I never knew what kind of fight, determination and drive to get what I need, lived inside me until I see the pain in my child's eyes.
Annabelle isn't doing so hot. She isn't doing awful but she also isn't doing great. We have great days and we have crappy days. But mostly these come in waves of weeks. You see, when she is on liquid prednisone she is fine and we have great days. She is smiling (albeit crazy) but she is happy and eats great with no side effects. When she is off the prednisone she relapses, and fast. She returns to coughing, choking, wheezing, vomiting and overall miserable (I believe to be suffering from Roid-Rage). Each time we return to the doctors with the same issue, they add another medication on top of our current treatment. And were not getting any relief! Currently, we are in the phase of no prednisone and coughing, choking and wheezing. I took her to our GI Specialist two days ago and begged him for help and a change in her treatment plan. He agreed she was on entirely too many meds and said he would speak with the allergist and together they would determine a modified treatment plan.
Last night I get a call from his nurse: Keep all treatment plan the same, don't make any changes.
Me: What? That can't be right. He isn't remembering our discussion yesterday because he agreed she is on entirely too many meds!
Nurse: No. He agrees with Dr. George and the treatment and thinks that it will all work out.
Me: Work out? My child is a textbook with these meds. She will only get worse the longer she's off the prednisone. I guess I will just wait another couple days for her to get worse and well see you again in 3-5 when she's miserable.
Nurse: Well, Im sure she will be fine! Have a good night!
W.T.F. ?! UGHHH!!!!
I haven't been sleeping well lately. You know those nights when you lay in bed and cannot solve the puzzle spiraling around your brain? You just keep thinking of so many different ways to solve the issue and it just keeps manifesting into a long drawn out - still not solved - issue. You roll over frustrated and it's 4:30a. Toss and turn and fall asleep at 5:15am. Alarm clock goes off at 5:30am. :Exhale: Yea. Ive been having those days. I need to fix my baby. She's sick and she looks to momma to be able to help her and I can't. I don't mean to say that our doctors are WRONG but I do think that this warrants a second opinion. And after a couple sleepless nights that was the conclusion that I came to, to solve this pain in the ass issue. Getting a second opinion though? Not as easy as it seemed at 3:47 am on a Tuesday night.
VCU Doctor. Ive seen lots of news articles on her and she specializes in EoE. First available appt. June 15th. I took it.
Kluge Children's Hospital in Charlottesville. Old as dirt but specializes in EoE. They're waiting on the August calendar to get me on the books. I declined.
Inova Fairfax Hospital. Can't pronounce his first OR last name but he looks to know what he's talking about. Soonest availablity, sometime in July. Declined.
Pediatric Gastro Assoc. Another old doc but he came recommended from a fellow mom of EoE (actually two moms). I fear him bc both their kids were immediately placed on a feeding tube and we are avoiding that route. Soonest available appt. is June 10th and I accepted. If I drop off her medical records to the office, they may be able to get me in sooner.
Duke University Medical Center. They couldn't even talk to me without cringing at their August calendar. Nor did they have a specialist that focuses in Eosinophilic Disorders.
The King's Daughters Children's Hospital in Norfolk. I found a doctor that did his internship and began his career in pediatric gastroenterology at Cincinatti Hospital!! Cincinatti is one of the two hospitals that specialize in EoE, the other being the Children's Hospital of Penn (CHOP). His areas of focus are in Eosinophilic Esophagitis and GERD, both things Annabelle has! I feel like he is the golden ticket.
Soonest appointment available, July 1st. I took it without hesitiation and put on my hard hat and began to think around. I called my pediatrician and spoke with Dr. Young, I am so glad I got her on the phone and explained the situation. As soon as she heard Annabelle's diagnosis, she began pouring with sympathy as to how sorry she was that I was beginning this nightmare. She explained that a good friend of hers is living the same hell and is currently at The Children's Hospital of Philadelphia but still living a nightmare. Then she excused herself and began apologizing for not being very PC and tactful over the phone but wanted me to know that she understands what I am fighting against and wanted to do anything to help. I explained the situation and asked if she could pull any strings to get me in sooner, without hesitation she took the phone number I had and called the DOCTOR right away. They spoke for a bit and he asked that I send over Annabelle's medical records and he would get her in right away. Ta-Da! I feel like a woman on a mission and nothing will get past me. I never knew I would have to work so HARD to find answers and push for help for my daughter but I am. And I will continue to jump thru whatever hoops I need to do the best for my little girl. No matter what.
So now we are waiting for the hospital to call us about where to send medical records and when our appointment is rescheduled for. I cannot wait to take our trip down there, I pray we get good news, at least a different treatment plan. OR even if this doctor does agree with our current treatment plan, I would like to hear that. Because right now I have lost of questions and reservations as to what we are doing. I also pray she doesn't get worse too fast and we cannot see this new doctor before needing immediate help here in Richmond. Fingers crossed!
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