It's me. I am back in the ER tonight. I had a 90 minutes long seizure this evening that we couldn't break with my normal rescue medications at home. We had to do the 911 call, and go in with ambulance once again. I am going to stay on the 9th floor tonight. With my long seizure, and me getting over pneumonia and pseudomonas, no one dare to send me home tonight. The good news is that my chest x-ray does look better. I think no one knows if I have caught something else or if this seizure just flared up out of nowhere. Everyone is hoping for the last option...
We're pretty beaten up all of us. I don't seem to catch a break right now before the next illness or seizure comes my way. My family and nurses have worked so hard on keeping me healthy, and this last round of IV antibiotics was not a little undertake (last dose tomorrow!). We have had a big or little hurdle each and every day, and it is just not the best set up for home antibiotics. Lots or risks involved in keeping everything sterile and safe the way we had to give it at home this time. I have tried to be on my best behavior, but I know it was tough on all of us.
I usually get a break in the summer, but not this year. It is my favorite season. I usually get out much more, and I do love going to the pool. I haven't even been close to going this year. If I am not in the hospital, I am recovering at home.
That was why last night was important to me, to my family, and to my nurses. My mom had gotten suite level tickets for the Rockies game as a thank you for all her volunteer work she does at the hospital. We would have the whole suite to ourselves! That was a condition for me to come along. Sitting in the crowd at Coors field would probably not be my thing, but to have our own space to ourselves would be something different!
We packed up two cars to go, and extra supplies for anything that could possibly go wrong, so we wouldn't have to turn around if we would need something extra or different that night.
We had not planned on running into the issue of the handicap parking lot being completely full when we arrived!!! So, as I stayed with mom and Sarah, daddy had to find parking for two cars...As we were waiting for daddy to come back, we started talking to a woman who works at Coors field, since we had no idea how we quickly and easily could get to the suite level and avoiding all the crowds! They expected a full house for the evening!
The woman works at Children's as a nurse in surgery during the day! Bingo! When she realized that we had the Children's suite, and that she knew all 4 surgeons who have worked on me over the years, she decided to take us through the crowds to the suite level herself! Oh boy did that help! We quickly could take the backdoors and get up safely to the suite.
My nurses greeted me when we came to the suite! They were so happy I made it! I first stayed in the suite for a while, since I was pretty exhausted from all the travel, but after a while I made it out and was sitting with my family watching the game.
Everyone enjoyed themselves, and had a great time! Lots of good food and snacks! I had lots of attention, and loved that we all could have a good time together. I also got to visit with Dinger! We got some good pics with him - check it out!
I have to ask you all to send positive energy and thoughts my way this time because I am pretty beaten up from being sick since early May now. We all know that I have to break this pattern or I get a little bit sicker each time. Tomorrow I am getting off 2 big gun antibiotics...all of us a bit nervous how I will do after this 14 days course.
Keep me in your thoughts and prayers that I can stay healthy, and that I will send the next update from home.
Much love,
Jacob.
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