Wednesday, January 27, 2010

Mayo the 3rd time

Most of our family and friends already know a lot about this trip, because of our facebook page, emails and multi-texts. If you are new to this site, and want more info. feel free to contact us, and we are more than willing to share our experience with you. Since Xander's surgery is less than 2 weeks away, you will have to excuse this post because for the most part I am going to stick to the facts.

Monday, Dec. 16th to Friday, Dec 20st we had our week of monitoring. X was given an EEG cap and was monitored 24 hours a day, this included audio and visual recordings as well. We were actually warned by the nurses several times not to do anything we didn't want the world to see. I must have given the nurse a confusing look, because she explained that everything in the room was being monitored and they have had numerous teenage boys disregarding the warning. I laughed out loud at that, my innocent wife gasped.

The monitoring continued until Thurs., as well as blood draws, medicine changing (with doses), and vital checking. Wednesday came and X started getting really annoyed about things, rightfully so. He had been taken into different rooms for more testing, put under twice, and confined to a bed. Now I was confined to a hospital bed for two days due to a staph infection, and had to stay in the room for 3 days, I went nuts. A 5 year old, with about 168% more energy than me, only allowed to leave for more cruddy test, that was awful for all involved. We tried to keep him entertained by making everything into a game, but he soon became hip to what was going on.

It was during this time that I confronted a 3rd year resident about his medicine, and what was happening. Of all the doctors (and medical personnel in general) we had contact with; she was the only one who we had a problem with. She was smart, but her bedside was not at the level we had come to appreciate. Sarah and I do not think she will make it there as a doctor, she is not of the same mold as the doctors we had, even nurses talked about it. Anyway, after I confronted her, she avoided me like the plague. I ended up trying to talk out our differences; it didn't feel like she got it.

Thursday was the best for X, he was allowed to take off his wrapping, and they removed his EEG electrodes. They do it with an acetone mix, so the smell is horrific, and since X has super sensitive skin, and they were rubbing so hard, he had a bunch of scabs a few hours later. Later on that night there was a Christmas party where X won a huge TAZ stuffed animal (He named it I.V.). Santa came too, called X up as the first to receive his gift; unfortunately X had a seizure and fell right on his head. We had to go back to the room and be checked over; X was bummed he didn't get to talk to Santa. About an hour later X heard a knock and a "Ho, Ho, Ho", Santa had made a special trip to talk to X and take a picture. All I could do was thank everyone for being so thoughtful, and take a picture; X was ear to ear smiles.

We were able to go home that next night after a long discussion with two neurologists. The ride home was fun, minus X starting to complain of abdominal pain. We would later talk about this and realize he was pooping a minimal amount, this would cost us two ER visits, and much frustration.

This post is not as detailed as it could be, and if you want more info. on the week of testing let me know. We just have a lot to do before we leave this next week, and I really am not in the mood to go into all the details today.

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