Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Wednesday, January 4, 2012

6 days without the Feeding Tube!

So Trey has gone 6 days without the feeding tube.  I just decided that I was tired of putting it in at night, he had been doing ok fluid wise during the day and so I've just been pushing fluids into him until about 1 am.  After 1 I head to bed and then get up at about 7:30.  He's averaging about 700 mL of fluid daily, which is about 23 ounces a day.  Some days are more, some a bit less.

Yesterday we went to see Dr. Karla Au Yeung, the Gastro, at Hopkins.  It was a long day.  We left here at about 12:20 pm and got home at about 6 pm.  It was a lot of waiting.  Hopkins outpatient is like a factory.  When you go in, you get greeted by security (I don't know why... all they do is put a wrist band on you, they don't check anything whatsoever) and you then push a button for a number.  The waiting room is huge and it is for a ton of practices.  It's the same place we went to to see the Speech Pathologist, Dr. Lefton-Grief.  After about 20 minutes they call your number and you go up to 1 of 6 registration booths.  You check in and then you wait.... and wait and wait and wait.  While you're waiting, nurses and doctors are coming out of about 6 doors calling people.  We were called back and his weight/height/blood pressure were taken.  He is 26 inches (um, shrank?  last time he was 27 when we were there) and 16 lbs 9 ounces.  Then we went back to the waiting room and waited... and waited. A little over 2 hours later we got called back by the Dr.

I liked her.  I like it when Dr's talk to you.  The last Gastro not only didn't seem uninterested in us, but he didn't really say much to me.  She went through the different things it could be... problems in his esophagus, slow motility in his stomach or colon or reflux most likely.  She said that it's not uncommon for heart patients that had surgery to go through a period of not wanting to eat.  It happens in adults and can even take up to a year for them to take in the calories they need to grow.  I also like it when Dr's can laugh with me.  She laughed because she thought I was so casually blunt.  I just told her like it was... I decided to take the tube out myself during the day and put it in every night.  Then I decided myself that he seemed to be taking in most of his bottles so since putting the tube in every night was stressing the beejezus out of me... I stopped putting it in to see what happened and well, it hasn't gone back in!

So the plan right now is... we're putting him on Prevacid and weaning him off of the Zantac over the next few days.  We are upping the caloric value of the formula he takes.  Normally, an ounce of formula is 20 calories. We currently fortify it up to 24 calories but she wants us to bump it up to 27 calories/ounce.  That way he'll get the calories he needs for the day in a smaller volume.  She gave me the formula for hydration and he needs about 730 mL/day to stay hydrated... but he needs 831 mL to keep growing.  She's fine with anything between around 730 and 831 on average.  She said we could keep the tube out at night but just keep watch on his hydration.  He has never once seemed dehydrated at home - ever (he has however, showed signs of dehydration while we were at Children's... I mentioned it to them but they weren't concerned... looking back, I should have been really concerned.  His soft spot was only ever sunken in while we were there).

Next step is an upper GI, which involves him drinking dye and taking x-rays.  The upper GI series will rule out any other reasons for him not eating.  For example, a partial obstruction, scar tissue or any abnormalities in the digestive system.  The Dr's office is calling my insurance to figure out where and when we could do the procedure.  They are going to call me back to schedule something in about 72 hours or so.

She also wants my pediatrician to make sure his head isn't growing too fast.  Trey has a big head... but I don't think it's really abnormally large... both Cole and Bryce had pretty big heads too but they grew into them.  She wants to make sure his head isn't growing too fast because that could be a sign of fluid on the brain.  That could cause pressure on the brain which could in turn cause vomiting and reflux issues.  We're going to the pediatrician tomorrow to get a head check and while we're there they are going to do his 6 month checkup.

So that's where we are right now.  If the Prevacid turns out to be a miracle drug and fixes him... then great, we don't have to move on.  If not, we'll keep the upper GI scan scheduled and go ahead with that.  If that doesn't show the dr. anything and he's still not eating... there are other things we can do then but she didn't want to get into all of that just yet... which was ok with me.  No sense talking about things we're not sure we're going to do just yet.  My head can only handle so much info at a time!  I'm just happy she's doing something!  I'm fighting just to get 23 ounces into this kid on a normal day.  That's not right. Today at his 6 o'clock feeding he took 60 ounces and refused anymore.  I tried for over 1/2 hour longer to get more into him but he would just scream and turn his head.

As for me, I'm just thrilled I don't have to shove that tube into his nose everyday.  It was definitely wearing on me.  I dropped the prescription off to the pharmacy today for the Prevacid and of course, it's a compound.  That means it will be mixed overnight by the compounding pharmacist and it will need to be refrigerated.  I totally forgot to drop it off yesterday on my way home.  I went today thinking I could pick it up today but nope... tomorrow.  So we start the new medication tomorrow and begin to wean off the Zantac.  I told her that if I could do a Methadone and Valium wean... a Zantac wean was no problem! ;-)

1 comment:

  1. Good for you :-) We did the same thing with Caden's tube and haven't looked back, praying the same for you!