April 20, 2012

Much better!

Finally a less-fevery, puke-free night and more importantly Ben is smiling this morning. :)

April 19, 2012

Skyped to sleep

This mean old bug didn't let up all night. All the ibuprofen and acetaminophen in the world wouldn't get the fever below 102F. He was moaning and talking in his sleep all night and asking the most interesting questions like, "Why aren't there any kings on planet Oyf?"* Then the real fun hit in the morning when at about 6am Ben started begging for water, guzzled down several cups, and finally barfed it all over the bed. Got him in to see the pediatrician who chatted with him about Team Oomi Zoomi, listened to his lungs which are clear, and did a strep test which was negative. So it's likely a virus and all we can do is try to keep him hydrated. Dr. Roig said she would be on call tonight and tomorrow and would update the doctor on call at the practice this weekend and to call if he gets dehydrated or if the fever hasn't gone down by Saturday. Or pediatrician office is SO nice. They've been there from day 1 (well, technically week 3 once he was discharged from NICU) and everyone there knows our little boy - admins, nurses, doctors, everyone. They cheer for him - like literally cheer. And they are bummed when he's not doing well. Nurse Pract Pat paid us a special visit just to check on her buddy - Ben loves her. She knelt down beside him him, put her hand on his tummy, and asked him what was going on and he said, "Well, Nurse Pat, I boyft."*

Poor little guy. He's just so solemn. The only thing he has really requested is "Can I Skype with Namma Linda?" He got to Skype with granddad today which was a special treat and fell asleep skyping Grandma Linda this afternoon. So, anybody who wants to cheer a little guy up - rebecca.batey.fradin

* Ben doesn't quite have his R yet so they are usually oy...as in Oyf (Earth) and boyft (barfed). ;)

8:00 am

April 18, 2012

Another fun night

If we thought 103 was fun last night, well tonight is going to be even more fun! Harharhar. Ben has a little cough, but a nasty fever. Here's hoping this is the breaking point...

April 13, 2012

Chronic Pain

Well, this post title pretty much sums it up - chronic pain. That's what the neurosurgeon and neurologist have concluded is going on with Ben.

For about a year now Ben has been complaining off and on about his legs hurting. We haven't made a big deal out of it, have noted it (I often send myself little emails to keep track of things like this), and have moved on with life. The complaints have gotten more frequent and more concerning as it seems to have gotten more severe and has started to involve other areas. It was one thing when he would pipe up with "my legs hurt" or "I'm too tired" when asked to pick up toys. It was easy enough to believe it was a cop out. It was one thing when he would randomly bring it up as a topic of conversation, "Why do my legs hurt all the time?" Growing pains was our best guess. It was a whole different thing when he fizzled out at the beach and his little sisters kept on playing. It was a whole different thing during his preschool field trip to the fire station when he suddenly became somber and quietly told me "Mama, my legs hurt too much. Can I sit down?" And it was a whole different thing when he really seemed concerned himself. It bugged him enough that he readily agreed to see the doctor about it.

He was adorable with the neurosurgeon. He told him very clearly that his legs hurt "all the time" and pointed to where they hurt (all over) and said it's not just his knees or shins and not at night when he's in bed. He then proceeded to make Dr. Frim a pizza from his lunchables kit and then charged him a quarter for it.

Luckily (?) he had a full brain and spine MRI done just a few months ago so we have recent imaging to rely on. The neurosurgeon reviewed it back then and said there were no new issues. And he reviewed it again during our appointment and pointed out how clean and infiltrate-free the end of his spinal cord is and how much movement it had in both the prone and supine positions. So, it's highly unlikely his spinal cord has retethered - it's a common complication after tethered cord surgery. However, he has syringomyelia - a cyst inside his spinal cord - and, according to his neurosurgeon, it's the kind associated with chronic pain.

Chronic pain.

Ugh! It hurts to just type that. This is a hard one to wrap our heads around. I volley between shrugging my shoulders and saying, "Well, that's life!" and balling my fists and pulling my hair and saying through gritted teeth, "That's life."

There are medications he can take for the pain, but unfortunately the ones with the fewest side effects aren't good for kids with compromised kidney function. The next line of meds are anti-seizure medications and at this point we feel the side effects of those are worse than the pain. But it's good to know they are out there if this pain gets worse or interferes with his life more.

He is still a fabulous, smart, hilarious, energetic, athletic, charming and loving little boy. He just has pain. He does everything anybody else his age does, just once in a while he needs a break or asks to be carried.

So there it is.