Wednesday, January 13, 2010

Next Test, Etc.

We spoke with both a neurologist and a surgeon today. Nothing very new came from the neurologist, other than the go-ahead to try the ketogenic diet once we get Collin's digestive issues all sorted out. The surgeon looked at Collin's g-tube study from this morning and said it looks like part of Collin's stomach might have gotten pushed up through his Nissen sort of like a hernia and is causing an uncomfortable vomiting sensation whenever food is introduced. The radiologist, on the other hand, thinks that Collin's Nissen has 'slipped' and is no longer working properly. In order to be sure, the surgeon ordered a more detailed test tomorrow in which Collin will have another contrast solution inserted through his g-tube and then have continual pictures taken over the course of an hour. This will help us determine whether he is having any actual reflux (which I can't imagine, because after seeing him retch as violently as he did yesterday, there's no way nothing would have been coming up if the Nissen was open) and what to do from here.

Then Collin started having seizures again this afternoon. Honestly, I wasn't that surprised considering the last day he's had. He had barely slept in almost 24 hours, had 'vomited' up all of his medicines from the night before, and hadn't eaten in almost a day. The challenge was getting them to stop so he could finally get some sleep and start feeling a little better. We gave him his evening clonazepam dose a little early, but that didn't do the trick, so (after a scuffle with the nurse) we gave him one more, which also didn't cut it. His evening dose of Keppra seemed to help, but didn't completely eliminate the seizures, which is necessary for Collin to ever go to sleep. So, we ended up agreeing to a dose of Ativan, which finally pushed him over the threshold and into sleep.

Just to keep things interesting, Collin launched into some apnea-like spells in the middle of the night, in which his breathing rate would drop, then his heart rate would drop, then his oxygen levels would drop. Eventually, either on his own or with someone flicking his foot or smacking his cheeks, he would resolve things and continue sleeping. It made everyone nervous though, and the doctor on call ordered him to be put on oxygen to prevent the oxygen saturation drops during these 'episodes'. It was a little bit like wrangling a pudgy little crocodile when we tried to get the nasal canula in, but two adults finally prevailed against him and he has done much better since. Now we just have to determine whether this happened because of all the medication he got tonight for stopping seizures or because he has an actual issue of some sort that could involve having him on a monitor and oxygen at home during the night.

This is the part where I sigh and stare into space to the right of your head and can't think of anything else to say.

We're just tired and worried and beat down. We need some answers and some rest.


  1. Hang in there, we are praying for all of you.

  2. 4:31 defintely suggests a serious lack of sleep. I don't know how you find sleep, though, with everything that is happening. Thank you for updating the site even when I know you have a million things on your mind. We've been worried, and it is so nice to know what's going on. Lots of love...

  3. Answers and sleep. Answers and sleep. Answers and sleep.

    That's my new chant.

    Love you. And I'm with Jessica. Thanks for keeping us updates even though you have a ton going on.

  4. We pray for peace for your family. We pray for your continued resilience as amazing parents. We pray for one step at a time. Love you!

  5. Annie and Kyle - praying for all of you. Keep up the quest to get the answers you need! Will pray for wisdom for you both and for the doctors and nurses. Thanks for the posts.