Thursday, May 20, 2010

Since Tomas surgery went so well he has been cleared by pulm/GI/surgeon to try oral feeds with a honey or thicker consistency (he had 2 Swallow studies a while back and passed for honey).
He has always been interested in food and by the grace of God has zero oral aversion even though he has only been fed by mouth for 2 weeks out of his 16 months. It was a strange twist of fate to have a baby begging for food he wasn't allowed to have.
But not anymore! He loves when the little red bowl comes out and that bib gets snapped on - he is ready! So how is it going? A resounding so-so. He is interested just fine and has only grown tired a few times, most of the times I stop before he is done because he has a funny swallow. I am pretty darn sure he has aspirated or near aspirated or something akin to that at just about every attempt. His nurse was out last night and said she heard a small rasping in his upper left lung. Most of the time he will cough within a few minutes of what I think are the bad swallows, but sometimes not.  I just keep thinking he passed the study twice, but each time was only like 18-20 swallows. In order to sustain himself he'd have to swallow a whole lot more than that.
It took so so so so long (ok you get my point) to get his lungs healthy, I am overly cautious I'm sure.
This week he also switched from continuous J feeds to continous G feeds and has been running a fairly high residual. Between 45-65ml when he is only getting 45ml/hr. His GI reduced the rate slightly and said when you get a residual higher than the amount you are putting in an hour that's trouble. He said it could be he is getting to many calories for his body (he gets 752 a day), and his body is just not running through all his food because he doesn't need it, or it could be a motility issue. Easy way to find out is to reduce feeds for a little bit and see if that helps. Either way it means no bolus' in the near future at least.
Update: SLT was out today and she cut him back to 12 spoonfuls per attempt. When he can handle those 12 with no problems for a week we can up them. He is also battling some sort of allergic reaction as one of his blood counts are off. The doctor doesn't think it is environmental since he does not have a runny nose or watery eyes. It could be food, or something he is coming in contact with so I am now playing detective, and also drugging my boy with benadryl.
being goofy!


  1. love all the recent pictures of Tomas ... he really looks wonderful!

    Feeding ... the bane of my,or maybe it is her,existence!She was a nurser after her heart surgery.Even BEGAN nursing at 6 months.Was a great food eater and then seizures and chemo and all that went out the window.Now back to square one or even negative square one as she now has the oral aversion she never had.Ongoing struggle ...

    Wishing you great success as feeding continues.

  2. Eat away little man. Such a cutie!

  3. you know, Jax still can't tolerate his feeds faster than an hour, so it still feels like I'm constantly feeding him. I think after you've had a GJ for so long, it takes that tummy quite some time to get used to food again. He looks so sweet!