So, I last posted about how Ben had some wonky labs and the doctor was all "we need him in the ER RIGHT NOW! He could be possibly dehydrated!" Well, we had some labs done that evening and saw his pediatrician. The pediatrician checked him out and said he looked great. He was playing with the cords to the blinds and laughing and smiling at the doctor. So, after Joe got home, the on call cardiology fellow called and said, "well, he had a much better lab, but his potassium is still quite elevated, so the dr still wants him to come in because he might be dehydrated." Well, after a 10 minute conversation where the dr said he understood our side, but the cardiologist wanted him in, and us saying he was NOT dehydrated, he looked great! The fellow was finally willing to let us get a repeat lab at 7 am. It was so beyond frustrating because we know the dr who was giving these orders. She panics about EVERYTHING! She is always so quick to tell us he needs to be admitted for something or other and it turns out to be minor.
So, 7 am, Friday morning (Sept 7), Joe took Ben to Central Dupage Hospital (CDH) for repeat labs. I got there about 7:30 with the girls. Then Joe went to work. I brought Ben and Klara with me to drop Abby off at kindergarten. She loves kindergarten so much. We were supposed to go get donuts because they did such a great job getting ready that morning, but due to rain, construction and na accident, we were running behind. So, I promised them we could get one after school. Both girls were ok with that. We like to give them some sort of treat when they have to go with to labs. Especially when they are so good while they are there.
Later, that afternoon, Joe told me that they had called and said his labs looked great. That he did not look dehydrated on his labs at all. They had not gotten his Prograf level in, but were going to keep his prograf level the same until that came in. His prograf had been elevated on the previous labs. The bad thing about his prograf being too high is, it can cause problems with his kidneys. But, too low and it can lead to rejection. They want him between a 10-12 right now. As he gets farther and farther post transplant, they lower his target range more and more. Well, today, (Monday, Sept 10) they called with his prograf level. It was only 7.6. So, too low now. But, since we have a cardiology appt on Wednesday, they are keeping his meds where they are for now. They want to see if it comes back up.
The thing is, Ben has been sick with this stomach bug for 3 weeks now. So, since he is sick, it does crazy things to his body, which in turn affects his labs. For instance, right now, he is sitting on Joe's lap playing with my iPhone. But, an hour ago he threw up again and has had a couple of diarrhea diapers today. Yesterday, he was completely fine. So, it kind of just depends on the day you do his labs. If he is having any GI symptoms, it can mess with his labs.
All of this chaos and having so many medical appointments and him being sick is just one of the many reasons that we avoid anyone who is even slightly sick. And also why I sanitize everything that Ben might touch. If you see a crazy lady and a baby at the park and the crazy lady is sanitizing the swing and slide, that would be me :) I try to keep as many germs away as possible. But, somehow, Ben still caught a GI bug of some sort. We are not positive if he is still sick from the stomach bug or if it might be teething. But either way, he has been having these GI symptoms for over 3 weeks now. We are just hoping that he will get better very soon. But, of course, he does have 2 sisters. We never know what kind of germs they may bring home. And Abby and Klara love him so much, they are always kissing and hugging him and playing with him. Just today, He was laying on the floor and Abby was holding his hands to try to help him sit up. She is so sweet with him. Klara is too. She was shaking toys at him when he was crying. And right now he is sitting on Joe's lap trying to block Joe from watching tv. Any one of us could be carrying germs. It's just a fact of life. We have to be as careful as we can, but at the same time, Amazon is not yet selling bubbles that we can put him in, so we know he will get sick. We love how much fun he is being and love seeing him so playful and funny. He has gotten to such a fun age. Hopefully we can make it through a few more months without getting sick at all.
It is also harder on the girls when he is sick, not only because it takes more attention away from them. But, also because we can't do as many fun things like going to the park or a play place because, well, I don't want to be cleaning vomit off of a swing. And, I don't want him to get worse from some other germs. They tend to take it in stride, but I do feel badly for Abby and Klara when it happens. I also feel bad when he is admitted, not only because of the fact that he is sick, but also because it means I am away from the girls. So, like I said, I hope that we can stay germ free for a lot longer.
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