Thursday, January 14, 2010

So Far

Collin had a seizure after the last post and I could see the day spiraling downwards before my eyes, but that was the last one I've seen and he's been sleeping peacefully for an hour and a half, which is fantastic.

I have spoken with every doctor already today. First, Collin's pediatrician stopped by our room and we had a nice talk in which he encouraged Kyle and I to stay in tune with our parental instincts through all of this and to remember that our knowledge and observations of Collin are superior to anyone else's. It was just what I needed to hear. He also gave me some good info about what we will need to do to get our second opinion in Cincinnati.

The nutritionist came in to talk to us about the ketogenic diet. They're still advising that we get Collin's digestive issues ironed out before we start it, but it seems like it will be very doable once we reach that point and we're all very hopeful that it will reduce or even eliminate Collin's need for anticonvulsants.

The attending PICU doctor touched base this morning about some tests we have ordered by Collin's geneticist - a kidney ultrasound and a slew of blood work. They have arranged for us to get all of that taken care of while we're here.

The surgeon has been in twice today - something of a miracle - to discuss our options for the Nissen issue. Since Collin is doing well with his continuous feeds, we're going to be allowed out of the ICU and into a private room, which almost got a little happy dance out of me when I found out. We're just waiting for it to be cleaned right now. We also still have the option of surgery, and a third option is to place a tube through Collin's g-tube hole and into his upper intestines to bypass his stomach and eliminate reflux. This would actually be more of a diagnostic tool than a long term solution because it would tell us whether Collin's oxygen-drop episodes are due to reflux or something else (airway issues, messages from his brain, etc.). We're still feeling that a second opinion is important, but are not certain about the order in which we'll do things.

Collin's neurologist was on call today, so we got to have a good talk with him about Collin's seizures and borderline-apnea spells. He actually reduced Collin's Keppra even though he has been having more seizures, hoping that it will help with the sedation and maybe even the apnea episodes. He seemed relatively concerned about these episodes and agreed with the surgeon that we might need to go home with some sort of monitor. He also supported the idea of a sleep study to get a more detailed picture of Collin's sleep-related issues.

So, it's only midafternoon and I'm already feeling saturated with information. Which is certainly a good (and rare) problem in the hospital, when you typically spend 95% of your time waiting around and doing nothing. Now we just have to sort through it all, weed out preferences of doctors and nurses, apply our own expertise, and make our executive decisions on Collin's behalf.


  1. Wow, it's like they all get together and decide to come talk to you at the same time for some reason. It's better than nothing, but it might be nice if they spaced it out. : )

  2. Just found out today Annie all that has happened in the last 3 days. You are in my prayers. I love you friend!

  3. We send deep breaths and smiles shared between you and your boys for all the happy moments of today. We love you all so much and greatly appreciate the updates.

  4. More prayers answered - will pray for wisdom for you and Kyle. Hope you get some rest.

  5. All of us here on the farm are praying for you. We did our own little happy dance today when we heard that little sweetie Collin blessed you with some smiles this morning. We think you are Kyle are the "most bestest" parents ever!

  6. P.S. I'm not sure where the name "Raoul Zappacosta" came from but I am hereby claiming it as my gypsy name.