We still have not heard any official results from the Mayo Clinic regarding a diagnosis, but so much has happened this week as a result of “the packet” we received in the mail last Friday. I have sent that information on to several of her doctors, especially those we are seeing soon. I hope and pray that we have some definitive answers by Thursday, because we travel to Ann Arbor to see the metabolic/genetic specialist Dr. Donna Martin. We have had this appointment scheduled for six months, so it would be awesome to be able to chat with her about everything we don’t understand – and most importantly – to talk about TREATMENT!!! We also will be getting a second opinion on her laryngomalicia by an airway specialist (ENT) in Ann Arbor as well. Long drive on Wednesday. Long drive on Thursday. But I look forward to both of these appointments.
I spoke with Allison’s GI doc’s dietician on Monday, since her well-child exam last week proved her to be overweight. As I suspected, her caloric intake has been reduced – again. She started at 30 calorie/oz, then went down to 27, now she is on 22 calories/oz, which is two scoops of formula less than we were doing this time last week. That decreases the amount of cans we need, which reduces cost a little, so I guess all this is good news.
When I spoke with the dietician, I told her we were close to a diagnosis, and I passed along the name of the disorder that she might have (glutaric academia type 1). I asked if she could get this message to the GI doc, and she said she would. When she called me back later in the afternoon after calculating Allison’s dietary needs, she told me that the doctor was very interested in this information, and that they looked up the disorder together. They even looked into dietary needs – and they found that there is a formula that would be very appropriate for her. I, of course, said “let’s try it” and she told me the doctor didn’t want to make any switch until we come in for an appointment. Luckily that appointment is scheduled for a week from Monday (the 10th), so I suppose we could wait until then.
So, besides phone calls and PT and Mason’s flag football, the week was seeming normal – until Wednesday. I was about 20 minutes from packing it up at school and going to get Allison from daycare when I got a phone call. It was daycare. It was slightly frantic. Allison had pulled her tube out. To make a long story short, Allison’s GJ tube, which was replaced just 12 days ago, was not put in correctly. I had thought that the balloon (the portion inside her stomach which is filled with water to prevent it being moved out of place) was leaking, since it did not have any water in it. I filled it up with 6 cc’s of water and called the surgeon. Of course it was the afternoon, and the doctor was not around. The suggestion given to me by the surgeon’s nurse was to “tape it” into place. I was not thrilled at this answer to say the least. Thursday morning, when I called the nurse back, to tell her Allison had vomited orange, and that the balloon that I filled only 12 hours before was down to 4 cc’s, she said we would need to repeat the procedure and switch out the tube. Of course I was angry: another sedation, another IV, another hospital, another day off, another “what are we going to do with the other kids?” – but it worked out perfectly. They squeezed her in Friday afternoon. I had another teacher cover my class (thanks Malia!) and we were home by 6:00. I was not thrilled with my husband, who was suppose to be handling the rest of the crew (and he was still in Flint at 4:00), but he brought home pizza and totally redeemed himself.
I also got a call from Allison’s pediatrician Friday night. I had some questions for him after “the packet” arrived – mostly “what do we do now?” I wasn’t sure if some of the medications that were suggested could be prescribed by him, or would that be neurology’s area, or GI? So we talked about that. He called in a script for her (Carnitine, I believe), which I understood to be more of a dietary supplement – something her body needs that she is unable to produce on her own. Like always, my response was, “it is worth a try!” We also talked about narrowing down our number of specialists. We do not need to see five neurologists anymore. He had good advice about that. We concluded with the plan to repeat some labs requested by Mayo in two weeks, and to call Mayo on Tuesday, requesting anything new be sent to Dr. Martin before our appointment on Thursday.
Allison is doing well. Her new GJ button looks perfect – no leaking! Hopefully she is in a good enough mood this weekend to let me catch up on grading, planning for my upcoming absences next week, and cleaning up this house. I also have an appointment with my couch and TV for some football games today and tomorrow.
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