Alex and Maddy

Alex and Maddy

Friday, May 11, 2012

Last Day of Appts and Home

This was definitely one of the easiest trips we have ever had to Houston! Everything went as planned. There were no surprises, no complications. Definitely a nice treat!

Wednesday we had three appointments. We saw Opthamology first. It was pretty simple and routine. Alex's eyes showed a slight decline in vision. She did not feel like we need to correct it, but expects Bug will need glasses in the next year or two.

After Opthamology we grabbed lunch with the Knights and then headed to Endocrinology. I knew this would be an important appointment because of the severe hypoglycemia Alex struggles with. I'll start with the good. Since being on TPN last September, Bug's growth is awesome. For the first time in over 5 years, he is on the growth chart for both height and weight. He is still scraping the bottom of the charts, but just being on them is a huge accomplishment for us! Then our talk turned to the hypoglycemia. Blood sugars below 40 are extrememly dangerous, even potentially fatal. In the last month, Alex's blood sugars have been below forty at least 12 times that we know of. We can not allow this to continue to happen. More importantly it would be horrible if his blood sugars dropped overnight when he could not let us know. By the time I woke up in the morning it could be too late. The fact of the matter is we count on man made machinery to keep him alive. Machines that are supposed to alarm if there is a problem, but don't always. Machine's that are supposed to stay connected, but come unhooked. You get the idea. As I mentioned several weeks ago, we are working on a service dog,  but that is at least a year away. So we needed another safety net. Our plan is to get Alex on a Continuous Glucose Monitor. It is a small needle that will be inserted into his stomach once a week. A transmitter attaches to the top (about the size of a paper clip). He will then keep a "beeper" or receiver within 5 feet of him. The monitor will check his blood sugar every 5 min and if his blood sugars drop below 55 it will alarm and let us know he is too low. Hopefully the CGM will give us some piece of mind overnight.

Our last appt was hematology. Our normal hematologist was out so we saw her partner. We have seen her frequently in the hospital so she is very familiar with us. Our main conversation was about Alex's upcoming heart cath. There is a risk of bleeding as well as a need to anti-coagulate if they close the ASD. This becomes tricky because of Alex's history of clotting issues. We came up with a plan so hopefully all will go well.

Yesterday, we said our goodbyes to the Knight's who are family to us. We made plans for our next trip and got on the road. It always feels good to be home, but we miss all our friends when we leave.

Ali

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