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In the Hospital with Fever, Head Pain and Eye Pain
By Margot | November 15, 2009
Sam’s headaches got progressively worse. Wednesday night he woke up crying in pain and holding his head. He went back to sleep with some tylenol and then Thursday we were in the clinic trying to find the cause of the headaches. His eyes hurt and were very sensitive to the light. We thought it might be a really bad case of sinusitis since there were no other symptoms. We also thought it might be disease progression since there were no other symptoms. We did a head CT in the clinic and it was perfectly clear. Sam wanted to go home and take a bath which seemed to be the only thing that helped with his head pain, leading me to believe it might be sinus pressure. We went home on pain meds and Lisa, our nurse who is a pro said to me as we were leaving if his neck hurts or he gets a fever, you bring him right back in. With the sensitivity to the light, it might be meningitis. I was wondering why she kept asking him if his neck hurt all day.  Anyway, he got home and threw up and then spiked a fever of 101.2 (not the super high usually associated with meningitis)  about 8pm. Neil brought him in to the emergency room. They didn’t want to do a direct admit because they thought the ER would be able to diagnose meningits much more quickly. He was feeling much better on the way to the hospital but threw up all over everything in the car so Bill and Vickie watched the Andy and Charlie (asleep) while I brought in more pajamas and clothes and sat in the ER room with Neil and a sleeping Sam.  They got Sam into a room right away. The ER was a pit of flu and swine flu and people thinking they had it. He had slept most of the day by the way.   I spent the night last there and he was feeling a little better but he was wearing Neil’s sunglasses all day even in the dark room and we didn’t turn on the lights all day. His eyes are really bothering him with any sort of light. He looks like Ray Charles. The doctors wanted to do a lumbar puncture to rule out meningitis but we don’t want to do a lumbar puncture because there are several papers showing that can spread NB to the brain and Dr. Modak recommended that we think twice about it. So we have been treating with Mirapenum for the past three days which will cover him if it’s bacterial. If it’s viral, then he just has to ride it out. He doesn’t have the high fever that goes with it or the telltale rash or the stiff neck or back pain. We did an MRI yesterday and it looked perfect - no sign at all of meningitis but a clean MRI doesn’t totally rule it out. So, we don’t actually know what he has. The infectious diseases guy is doing a bunch of blood tests and threw out several other possibilities today.  Anyway, he’s doing much better in terms of headache but has lots of eye pain with any light. I’m a little worried he’s becoming a morphine addict and I had to laugh when he said in his Ray Charles glasses, “Heey, when can I get some more of that medicine?” This afternoon he was pretty weepy and sick of being in there. It’s hard on him to know that Andrew’s going to his soccer game. I tried to interest him tonight in taking some guitar or music lessons and he angrily told me he wants to play sports.  He perked up after I read to him some from “Sheila the Great.” We started it yesterday and finished it today and my voice is tired but it’s good entertainment in a dark room with only a book light. Hopefully tomorrow he’ll be on his way out the door.    We cancelled his and Neil’s flight to Philadelphia tomorrow and we will try to shoot for Monday and reschedule all of the Monday stuff.  His urine was getting worse again after two days of just lying around and good platelets so who knows what triggered that.   It looks a little less red this afternoon though.Â
I’ll post when he gets sprung.
Margot
Topics: Progress Reports | 11 Comments »
November 15th, 2009 at 5:51 am
Margot,
Can I do anything for any of you? If you need ANYTHING, please do not hesitate to call. In the meantime, I will say a prayer that tomorrow is a better day.
Mallary
November 15th, 2009 at 2:43 pm
Sending many prayers and good thoughts your way. I hope today is a better day.
November 15th, 2009 at 4:00 pm
Poor, sweet Sam is having such a hard time. He is in my prayers, always. Such a brave boy, I pray he gets a break soon and leaves this nasty bad patch behind.
November 15th, 2009 at 6:05 pm
praying for that sweet boy…. sucks….hope you get it figured out and he gets sprung soon…..
lots oh love and prayers
rhonda dudley
November 15th, 2009 at 6:37 pm
Sending lots of good thoughts your way and praying for more soccer filled days.
November 15th, 2009 at 8:01 pm
Dang! Wish he could catch a break. Thank God for all those clear scans.
Good luck with the Monday Flight!
Lara
November 15th, 2009 at 9:33 pm
Oh good grief, this is not the update we wanted to read and certainly not the one you want to post. We are always thinking of you and sending VERY good thoughts your way. Still inpatient in NYC but hope that you are out in CA and feeling better. Lots of prayers and well-wishes coming your way for good scans this week.
With love, with friendship, with hope,
Sarah, John and Jack
November 16th, 2009 at 2:14 am
So not the news I was hoping to read…..we will do tons of praying and hoping here.
Luv
Abra
November 16th, 2009 at 2:21 am
Love Ray Charles. Love Sam. Don’t love Sam in pain and singin’ the blues. Sending you all positive vibes for clearing this up and getting to Philadelphia asap. We’re around all week…
November 16th, 2009 at 2:45 am
Praying and sending lots of love to Sam! 😉
does he use an ipod? would listening to soft music
in a dark room help… if he has no headaches, maybe that will help distract him from the eye pain ? Or he can do books on audio tape?
Love and hugs,
Colleen
November 16th, 2009 at 8:22 pm
Wondering what will do the trick to make the time pass faster. How do audio books do? Or does Sam need to actually hear your voice doing the reading? We have a pretty large audio book library that we can share. Let me know.
This morning we made reservations for San Diego, arriving on January 7, departing on January 12. I hope I can somehow fit into your schedule on one of the intervening days.
Vickie