It's all about perspective!

On January 5th, we finished off Ryder's course of steroids to treat his seizures.  On January 9th, we went for another EEG to check for the chaotic brain activity.  I'm certainly no expert on EEGs, but I was sure that the squiggly lines I saw throughout the 45 minute test were the same squiggly lines we had seen twice before.  I had gone in to the appointment with my scientific journal articles thoroughly highlighted, and with notes made on the next treatments I wanted to try, and in which order we were going to pursue them. Our amazing neurologist came out to get us from the waiting room with the same sympathetic face and body language, and soft-spoken greeting that we had gotten used to when we were about to get more bad news.  When we sat down, his first words were "Well, let's get right to it.  The seizures and hypsarrythmia are gone.  The steroids worked."  To say that those were not the words I was expecting might be the understatement of the year.  Ben and I looked at each other in shock and said nothing.  The appointment was quick.  We took a look at the images from the MRI and saw the areas of Ryder's brain that are swollen (related to the metabolic condition…not the seizures).  And that was it…follow-up in six months.  (Six months seemed like an awfully long time, so I pushed to have another EEG and appointment in three months).  Ryder will stay on an anti-seizure medication until then, and from there we will wean him off and start on a maintenance medication.  I don't think I will ever forget that day.  Things have obviously been difficult the last few months, and just when we get into a routine or wrap our heads around something, another problem pops up and disrupts everything.  This was the best news we could have asked for!

Coincidentally (or maybe not…) on the day Ryder finished with the steroids we started noticing a decrease in his appetite.  Not a huge deal, he was still eating.  Two days later (Tuesday) at a regular metabolic check-up, they checked his weight, length, and head circumference.  His length was shorter and his weight was less than they had been 2.5 months earlier, (both were checked multiple times that morning) and he had dropped 50 percentiles on the growth charts .  I immediately felt guilty (darn mommy-guilt!) for not noticing, but the dietician explained that since both his weight and his length had decreased he still looked very proportional so it was impossible to notice from looking at him.  We left the appointment with instructions to get more calories in to him.  That night he was admitted to the hospital (after an episode of projectile vomiting) for IV and metabolic bloodwork and we were discharged the next afternoon.  On Thursday, he took in only 10 oz of formula/breastmilk.  He began completely refusing to eat.  I spent an hour getting him to eat an avocado/banana mixture that he had devoured in minutes a week earlier.  He then proceeded to throw up the entire bowl.  We fought with him until Friday and decided it had been going on long enough and was only getting worse.  

When we got to the hospital on Friday evening, our metabolic doctor and dietician came to check on Ryder.  As they were leaving, the dietician said, "I will see you on Monday when I get in."  My response was something along the lines of "Uh, well I really hope we're not still here on Monday, but OK"….3.5 weeks later we finally went home!

They put in an NG tube (nasogastric tube...goes through his nose, down his esophagus, and in to his stomach) to feed him and an IV for hydration.  He continued to projectile vomit multiple times a day for the first 2 weeks.  He also continued to refuse to eat by mouth and was seen daily by an amazing OT.  While Ryder was admitted to the hospital he underwent several tests (echocardiogram, holter monitor, EKG, and swallow study), all of which showed normal results, yay!  

NG tube

We finally made the difficult decision for Ryder to have surgery to put in a G-tube (a tube that goes directly from the outside of his abdomen into his stomach).  As we learned through experience, it is *very* easy to pull an NG tube out (Ben and I both did it once, and Ryder pulled it out on his own twice), and putting it back in requires a trip to emerg and an x-ray to check for placement.  The more we thought about the G-tube, the more sense it made: it stays in place, there is no risk of "feeding his lungs" if the tube gets placed wrong, he can take his meds through it even if he starts eating on his own again, and when/if he doesn't need it anymore it can be removed.

Two days after his G-tube surgery.  The lovely hat
is covering the IV they had to put into his head.

We finally came home at the beginning of this week and are still trying to figure out our new "normal" around here.  Ryder is being fed every 3 hours, and each feed takes 1 hour to complete…which doesn't leave a lot of time for getting other things done, but we are getting the hang of it pretty quickly.  Yes, a G-tube has always been one of my bigger fears, but I have realized it's all about your perspective:  Ryder has gained 4 pounds in the last couple weeks and is working his way back to where he should be on the growth charts…he is happy and there is less stress for us because we don't have to force feed him anymore…he is at home where he belongs…he took a few bites of some purees over the last two days…his homocysteine level is the lowest it's ever been...he's almost sitting up on his own...and he is SEIZURE-FREE…So, all in all there is a lot of stuff to be excited and happy about around our house these days!