After a completely sleepless night last night (Ty maybe slept between 4:30 and 6:00AM), we finally took Ty to the OR around noon today. Needless to say, it's been a looooong day.
The procedure to externalize his shunt was successful and Ty has been sleeping it off. It was expected to take couple of hours so Lou and I were able to get outside and grab some lunch together! Tacos and beer. I can't find the right words to express the guilt we shared knowing that we were, in some ways, looking forward to surgery so we could get away for an hour and go outside. It's embarrassing to even write those words, but it's true. The only times during our multiple hospital stays that we are ever able to get out together is when Ty is in surgery (and, of course, when we go home sweet home).
Sometimes it's hard to fathom that our life has really come to this. That giving him a kiss, and telling him every thing is going to be okay while he stares into our eyes with horror has become par for the course as we watch him being wheeled away by strangers down a long, scary corridor. That we see our 18 month old baby Gavin by Skype every once in a while, and in person every week or two. That we sit in a cramped, dark hospital room for days on end, eating from vending machines and going for days without taking a single step outside. That on some nights, we have to listen to Ty say he's hungry and beg for snacks for hours on end because he is not allowed to eat for 12 hours before anesthesia. I'm only sharing this perspective because I'm very, very tired today and not feeling as positive as I usually do. Lou and I were just talking about how it is very hard having a child with cancer (of course), watching him suffer and knowing that things may not turn out well... but what's equally hard on a day-to-day basis is living with the lifestyle changes to our non-existent daily routine that we have experienced. Like, showering in a bathroom shared by 30 people, using up my 10th travel size soap and shampoo because each time we're hoping for a short-stay.
Tomorrow, the neurosurgery team will be testing his intracranial pressure to see if he will require another VP shunt. Please pray that he is NOT shunt dependent. If all goes in our favor, we will be able to clamp the shunt that is now externalized, his body will prove to be able to reabsorb the CSF fluid without increased pressure, and we will be able to remove the new hardware over the next couple of days. If it turns out that he needs another shunt, we will be in the hospital for a minimum of another 14 days, and his treatment with be delayed until all of this nonsense with the shunt and the CSF infection is resolved. We are on a winning streak with the chemo right now, and we don't want to slow down for even a second. We want to go, go, go!!! THANK YOU for your thoughts and prayers.