August 29th
Hello Everyone,
The last 36 hours or so have been fairly eventful. They moved Jackson out of the PICU Friday night at about 10:30. We were in a regular room on the med surg floor called 6 Long. We were there until about 3pm yesterday. Then they moved us up to 7 Long, which is where Jackson has stayed for the majority of all his hospital stays because in is the hem onc floor. We had a nice quiet private room. At about 6:30pm yesterday, Jackson had been feeling better. He was talking, joking, watching TV, and he wanted me to order him spaghetti. He was quite and all of a sudden he let out these three strange yelps. We looked at him and asked him if he was ok and his head was going left and then he was silent. We tried to get him to respond to us and he wouldn't. I ran down the hall to the nurses station. Everyone came in, evaluated him, vitals, etc. He was having a seizure. This is the same thing that happened early Thursday morning after he had a medication called Compazine. They thought Thursday that he had a dystonic reaction to the med. Hindsight is 20/20, he had had a seizure and I think it was coincidental that he had had the med 20 minutes earlier. So, they sent him from 7 Long to the PICU for close monitoring. We have an isolation room now because they don't know what he has. They don't seem to think encephalitis, bacterial or viral. Neurologists are saying migraines and seizures, maybe brought on by a virus in his body. They don't know.
August 30th
We are now back in a regular room and out of the PICU. We still have no answers. Infectious disease doctors are stepping aside now because they do not believe that any of Jackson's issues are brain infections. He is in alot of pain. His headaches have worsened since yesterday morning. Tylenol and ibuprofen no longer help much. He is on morphine and the neurology team wants to try naproxen. They say is is more effective than Tylenol and ibuprofen, it lasts longer, and it penetrates the blood-brain barrier better. He will start with that tonight. For now, morphine helps, but it doesn't last long. They are still speaking with the neurosurgery team about his shunt but they don't want to tap into it for the risk of infection and they say it is very unlikely that it is infected since he hasn't had a fever in the last 36 to 48 hours. Needless to say, we are very frustrated. Jackson's pain isn't getting better and I am wondering if pressure is building slowly in his head and the scans he had were just to early to see it. Jackson began complaining of his head hurting and back hurting nearly two weeks before his tumor was diagnosed. Although it is not a tumor now, it could still be pressure building from fluid build up. We want to fix his problem, no matter what it may be, get him feeling better and go home!
Jenise
Sunday, August 29, 2010
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thought's and prayers!!! I pray they know soon what is going on and that Jack get's well very soon! Love, Auty
ReplyDeleteOh Jenise,
ReplyDeleteI'm so sorry to hear the latest news. Poor Jackson. I hope that the doctors will find a way to provide him with the relief that he deserves. I hate that you are all going through this. Please remember that I am here for you if you need anything. SF is only 2 hours away, so feel free to utilize my help anytime. I will continue to pray for Jackson's complete healing.
Take care,
Monica