This week has had some highs and some lows.
I'll start with the highs...This week was Vacation Bible School week. I have been a part of VBS since I was a little girl. First attending, then as a youth volunteer and now at KUMC since Alex was 3. Last year was so sad to not be able to participate in this annual tradition. There is something so amazing about seeing hundreds of kids enjoying themselves and worshiping together. Maddy had a blast attending with some of her best friends. We made a compromise and she wore a mask whenever we were in larger groups and then I allowed her to take it off when she was just with our small group. She was so sad on Thursday when it was over! This week again reminded me why I love our church and church family so much!
The lows are medical in nature. First, is Alex's temporary line. It is placed in his arm. If he bends his arm in any way his pump thinks it is occluded and beeps. Translated this means that Alex and I have gotten very little to no sleep over the past two weeks. Multiple times a night I have to go into his room and readjust his arm in order to stop the beeping pump. I am EXHAUSTED! We have an appointment with surgery on Tuesday. We are praying that we can schedule surgery for a new port quickly.
Both kids saw Cardiology this week. We had a scare with Alex, but it wound up being a fluke. (His first echo showed major changes since last year pointing to Cardiomyopathy) Thank goodness. Both kids hearts looked good. They wore Holter monitors for 24 hours and we will get those results in about a week. Some of you may know that Maddy has been struggling since about November of last year with feeling really bad after every time she exercises (ie: Horseback riding). She gets extremely pale, fatigued and nauseous and is complaining of headaches. We have ruled out a few diagnoses over this time, but haven't really found anything to help. One of the reasons we saw cardiology this week (before our normal yearly checkup) was to discuss whether this could be a form of Dysautonomia. Your autonomic Nervous system controls all the things you don't think about like blood pressure, heart rate, body temperature and many other things. Dr. H feels like this is the likely cause and is much more prevalent in people with hypermobility in their joints. Before starting a medication we need to see if we can make headway by getting more fluids in her. (People with dysautonomia need a lot more fluids than a normal person in general). Unfortunately, this means after 4 years of using Maddy's tube only at night she will need to be hooked up several times during the day to get more fluids in. She has a good attitude and just hopes this helps her stop feeling bad after riding!
Please pray for Alex's surgery, for Maddy to tolerate the extra fluids and for them to help and for me to get some much needed rest!
Ali
