Day 2

Boeboe was released from Peads ICU this morning. She's now in the children's ward.

She did soooo well yesterday after the operation. Her heartrate was a bit erratic, and her bloodpressure high, but it all stabalised throughout the night. She complained about pain, even after the morphine, so they gave her ponstan, and that helped alot. She was very teary when me and hubby said goodnight. She didn't want to let us go, but we weren't allowed to stay over in ICU. We phoned, and she slept about an hour after we left and had a good night. This morning she didn't eat until I arrived. She refused the nurse to feed her. So typical of my kids...hahahaha.

She was a bit emotional this morning. She didn't like waking up in hospital and we're not there. And she was in pain. The ponstan together with the morphine did the trick, again, fortunately. She's still on an IV, and has the catheter in.

Boeboe refuses to move. Her back aches when she moves, so now she doesn't even move her legs. Her heels have started to develop pressure sores, so I'm trying to encourage her to at least bend her knees a bit, to turn her heels outwards. We've started a sticker chart, and so far it's helped a tiny, tiny bit, though I have no idea how we're going to get her off this bed by tomorrow, if she's resisting even bending her knees 1cm!!

She's also keeping her arm rigid, because of the IV line. The nurse has put a little plank on it, to help her to move the arm a bit more. Pity they used the right hand for the IV.

That's all the practical details. Now, for the emotional stuff. The dr spoke to us yesterday afternoon, and we recieved some bad news. He was unable to cut the filum. There was a big blood vessel running alongside it, so the risks were too high. The strange, weird thing though is that the filum didn't seem tethered! He said it was laying loosely, it wasn't pulled tight. It also wasn't thickened. Instead, it was even thinner than the average person's. He said there's a small chance that it was tethered to the exact spot where he cut (S2-S4) her open, and that by cutting the Dura open he may have untethered the filum.

To me, that sounds like a very unlikely thing to have happened.

I was shattered after this news. The pead came to adjust some medication dossages, and I had a chance to speak to her. She too was astonished and super surprised that the cord didn't seem to be tethered. She too had no doubt that that was Boeboe's problem. Especially after the decline we experienced the past few months. Boeboe is now completely dependant on the nappies. She also lost feeling in her bum, and gets pinpricks daily in her feet, especially the left one.

How can you have something so progressive, and it not being visible to either MRI or naked eye? We're bummed. The pead wants a repeat MRI once she's healed up. So, in about 6 weeks time. The neurosurgeon said "this isn't the end of the road yet". But oh, I soooooo wished it was! I've put ALL my hopes on this operation. Where to now?