Friday, January 25, 2008


Well, after many long months of feeding Evelyn via NG-tube ("nasogastric feeding tube"; a tube in her nose), in consult with her doctors & therapists, we have decided to have a G-tube ("gastric feeding tube"; a tummy-tube) placed for Evelyn. Evelyn is still continuing to make very good progress with eating by mouth - she is spoon-fed a reasonable amount of oiled-up baby food with most meals (the oil for compliance with the keto diet), and has done very well with swallowing. Sucking still seems to be an issue, but we're working on it. So, Evelyn still depends on a tube for her primary nutrition.

While neither Kim nor I really relishes the thought of another surgery - or a (semi-)permanent hole in our baby(!) - all the -ologists and therapists are in agreement with their independent recommendation & counsel. Other than an NG-tube typically being a short-term measure - it's been 6 months now - it can actually be something an inhibitor to re-learning to eat, as your throat is always a little bit open with the tube hanging down it. It also is a general irritant, if you can imagine something always being in your nose & down your throat. So, all opinions & advice are that having the G-tube will actually help Evelyn in the re-learning-to-eat department. In the Aicardi world, about 40% end up with a G-tube, so it's not a majority, but not exactly a trivial minority (see the Aicardi Syndrome 2003 Medical & Developmental Survey for more; Growth & Nutrition; Gastrointestinal).

Long-term, the G-tube is an easily reversible procedure - if you take it out for too long, it actually starts to close up on it's own - so if we do make good progress with Evelyn's eating, it's not really much to have the tube removed. But in the nearer- and longer-term, it lets us continue to make sure Evelyn's getting all the calories she needs, and also provides assurance that if we need to get some medicine in Evelyn quickly - it can be done. Not to mention that your average anticonvulsant tastes particularly awful when crushed (and compounded/flavored liquid versions aren't an option because they typically include sugar, which is off Evs' diet). An additional tangential benefit is that we (okay, Kim) won't have to shove tubes up Evelyn's nose each week any more, something all three of us are looking forward to. And - as much as it will kill us for Evs' cute little tummy to have a hole in it - it will be so nice for her beautiful face to shine freely, unencumbered by tape or tubes. :-)

We opted for a Mic-Key ("mickey") tube, primarily as it's the one most of the other Aicardi families seem to prefer. It is essentially held in by a little water-filled balloon on the inside, with a flat input on the outer tummy surface (see picture at the top). The other type has a more rigid internal mechanism to hold it in place. Though the other type is harder to pull out, we figured if Evelyn got hold of it and was really tugging (from intent, a seizure, or otherwise), we'd rather it "break away" more easily. Also, the Mic-Key is easier to change than the other type, which could require annual trips to the hospital - potentially under anesthesia - to change it.

Of course, at this point, Kim & I have constantly questioned ourselves - did we do the right thing having Evelyn put on an NG-tube way back in August? Are we doing the right thing now? There will always be a little bit of nagging wonder - "Would she have picked eating back up in a few more days if we'd held off with the NG-tube or the Topamax [an anticonvulsant Evelyn was on then that is a known appetite suppressant]?" However, one thing is for sure: We have one of the pudgiest, cutest babies around. We actually refer to her as "monster baby", occasionally, as most people's reaction is, "...She's huge!" - and yes, she is both big, and tall. ;-)

While that's all very cute - which we totally appreciate - it is also something more important: Healthy. Lots of kids with these types of issues end up struggling to gain and maintain weight, making them more susceptible to other illnesses, or making otherwise-benign illnesses more dangerous. If you don't have much weight to lose, your average bout with the stomach flu becomes much more serious. We feel very thankful that Evelyn - like her father - has a healthy buffer, "just in case". ;-)

At any rate, Evelyn's surgery will be Monday, 28-Jan-2008, at Egleston, from around 11am-1pm. It will be at least a one-night stay in the hospital, if not two. While by all accounts, it seems to be a pretty simple & routine procedure, it's still surgery and anesthesia - so all positive thoughts & prayers are much appreciated; in particular for the skill & good work of Evelyn's surgeon and gastroenterologist, and Evelyn's speedy recovery. :-)