The End of the Experiment

I am trying my utmost right now to quash some very discouraged feelings I’m having.

The good news is that we were discharged from hospital today. The bad news is that we are no closer to understanding what it is that is plaguing Gavin.

The past two days in hospital passed quickly, and we were lucky enough to have visits from loads of friends. (Thank you, thank you, lovely people!!) Gav feels that he has really hit the jackpot as everyone who came brought fun presents, so he has been busy bragging about all of his new Lego. Despite being tethered to a monitor, he dealt with all of it well, and loved keeping the unit volunteers busy playing with him.

Unfortunately, we were unable to get any useful information from the ICP monitoring. We had hoped that he would, at some point, feel yucky, so that we could see what was happening on the monitor whilst he did. Would the numbers be too high? Indicating a blockage in the shunt, perhaps? Or would they be too low, showing that his shunt is over-draining? But he didn’t feel sick the entire time that he was hooked up. And that was the first 48-hour interval in many weeks.

The window to keep the wire in is 48 hours, and towards the end of the time this morning, Dr. Dirks made the decision to pull the wire, as there was no evidence of unusual intracranial pressure reads.

Once the decision was made, some doctors came in to remove the wire and the stitches. Having stitches pulled out of your scalp is very uncomfortable, but Gav handled it fairly well, although he did take a couple of breaks to shout at the doctors, Hands off! Just get away from me for a minute! Ah, if only we could all express ourselves as honestly as children do. The finally last tricky stitch was gouged out of his head – so he now has two very nice incision scars to go along with all the rest.

As soon as he was bandaged up, he was back to his old tricks, and was happy to have some playtime with our little buddies Charlotte and Zy.

The discharge papers were soon ready, so I packed everything up, and prepared to leave with a heavy heart. I just felt, instinctively, that although he had been well, it was not to be a lasting well, and that as soon as we got home, it would be business as usual with him feeling terrible.

Sadly, my negative predictions came true. He and I came home and found that a package was waiting for him at the post office. (An early birthday present from Aunty Meaghan and the gang.!) He wanted to walk over to the shops, so we went off together, him very high energy, and me full of anxiety that he would tumble and bang one of his gauze-wrapped incisions. That didn’t happen – thankful for small mercies.

Upon arriving home he wanted to watch a movie and demanded pasta for dinner. The moment that he sat down to eat it, he got “the feeling” again, for the first time since Wednesday. Back to the couch, and then quickly thereafter to bed without dinner, and straight to sleep.

Neurosurgery now feels that there is nothing wrong with his shunt. But there is no other good explanation for why he feels the way that he does. And now, having been effectively dismissed by neurosurge, I am back in the position of watching, waiting, managing, without any medical professional who can shed some light on his condition.

The cumulative stress of the last couple of months was enough for me to have my own major meltdown tonight. I felt (for a short time) that I simply cannot do anything more. All of the appointments, medications, experiments, and holistic therapies have done nothing but exhaust me. I am trying to tap into some hidden well of internal energy to just deal with our normal daily life.

Without an answer or any course of treatment to take, I just don’t know what to do next. The only positive I can take from this is that he doesn’t have to have another surgery soon.

Tonight, I sat with him for a few minutes before he went to sleep. He didn’t even want a story, he was completely exhausted. His little face was troubled. When I asked him if he was okay, he said, Yeah, I’m okay. I’m just worried. I asked him to elaborate, and he said, I just really want to go to the cottage tomorrow and I think I’m going to be too sick to go. I assured him that we would find a way to go, no matter what happened. That we would celebrate his birthday together with the family.

None of it will be perfect, but nothing ever is.