I went into the hopstial on Feb. 11th with a really bad spell. After 30 days I was determined to get out of there, so they discharged me. Well, I wasn't well enough to go home, and we all knew it, I just wanted to give it a try. 4 days after discharge I was back in the hopsital. This time for just a week and a half. During these hospitalizations not only what I dealing with killer stomach stuff I ended up with a killer migraine that wouldn't go away. When I got out the second time I saw my neurologist and he did a nerve block on both sides of my neck. I also saw my GI doc and surgeon. The GI doc isn't good for anything other then a pain in the butt. We had decided it was time for us to change from the Children's hospital to the adult hopsital. My mom took off that day and went with me to the GI appoint so everything got discussed and to make sure I didn't have any misunderstanding. The GI doc agreed that she would take care of my next time I had to go in. She just wanted to make sure my adolescent doctor was okay with the switch. She thought it would be a good idea for me to get a port, because during my last two hospitlaizations I was stuck here there and everywhere, even places you would never imagine. I saw my surgeon right after that appointment and he is in complete agreement that I needed a port, but he want help from Vascular to do it because of my blood clots and scar tissue. He got me an appointment with the vascular surgeon of his choice for me to see the next week. The day after seeing the GI and the surgeon I saw my adolescent doctor and it was hard to transition (he and my surgeon are the only doctors I've had since the beginning of all of this, and he has never had a patient as long as me), but he agreed that it was time for me to switch since all my other doctors were adult doctors. The next week I see the Vascular surgeon, she does some scans and feels comfertable putting a port in on my right side. So the next Tuesday he does the surgeroy. I was already gettin worse again by this time. I made it till Friday, then came in to have my pacer adjusted and was doing so bad ended up back in the hopsital. I've been in 3 weeks today. My GI doc said she wouldn't admitt me, after her promising she would. My surgeon was out with a stomach virus, so I ended up on the internal medicine team, which has been okay. They keep trying to change my meds. though and it is making things worse. My surgeon was just in and is going to call them and tell them they have to change some things back. When he gets done with his next surgeory he is going to come back by and adjust my pacer. Last week he adjusted it and about 3 days later he went to adjust it again and it had undone the last adjustment he had done. Not sure what's up with that. Not being in the children's hopsital has been very different. I don't know the nurses which makes it hard. I have gotten a couple that I like. The day after I came in I was so weak that while in the bathroom I feel and hit my head on the door frame, the bottom of the iv pole, and the concreat floor. I also hit my neck in a few places and banged up my leg. I ended up having to have a x-rays an a ct-scan. Thankfully, thing were okay, it was just a welcoming to the old people floor I guess. I'm just so tired of this and ready to feel better.
Sorry about all the complaining. I helps to vent sometimes.
Love and hugs to you all,
Char
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