No More Oxygen & More Progress With Appointments!

Today we had our follow up with A’s paediatrician. Oxygen is now off but we will be able to keep it here at the house for a year now which will be nice in case he gets sick and needs it. We talked a bit more about A’s spell being seizures and he seemed okay with me not agreeing that this is what is happening. But like he said, it has to be neurological, cardiac (which we don’t believe it is), airway related or reflux. Now we do know that A does have neurological issues and reflux. I have myself ALWAYS believed that he has some airway issues happening but it has never been investigated to my standard.

His ped was doing a referral for A as well to London Children’s Hospital for a gj button! I hope that things get going with this too because I would love to see how A would handle small g tube feeds. Even if I have to do j feeds during the night to get most of his calories into him it would be awesome to get to the point where we could do some bolus g tube feeds.

Sick Kids called AGAIN today. Yes, it is crazy how for some reason everything is coming together but lets all keep our fingers crossed that we continue this way! They were just calling to let me know that the referral for ENT was done and specifically for Dr. Papsin which is exactly who I want!

The other team at Sick Kids called yesterday to let me know that the feeding study was being arranged as well as the sleep study. I can hardly believe it!

I put up our Christmas tree on Tuesday night so here are some pictures from then until tonight!




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4 responses

  1. Anonymous

    haha! Looks like he’s back to himself. Love the picture of Ashton and Jeff!-Vickie

    November 23, 2007 at 2:00 am

  2. Melissa

    He is sooo darn cute!!! Nice to see those smiles again. And we have the same laptop!

    November 23, 2007 at 2:15 pm

  3. Miracles

    YAY ASHTON!!!!

    November 23, 2007 at 7:14 pm

  4. JuliAnn

    I don’t want to sound pessimistic, or curb your optimism in any way, but I thought I would just share our experience with Taylor’s GJ tube. Taylor never was able to tolerate much in terms of g feeds while he had this tube. The GI told us that the J tube actually blocked his sphincter from his stomach to his small intestine, and therefore his stomach could not empty well enough. I understand that T’s problems are vastly different than Ashton’s, but we ended up just cold turkey having them take out the J tube. T has been on straight G tube feeds since July 30th now. There are times he has a lot of vomiting, I would say we probably average at least one per day, but for the most part he tolerates them ok. He continues to accept tastes of food, but oral feeding is slow going. I hope this helps, best of luck to you and Ashton. Glad to hear that things are going better!

    November 23, 2007 at 9:53 pm

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