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....

Monday, January 9, 2012

11 days without a feeding tube!

Last Wednesday we went to the pediatrician to get Trey's head circumference checked.  He is off the charts for height, dropped to 30% for weight and is at 80% percentile for head circumference.  His head is definitely on the bigger side, but it's not growing unusually fast and it follows on the same curve as the growth spurt of his height.  The pediatrician said that she's not worried his head is growing too fast and feels comfortable that he doesn't have any fluid in the brain.  Whew.  That would have opened a can of worms that I didn't want to open!

Trey's scars are getting fainter.  The scars from where the pacer wires are pretty much gone and the scars from the drains are getting much better.  The bottom part of the heart scar is much lighter than the upper part.  In person it's almost unnoticeable.  The bottom part of the scar is when he was cinched up after 4 days of being open.  They tried to close him then but there was still some swelling so they couldn't close.  They closed the rest 6 days later.  So the bottom part is 4 days open and the top part is 10 days open. 

In a few days, on January 14, it will be 4 months since his surgery.  His heart will be fixed longer than it was broken.  Wow.  I can't believe it's been 4 months.  It's so strange.  I don't want to have to go through something like that again but I also don't want to forget the feelings and experience we had during that time.   

4 months later though, we're still have small issues.  His reflux seems to have gotten worse over the weekend.  He had been weaning down on the Zantac over the weekend and that could have been it although he was on Prevacid which is supposedly more effective than Zantac.  Today was a nightmare.  He fussed all morning and hardly ate any of his bottles.  By 2 pm he had a total of 4 ounces.  He screamed while I tried to feed him a bottle and he screamed while he wasn't eating.  He exhausted himself so much that he took 2 naps this morning, but he would only sleep on me.  Of course, Cole just wanted to jump on me so it was a pretty stressful morning trying to either get Trey to eat or Cole to stay off of him.  

Cole went out this afternoon with my inlaws and Trey seemed to do better with his eating.  He started taking an entire bottle again and wasn't as fussy as this morning.  I emailed the Gastro dr, Dr. Au Yeung, this monring and she got back to me tonight.  She said to start alternating Zantac and Prevacid every 4 to 6 hours during the day and see how that goes.  She said to be aware of what medicines he had... it could be that the Prevacid itself is upsetting his stomach.  I haven't heard anything about the upper GI yet so she is going to have the office manager call me tomorrow to let me know where we are with scheduling that.  She said that if he doesn't start taking more in we may have to put a feeding tube directly into his stomach.  She said this is a pretty easy procedure, they just insert it using a needle, but he would have to have it done in a hospital.  At the same time they could biopsy him to see if he has any food allergies.  If there were any, then we could put him on a more appropriate formula.  I'm not so sure I'm comfortable of having to get a G-tube but I definitely don't want to start putting the feeding tube back in every night.  

Either way though, I know God is looking over us.  Right now though, I need prayers to help me just get through the day.  By the end of the night I feel as though I've been beaten up.  I'm clenching my jaw at night and during the day (I have TMJ bad) which by the end of the day is causing tension/pain in my jaw which radiates up to my head/sinus' and down through my neck/shoulders.  I've been seeing an oral surgeon every 3 months since I had jaw surgery in 2003 to adjust my night brace.  I clench really bad at night.  It actually has been getting better over the past year.  The doctor can tell by how much he has to balance my brace.  I saw him after Trey got out of the hospital and was happy to see that my clenching hadn't gotten much worse with all the stress I went though.  However, I haven't had pain like this in awhile so it must have started up again.  

While I feed Trey, Cole just goes wild and it's difficult discipline him while I have a bottle in Trey's mouth.  I don't want to take it out though because it most likely took me awhile to get it there!  I've tried setting him up with something to do while I feed him or watching TV but he prefers to either jump all over me, torment the dog or something else.  Today I set him up with lunch but he decided to just eat it and spit it out on the floor.  Fun.  Well, Zena loved that.  Just frustrated.  So please pray that I get through the day with my sanity and health.  

Otherwise, we're doing ok.  I'm happy that none of us have really gotten sick in awhile and have been pretty healthy.  The house is a disaster though and I'm not sure if the Christmas decorations are going to be put away anytime before May.  I need to keep telling myself though that it's ok.  Things will all fall into place in time... in God's time.

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