He changes so quickly!

Hi everyone,
The day before yesterday was awesome. The team let him put on a portable cardiac monitor and we got to go outside with his nurse that day. We also went to the atrium (children's play aea). This part of the hospital is incredible. It is set up with a lot of different play areas including a sand table, a pretend house, a pretend doctor's office, a music station, blocks, you name it. He really enjoyed the pretend the house with plastic food. He made me all kinds of imaginary meals. We ate the meals together and played with the baby doll. We washed the dishes and then took the baby to the doctor after our chores were finished. The doctor's office gave me the perfect opportunity to get him ready for what he had to go through yesterday.

Yesterday required a lot of prayer, patience and snuggles. Kaden endured 5 hours of intermittent nuclear medicine studies to show us how slow his stomach is emptying. The test also showed whether or not material was ending up in his lungs. When we were finished he played in the atrium again for a little while. We returned to his room and met with GI. They placed a ph probe through his nose and down his throat to rule out any reflux which will tell us if his Nissen  (the wrap around his stomach) is still working. As the evening went on, Kaden became more and more lethargic. His heart rate was anywhere from 136-152 which is really high for him. His respirations (how fast he breaths) were in the upper 40's....also very high for him. He had several episodes of color change, irregular heart rate, and retching. Our biggest concern was that as the night went on, Kaden's pupils were two different sizes and he could not sit up much less walk. He needed us to completely support his body weight. He couldn't urinate or even hold up his own head. The docs and nurses aren't sure what was happening. It could have been medication related, low blood sugar, dehydration, or....a dysautonomia episode. Well, we will see what happens today. He was taken off of his treatment  medicine, Mestinon and weaned from oxygen. There is still a lot to be discussed today. I will try to keep everybody posted. Please pray today goes well. He went from acting like he was showing major improvement and as of this morning his blood pressure is soooo high. She just checked it and it was 147/96. It's so hard to celebrate the good when all you fear is what's coming next ie; episodes like last night and this morning.  We shall see what the doctors say. They will be rounding in the next hour or two and I will blog again with pictures from today.