she will have problems of some degree for the rest of her life.
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I was able to get in touch with the pediatric urology office yesterday. I talked to the nurse so that she could get some background info from me. What she said is that Jocelyn was born with this defect. The fancy name is Vesicoureteral Reflux and she has a level 3/4 reflux on the left side of her bladder. Coincidentally the colon is on the left side of the body, but it is unknown if the Encopresis (the bowel problem) is caused by the reflux or other events but the GI was mistaken when she said perhaps the Encopresis could cause the reflux. It is unusual for the reflux to be diagnosed at age 4, it is usually caught in utero or within the first year of life. Talking to her did trigger memories -- the fact that Jocelyn has had several unidentified infections with a high fever to which they said that it might be a bladder infection but they didn't know without the cathetor test. And they always said they would err on the side of caution and just give her an antibiotic (which cleared up the symptoms) and we never worried another second. Dr McLaws was the first person to mention that there could be a problem when I took Jocelyn for a third bladder infection in a 2 month span. Still we didn't get the sense of urgency, they attributed to dehydration and potty training. So we have an appointment set and they will decide if this a surgical fix or not. They will run Kidney and bladder ultrasound and possibly a Intravenous Pyelogram (injecting dye in the veins so they can see the urinary track more clearly on an x-ray). So I am sure you will get more info than you ever want. Fortunately, she is still young enough that her kidneys shouldn't be too damaged yet.
There is actually a medical reason that we haven't managed to get Jocelyn trained so hopefully once this is all fixed, we will have less stress and we can claim her as potty trained!!!!
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We know everything will be okay. "Be still and know that I am God," is the scripture that will get you through all of this. Some day we will understand how this fits into the plan and what was taught and learned by everyone involved. She is a special little girl and has been chosen for this hard test, but she is full of daring and bravery. She will do fine with this test and will be better for it. The rainbow always comes after the storm. So take this one day at a time and help her to feel successful in her efforts. Keep praising her and telling her she is okay and a good girl to cooperate with the doctors and that you will help her every step of the way. She is a smart little cookie, and children are pretty resilient. In a few months this will be behind you and you will be onto other trials that life brings you. It seems overwhelming right now, but this too shall pass and you will be amazed at your ability to have coped. What a good mom you are to persevere when things it tough. Your devotion to each child brings a whole plateful of love and honor and ultimate joy. Being a mom is not easy, but oh so worth it. Love, your mom
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