This weeks clinic visit was a bit different for us. My mom was working, our nurse practitioner was on vacation and we had to be there extra early ( not that that’s anything new) for Kai’s first swallow study. Thankfully our good friend Molly came to spend the day with us and the time just flew by!

Swallow Study I had been avoiding this test for a few months now, but recently Kai really seemed to be having more trouble. He has been coughing and choking a lot and sometimes for no reason (maybe just on saliva) so I finally mentioned it. I knew they would suggest a swallow study and honestly I was pretty terrified of it. Not because it’s a difficult test, Kai was totally fine stuffing his face on an x-ray machine, but I was afraid they would tell me he could no longer eat/ drink by mouth if it came back bad. Everyone assured me that at most we would just have to ‘thicken’ his liquids, so I finally agreed to the test. Sure enough Kai was aspirating. They saw it right away with the clear liquids and he actually didn’t even cough which means its probably happening a lot more than I thought. He seemed to do just fine with his peanut butter sandwich!
The recommendation is: thicken his drinks.
He never really drinks clear liquids anyway, he mostly drinks the pediasure mixed with breastmilk or a fruit/ yogurt smoothie. They said a smoothie is fine but we should thicken the pediasure. I am taking this as motivation for less pediasure, more ‘real food’ smoothie. It’s what I always strive for anyway but they make that dam formula so convenient, and of course Kai loves it because it’s so sweet and easy to drink. Looks like wel be spending even more time with our friend and savior the vitamix! Maybe the vitamix needs a proper name of it’s own…suggestions anyone?!??
There is one other tricky little problem we ran into last night that I don’t quite know what to do about, vomiting. I woke up to Kai covered in his own vomit twice last night. He also vomited seconds after I gave him his medicine (through his g-tube) that was supposed to help prevent the vomiting. since he sleeps on his back i have to assume he is aspirating when he vomits as well. poor kid, it was not a good night.
I usually skip his night feed on chemo nights afraid that this would happen. I would think to myself ‘An adult on chemo without a feeding tube probably wouldn’t want to eat after chemo so why should I force Kai to’ but yesterday he barely ate and I just couldn’t stand the though of all that chemo sitting in his system with nothin to flush it out. So I decided to hook him up…I guess my first instincts were right after all. No more tube feed the night after chemo!
He is pretty beat today and is taking a little nap next to me in the living room right now. His sleeping has been a bit ruff the past few weeks, even without the vomit episodes. He has decided that 3:00 am is again a good time to wake up for the day, blah! Makes for a long day. Hopefully we can break that new habit pretty quick! Maybe another sleep study is in order! Scared him straight into sleeping last time! Ha!
So yes the sleep study. I am actually anxiously waiting for it to be scheduled now. I know I said I’d never do it again but Kai IS having trouble breathing and it scares me to think he may not be getting enough oxygen at night. I find myself going to check on him more and more and each time I have this second of terror before I open he door…
He also had a pretty bad ‘staring’ spell he other day when his OT was here. His eyes were locked in a downward gaze to the right for what was probably 30 seconds or so. I was talking to him, touching him, even moving his head but he would not come out of it. It has always been questioned weather he was having seizures and I never thought he was, until now. It was pretty scary.
So bring on the sleep study! I’d rather live with the reality than be living with increasing fear of what could be happening.
Speaking of reality, we got one more healthy dose of reality yesterday when I asked to see Kai’s MRI again. I had been trying to look at the MRI at home but wasn’t able to see a clear image of the tumor (I guess I need to start studying radiology) so I asked to see them again. As we were looking at it Kai’s doc. Showed me he part on the scan that shows the measurement of the tumor. I have asked many different doctors countless times how big Kai’s tumor is and no one would ever give me a clear answer. They would always just say ‘ it is quite large’ or Kai’s tumor is big for an optic glioma’ or ‘kai’s tumor is larger than most, but not the biggest we’v seen’
This always left me wondering, especially when other optic glioma people would talk about he size of their children’s tumors. so finally there it was in black and white on the screen… 7.8 cm side to side and 4.4 cm front to back.
LARGE. And that measurement is just the largest part of the mass. This does not account for the beginning of he optic tracts before the chiasm or the evidence in the brain stem. They also could not get a good measurement from top to bottom. But either way a mass over 7cm is considered to be large. Now we know…
Despite all of this the reality is Kai has been soon well. He has been happier and getting stronger. He is smiling everyday, making new noises and is laughing a lot. He is more content and a lot easier to deal with these days. Finally some improvement! I am a little apprehensive about getting to excited because I know he is only doing this well because we took him off the vincristine. I am happy to keep him off of it and his team agrees but that also leave room for me to be worried that without it the tumor wil start to grow again…as always I am trying to just enjoy he time we have now, we can worry about tumor growth in another three months at his next scan.