2/15 Recovery Day 5:
7:00pm Well, we're heading to the OR tomorrow morning. Abby's neurosurgeon was planning on recommending a shunt placement on Friday, but in her usual, dramatic fashion, Aberdeen had other plans. Her extra ventricular drain, which was heavily sutured into her scalp, decided to come out this afternoon. Yep. Which means the pressure will be building up in her head again, which means we have to do surgery tomorrow. The only reason they aren't doing it tonight is because they can't get CV anesthesia on board that fast. I guess I appreciate that the plan and its necessity are clear, but holy moly, it could have come about more subtly. Nothing on the MRI suggested that this was something we could avoid, so, so be it. My parents flew into town this evening to help out and we're just trying to take things as they come.
9:00am Last night went well. She woke up asking for Elmo on the TV, lol. Elmo in Grouchland has basically been on a loop in our room, but whatever makes her happy. We should be heading down for her MRI any minute.
2/14 Recovery Day 4:
8:35pm Our visit from ophthalmology was, unfortunately, less illuminating than we would have hoped. While she reassured us that Abby's bloodshot eye is just part of the healing process, she did not have an explanation for the nystagmus. Everybody thinks it looks like seizure activity, but the EEG says no seizure activity, so who knows. Today was very long and pretty disheartening. Right now I just hope we all get a little sleep and don't have to move units in the middle of the night.
2:45pm We just got some less than great news regarding Aberdeen's extra ventricular drain output. Basically, even with the cranial vault expansion, the pressures in her brain are too high, most likely due to those venous anomalies we were talking about pre-op. It is believed that those veins are not carrying fluid away from the brain effectively, so even though her pressures are lower thanks to the surgery (mid-20s as opposed to high 40s), without those veins working properly, the pressure in her head will start to rise again as soon we remove the drain that is currently in place. The solution for this problem is the placement of a shunt, an implanted device that will provide an open channel through which the cerebral spinal fluid can leave the brain. Abby's neurosurgeon wanted to give her a fair chance to prove whether or not she was actually going to need a shunt post-op, as there are lots of risks associated with them, but it's looking more and more like we're heading in that direction. They want to do some follow-up imaging tomorrow, but if the scans show what the neurosurgeon thinks they will, Abby will probably be heading back to the OR at the end of the week. We're pretty devastated that this is where this week has brought us - honestly, I can hardly believe it has only been a week since the craniofacial team asked that we make our way to Houston - we were really hoping that we'd be closer to taking our bird home. We're still waiting on ophthalmology to weigh-in on her eyes.
8:45am I have NOTHING nice to say about last night (other than that Abby did fine), but we're no longer in the PCU, and are now on the neuro floor. Aberdeen woke up in a great mood and acting much more like herself this morning, which has totally made up for the nonsense overnight. We're getting lots of smiles and giggles and love for Elmo. She is still having lots of nystagmus and her right eye looks a mess (very red). Looking forward to chatting with ophthalmology at some point today. Unfortunately, Jameson seems to have come down with a cold, which is not ideal. Praying he feels better pronto.
2/13 Recovery Day 3:
10:20pm Neurosurg is consulting with ophthalmology regarding her eye movements. I'm not going to lie, these have me pretty stressed out. They look a whole lot like the nystagmus she started having a few days prior to having seizures when she was about 5 month old. It's encouraging that the EEG came back negative for seizure activity today, but I don't get the impression that they're particularly useful in predicting the future, so naturally I'm still pretty concerned. She also has what looks like a broken blood vessel or something in the outer corner of her right eye. Will have to wait on ophthalmology to determine if it's somehow related to the nystagmus. She did pretty well with most everything else today, thankfully. Just going to try to keep things quiet tonight, and then follow up with everyone in the morning.
(It took a lot of effort to get this picture in here with my app not working, but I wanted to show off her sweet smile.)
3:45pm Lots of doctors have now come by to check out Aberdeen's unusual eye movements. The critical care team paged neurosurg, who paged neurology, who ordered an EEG. It sounds like there was not any seizure activity indicated on the EEG, so hopefully this is just Aberdeen's eye muscles adjusting to their new normal. Abby has been slightly more awake today, which is when we notice the eye movements happening. She has done a little signing, been able to follow a few basic commands, and cracked a little smile, but for the most part she's still pretty out of it, despite being off of sedation for a while now. Not sure what to make of that yet. We got some of the dried blood and gunk cleaned off the back of her head today, which made me happy. Her incision is pretty gnarly looking, but should heal up nicely.
9:25am We are out of the PICU, folks. Hallelujah! We are now in our own room in the PCU, and the plan is mostly just monitoring and working on feeds right now. They are keeping a close eye on
her extra ventricular drain, which is how they are monitoring her intracranial pressure. So far, her CSF output has been very steady and unconcerning. Abby is doing something super funky with her eyes right now, and I'm praying she's just trying to open them and look around, but we're waiting on a doctor to come by and take a look.