Being a mother is the most amazing part of my life but has also been one of the toughest. It's one of those things that, until you experience it, you can never fully understand that unconditional love for another life. Adam and I are so blessed with Garrison. He is the easiest baby (yes, I know he is 2, but he is still my baby!). He has been the light of our life for right at 2 years. Beginning in May, we started noticing symptoms with Garrison, that alarmed us. He had tummy problems, a deep chest cough, a constant runny clear nose, and occasionally would complain of back pain or stomach pain. As parents, you have to be the voice for your child when they can't as well as be attentive enough to notice they aren't 100% well. We took Garrison to our pediatrician many times with these symptoms only to be told that Garrison was extremely healthy and growing on track. After the symptoms continued to get worse, we finally pressed our pediatrician to be told that we needed to see a specialist. We took Garrison to a Gastrointestinal doctor, Dr. Annette Whitney. She went over all of his symptoms and agreed that further testing needed to be done. The first was just a series of blood work.
This was our first sad day as parents. Dr. Whitney is at Children's Medical Center and it's overwhelming all the "sick" kiddos down there. You don't realize how blessed you are with a "healthy" child until you are looking at other sick children, and it's overwhelming. I don't know how any parent deals with chemo or other life threatening procedures on your baby. They are suppose to be healthy and running around without a care in the world, and yet they deal with this stuff. I don't know how. We simply took Garrison for blood work, where I had to bear hug him so he couldn't move, and Adam had to hold his arm above and below the elbow straight. Of course, Garrison screamed and said we were hurting him. Horrible. Adam even commented that this was the worst day of his life. Seems minor when there are children doing other serious procedures but for us, in our small perfect bubble, life was not great at this moment. The results came back a week later and even the Dr. commented that the results were surprising to her. His platelets, white blood cell count, and ESR (sedimentation rate) were elevated. His ESR at a very high number. His number came in at 88, where normal for his age is 0-10. On the phone with the Dr., I lost it. I apologized and of course, she said there was no need to apologize, that she understood, and for me not to worry, that she would get to the bottom of this, and get him fixed. I guess it was reassurance for me that I knew my baby, I knew his little system wasn't 100%, even when everyone else around me seemed to think it was all normal and that he would outgrow it. Reassurace to a Pediatrician that kept calling my child "the healthy kid" and making me feel like a hypochondriac mom that WANTS something to be wrong with her child. Dr. Whitney said his ESR rate indicates a couple of things and she was leaning toward an auto-immune disease or some major inflamation somewhere in his body. We had to schedule an endoscopy and colonoscopy for the following week so she could figure out what was going on inside his little body. Yep, we seriously had to wait a week to figure out what was causing this. The entire time obssessing about all the horrible possiblities that could be determined.
Procedure Day. I can't even describe how horrible this day was for Adam and I. Earlier that morning, I had explained to Garrison what the Dr's were going to be doing, and that he would be asleep for a little while, and that he may feel some pain afterward, but it was all to get him better. I explained that we needed to hear what the Dr. has to say so that we can get him better. Of course, a two year old doesn't undesrtand, any of what i'm telling him but somehow I felt better explaining it to him rather than letting the Dr's sneak up on him. We took him to Cook's Children's Suregery Center and couldn't have had a better experience, all negative things considered. The staff was wonderful, the center was very clean, and it all turned out to be great. The anesthesiologist was wonderful with garrison. Adam and I were able to carry Garrison back to the OR and I set him on the table. I don't think he ever even realized they had put a mask on his sweet little face because he was too busy "blowing up balloons" on the anesthesiologist iphone. Cool app. Again, roller coaster of emotions, as we had to walk out of the OR room with our little guy asleep and being hooked up to machines, to go sit in a lonely room and await results. 20 minutes later the Dr. came out and talked to us and said everything went really well and that was she saw was very minor and fixable. She sent of some stuff for biopsies and said she would have the results in a week or so but that all things considered his GI tract looked really well and didn't indicated any of the bigger diseases we were scared to death of.
All of that to lead us to....EE...Eosinophillic Esophagitis. Garrison has a very mild case of it, thankfully, and it's still possible at this age for him to outgrow it. There is a lot I could explain, but in as few words as possible, he basically has multiple allergies that are causing his GI issues and then causing white blood cells to build up in his esophagus. Multiple severe allergies is what I have read, but I believe his are mild. He has been on a steroid ever since and on prevacid and within a couple weeks, we were already able to see a change in our little guy. We have had to make a couple diet modifications and with the medications, he seems to be "healing." The Dr. wants to continue the steroids for another month and then remove him from medications. She believes that we can monitor his symptoms clinically bc obviously I'll see teh symptoms return if he needs to stay on medication. Obviously, I don't want him on steroids forever, but if it makes him better then I guess I can't complain.
0 comments:
Post a Comment