Where to Begin?

For me, lack of sleep is directly correlated to my ability to view a bad day as a good one. I’m tired, therefore today kind of sucked.

The good news is that we are home. We were given our walking papers and so managed to escape the hospital’s clutches at around 3:00. We have been discharged many, many times before, so I knew that there was no way we were leaving before noon, so I mentally set my acceptable departure deadline to 3:00, and managed to achieve that goal.

Things were looking pretty good this morning. Gav woke up quite cheery after a 12-hour sleep, completely unfazed by the blood-curdling shrieks coming from our neighbour across the hall at intervals all night. I, on the other hand, had a harder time ignoring them. Of course, my heart goes out to him for whatever pain he was suffering, but it was so hard to deal with this additional disturbing noise in an environment of beeping IV pumps, an archaic overhead paging system, and extremely rattly carts rolling up and down the halls. Bean woke up at 6:30, which was great as I was actually awake when the doctors arrived for rounds. They were pretty happy with him, but couldn’t offer any other advice for Gavin’s situation apart from, “It will take a couple of days to resolve.”

I thought that maybe Gav was making strides, as he agreed to sit up in bed this morning after spending all day yesterday flat on his back. After he had eaten his breakfast, I convinced him to get in his stroller to go the playroom and check out the toys. He was happy to do this, but had waves where he clutched his head and sat back, clearly in pain. Finally, he said he wasn’t feeling well and so I took him back to lie down. Too late, though, as he promptly threw up his entire breakfast.

The rest of the day wasn’t much better. Even more disturbing than the positional nausea is Gav’s behaviour. He is just not himself. It is hard to describe, but he seems much more vague and unfocused than usual. He is having trouble remembering things he’s known his whole life, and keeps referencing things that happened a long time ago as if they happened yesterday. He is also incredibly irritable, and responds with shrieks if even remotely thwarted in any way. At other times, he is very silly, and will babble nonsense words for minutes on end. This is all very hard for me to handle for a couple of reasons. I am struggling to communicate with him as he seems to be not listening most of the time and will not answer straight questions put to him. I am also fearful that this will continue indefinitely, and my bright and observant boy will not come back to me at all. I have been told that this is temporary and that things will soon settle down, but I can’t help but feel terrified that some unknown and permanent damage has been done.

It is even harder to accept these changes, because he felt fine and was doing so well before the surgery. However, we know that the problem needed to be addressed, sooner rather than later, and now, thankfully, his brain is back in his skull where it should be. Perhaps things are just adjusting in there after being squeezed for so many months. Unfortunately, the possibility exists that his shunt is now draining him too quickly, and that he requires a lower flow shunt. The only way to find this out is to wait and see. If he doesn’t feel better in some weeks, then we may be returning to the OR sooner than expected.

For now, we are stuck at home with a toddler who can’t move. This has undone a good many things. Our patient efforts at toilet-training are now completely foiled, and his food consumption over the last few days has been patchy. I’m not quite sure how we will keep him entertained over the next little while, thoughts?

Gavin has finally, at 8:30, gone to sleep after putting up a horrendous fight with dear Daddy. Exuding heart-felt prayers for just a slightly better day tomorrow.