We now had a plan for Charlie. Her 18 month check up was in the next few days and we were able to update Dr. M on what happened at Children's Hospital. Besides these issues everything else looked good. She got her shots and we were on our way. He told us that she may possibly have a fever in the next few days as a result of the vaccines, etc. but nothing to worry about. The following week we were headed to Georgia to visit Judson's family. Two days before leaving she developed a decent fever. She seemed as though she wasn't feeling 100% but there were no real symptoms. We chalked it up to the shots and were not entirely concerned. The fever broke and she appeared fine. We had a playdate before we left and I saved packing until the last possible second. With laundry and kids being awake I just never got to it. If you know me, you know this is so unlike me! I woke up the morning of our flight and went in to get her up. I was limited on time, Judson was at work, I still needed to pack for the kids, do dishes, laundry, take care of all the stuff for the dogs, etc. I walked in her room to find her covered in the craziest rash you have ever seen. Would they even let me fly with her? I called the doctor's office to see what we should do. They paged him and we waited. I finally called back and they said that we could be seen in a half hour. Funny, because we live in the valley and the office is in Santa Monica. It was 9:00 and I needed to get two kids who were in PJs out the door, in the car and to Santa Monica in morning rush hour on the 405 in 30 minutes. If I didn't make it I would have to wait over an hour for his next opening and risk not making it back here in enough time to meet Judson to make it to the airport for our flight. I think the traffic Gods were with me that morning. I bribed Levi, got the kids in the car and made it. My mom happened to be in Santa Monica and she met me in the parking lot and helped me unload the kids. We ran in and made it just in time.
He tested her for all kinds of things and then looked at her chart and did the math. She was having a rare reaction to the MMR shot. The shot was a measles like rash. Nothing contagious or harmful just uncomfortable for her. Because her immune system is a bit more compromised from the gastroparesis she was more prone to this. We ran home, I threw clothes in suitcases and we took off. We made it to the airport and then became THAT family on the plane. Charlie was out of control, screaming the entire flight. It was our own personal hell!
She was out of sorts for several days, not eating, drinking, etc. When the rash was finally gone the gastroparesis symptoms where there in full force. One thing we have found is that they really come in waves. This was a particularly bad stretch for her. We had a hard time managing everything while on vacation. Judson's sister who is in college was our superhero. She dealt with more than any 21 year old should. In the matter of 24 hours she was thrown up on and pooped on and she took it like a champ. Super Aunt for sure!!!
By the time we had made it back to LA Charlie had a pretty difficulty month and it was time to see the doctor again. She had lost a half pound over the course of the month. Not good by any means, actually rather concerning to us AND the doctor. The miralax was difficult to manage and we were not getting the desired results. At this point we were going backwards. The eating was awful, weight gain was negative and colon function was clearly very poor. The doctor was going to be ordering some new tests to look in to this. One of which we had done before (twice before), the Gastric Emptying Scan. She wants to see what the change is once we have her on the right dose of the Miralax and the second will require a hospital stay. It is a more invasive test that will take a larger more in depth look at what is going on inside (more to come on that.)
We left that appointment (in the beginning of August) feeling like we are now back to amping things up again. Our quiet and calm times were over, back to frequent appointments and visits, tests, and now a hospital stay in the near future.
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