A bad day is a relative concept. To some, being late for work and having a spat with the spouse might constitute a bad day. To others, having to spend the whole day keeping a toddler flat in bed on a neurosurgery ward might be a bad day. But we have experienced truly bad days as frequent flyers at Sick Kids, so I prefer to say that today was simply challenging, instead.
It feels surreal to be back on the same unit as almost exactly one year ago, seeing the same nurses again that we haven’t seen for a year, and seeing the same stricken expressions on parents moving in and out of the ward. 5C is not dedicated to neurosurgery, but is also trauma and neurology, which means the range of patients there varies. Last year, we spent most of our time in the “constant obs” room, and the patients who moved in and out of there had incredibly different stories. The teenager who’d almost killed himself doing motocross. The toddler who’d had her arm severed in a lawnmower accident. The young girl who’d also arrived with a brain tumour two days after we did. The boy whose pancreas had been badly injured in a freak baseball accident. And us: the malignant brain tumour, increased cranial pressure, the blood clot in Gavin’s brain, the shunt. Those weeks were filled with terror, haunted by fears of the unknown path that lay ahead.
Now we’ve travelled that road and chemo has scarred us, but is behind us. It feels so very unfair to be back in hospital with more unknowns to be addressed.
Days start rather early on 5C, with the neurosurgery team whirlwinding through the unit at around 6:00. I heard the knock at 6:25 and was thinking Whaaaa? and had to scramble to Bean’s bed to help wake him. One of the docs woke him pretty abruptly, saying loudly, Gavin, wake up! I gently added a “wake up” to his and Beanie bolted up and said, What for?! Feeling self-consciously bed-headed and PJ’d, I could barely muster a response when asked if I had any questions. So our visit was about 1 minute long, but the consensus was that they were happy with how he was doing and we would go to CT later on to be sure all was well.
That officially killed sleep for us and so Gav and I lay in bed chatting and watching Thomas, and he thought he felt well enough to eat some fruit. Thus began the day of many barfs. We have been told that because of the sudden change in the pressure in his head, Gavin may feel nauseated and unwell for some days, perhaps weeks. If he doesn’t become accustomed to the new pressure situation at all, it may be that the shunt is draining his CSF too rapidly and that he requires a lower flow shunt. (Please, goddess, NO.)
When he is completely flat in bed, he seems almost well, although still a little confused about what’s going on. Unfortunately, every time he ate something today, he then became nauseated at some point later and vomited profusely. Craig joined us this morning quite early and was able to come with us to CT. He is the CT lucky charm so I left them to it, and was surprised at how speedy the scan was today. Gav was completely nauseated and was taking refuge in sleep so remained totally still for the scan.
After another snooze, he felt well enough to try food again, and ate quite a bit after Bubby brought him some Shasha cookies. Unfortunately, those didn’t last either. After each bout of vomiting, he went back to sleep again and would then wake, quite chirpy, before deciding to eat something again and feeling rotten. A vicious circle.
The good news from today is that the scan looked good, there were no visible hemorrhages and his ventricles looked to be a good size too. (Not that they were ever very enlarged) In other good news, the bulgy bit on the back of his head has sunken in again, which I hope means that that area of the cerebellum is having a chance to recover from being squeezed as it was. Like any brain injury, it will take time to heal completely, but at least we now have time to contemplate the next move instead of being forced into a complicated membrane or skull repair surgery right now.
We are hoping with all that we’ve got that Gav’s head soon adjusts to the new pressure situation, and that we can go home shortly. If he is not able to keep anything down, we may be in for a prolonged stay as dehydration would NOT be a good situation right now. Please keep us in prayers that another revision will not be required and that we will dodge yet another bullet.
I spoke today to the nurse practitioner on the unit, Patty, about the potential for a fitted helmet. I feel very uneasy letting Gav walk around with such a large hole in his skull, so I think the helmet route may be best. Unfortunately, there are a lot of hoops to jump through to have one made, and they cost… $1,500! We have yet to discover from Craig’s insurance if they will cover some portion of this cost. There also may be some other agencies that are willing to kick in a contribution. Well. It’s only money.
Wishing my Bean a good night’s sleep in hospital with Daddy. Saying a fervent prayer for reduced nausea tomorrow. You can do it Gavin!