Sunday, January 10, 2009

Seems like the weekend flew by, even though it hasn't been an easy one. We thought a lot about Coleman and his family this weekend. We also have another very close friend who is losing his battle with medulloblastoma, it's heartbreaking.

We had our own scare this weekend, spending Saturday afternoon in the ER at Stony Brook. On our way to Colby's first lacrosse game this weekend, Hannah out of the blue said that she was having trouble looking up. She said it didn't hurt, but she felt like when she looked up her eyes were being pushed down by pressure. I just looked at Dave as he looked over at me in the car as I said I was calling the doctor. One of the key symptoms of hydrocephalus (fluid on the brain) is known as Sundowners Syndrome-where you can't look up. Hannah could move her eyes up, but said it was uncomfortable. She didn't have any other symptoms-headache, blurry vision, unsteady gait.

I called the on call doctor in oncology at Schneider's and also her neurosurgeon's on call doctor (at Stony Brook, where Hannah had her brain surgery.) I got the neurosurgeon first, who said though it didn't sound immediate, they wanted us to come in for a CAT scan to check. Schneider's said the same thing. Also, it was just beginning to snow and we didn't want to be stuck in a storm if anything got worse. We dropped off Colby and Dave at lacrosse and continued on to the ER. I called my friend Amy, Alec's mom, who said that the last time Alec had hydrocephalus, he could raise his eyes also, but he had a headache. She did give us a good tip though-tell the ER that Hannah is immunosuppressed so we could speed through the ER. Many thanks to Amy-that worked like a charm. They gave us a mask and put us into a room right away.

All was speeding along, until we came to the first roadblock-the dreaded IV. I had told Hannah that she didn't have to have any pokes, no needles. Well, I shouldn't have promised that, they wanted to draw blood to rule out any type of infection, including meningitis. Not only did they have to draw blood, but they had to leave the IV in, which really made Hannah mad. She said NO, she wasn't letting them put it in. I had to make quite a deal with her to get by this roadblock-it was dinner and 2 stores of her choice at the mall. She let them put it in, but the nurse wasn't an expert, it hurt just to look at it. They drew blood, then took us down to CT fairly quickly. A CAT scan takes all of about 45 seconds, and we went back up into the room. By this time Dave showed up to wait with us.

Second roadblock-they wouldn't take the IV out until they had confirmed no infections, and a clear CAT scan. After about an hour they did come in to tell us no infection and the scan was clear. But, neurosurgery had to also view the scans and they had an emergency. They didn't want to remove the IV until after neurosurgery had cleared the scan, just in case. After about another hour and a half with Hannah rolling around and crying that SHE WANTED THAT IV OUT and WHY WASN'T I GETTING ANYONE TO PULL IT? I finally went out and told them to come in and take it out. They reminded me that there was a possibility that it would have to go back in if anything was found. I told them if we had to put it back in due to a problem, that would be the least of my worries. They came in right away and about 10 minutes later, neurosurgery arrived. They had taken the time to review her scans against her old scans they had on file. They said there was absolutely no problem with this CT, it looked much better as far as size of the ventricles, and no fluid at all.

So after much angst and quite a bit of time spent in the hospital we were thankful that all is ok. I don't even think we were emotionally prepared for a possible bad outcome. The two biggest possibilities were blockage of the ventriculostomy, the hole drilled in the 3rd ventricle to allow the fluid to properly drain from the brain, since Hannah's brain was not properly absorbing it's own fluid after her initial surgery. The doctor wanted to try this procedure so that Hannah didn't have to have a mechanical shunt put in. However, there is a chance that the ventriculostomy will stop working and have to be redone at some time. We hope this never happens of course. But, even worse than that, was the possibility of tumor regrowth, which could have been causing the hydrocephalus. Obviously very bad too.

Thank goodness that neither occurred and even though we don't have an explanation for it, we know it's not something threatening. We are counting our blessings. Today, she says her eyes are back to normal. I wish I could report that her stomach is back to normal, but lots of problems with that too. Poor thing!

♥Kim