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....

Friday, January 13, 2012

15 days without a feeding tube!

Trey's doing ok.  He's getting a decent amount of formula in each day, averaging about 700 mL.  This still isn't the ideal number for hydration (730 mL) but he's still not showing any signs of dehydration at all.  On Wednesday the home nurse came to check on him.  She still comes once every week although she didn't come last week because we had the GI (Gastro) appointment.  He's maintaining his weight and isn't losing so that's good.  She thought he looked hydrated, plus his heart rate and breathing rate were extremely normal which was great!  His respiratory rate had been high since before Children's and when we left Inova it was still in the upper 40's to 50's and while technically "normal" it was still high compared to the rates I was told at Children's.  He now breathes at a rate in the low 30's.

We also had the speech therapist from Montgomery County Infants and Toddlers come out for our first therapy session.  She gave me hints on how to help him find his lips to make consonant sounds.  She taught me ways to teach him the beginnings of communication.  Basically, I speak, you speak, I speak, you speak.  So after I talk I'm supposed to wait for him to respond and vice versa.  I also feel like I don't pay any attention to him.  She asked me if he banged on things yet with his hands and I said no.  Um, yeah, well at dinner tonight he sat in my lap and banged on the table over and over.  Yeah, he bangs on things just fine.  David just reminded me that we're more focused on him eating than the other kids so we tend to miss other things.  Did I notice he was banging on things?  No, because we are constantly focused on getting liquids into him.  It went well and I'm excited to see what we're going to do next week.  This week was more of an evaluation again.  Next week she is going to bring a cut out cup to see how he does with drinking from a cup... should be interesting!

There is some frustration though.  Last Tuesday at the GI appointment I was told it should take about 72 hours to hear back from the insurance and then the office manager would call me to schedule the appointment.  Well, I haven't heard anything from them since we were there.  I talked to the dr. on Monday and she said she'd look into it and if I didn't hear from her on Tuesday to call again.  I called on Tuesday and left a message earlier in the day.  Never heard from her.  Called again on Thursday afternoon - no response. Called again Thursday afternoon and finally got a hold of her at 4:30.  She had no idea who we were.  She got his file and there was no request for a GI in it.  Great.  Ok, so the dr. got busy... I can understand that.  What I don't understand is why she didn't call me back 2 days before that.  If she had called me back we could have gotten things moving 2 days earlier.  She just submitted to the insurance for approval today and hopefully we'll hear back from them on Monday.  We can't schedule anything until the insurance approves the procedure though.  Argh!  I did let her know my frustration though... nicely.  I asked her to please keep on top of this because this isn't just a "regular" reflux baby.  This is a baby that has been through open heart surgery... lots of pain..., a drug withdrawal and now has had painful reflux since he left the hospital.  I told her I'm tired of seeing my baby in pain and something needs to be done about it quickly to find out how to relieve it.  I hope I was heard.  We shall see on Monday.

In other news, Bryce is going to Legoland in Florida this weekend!  He left this evening with Grandma and are meeting Grandpa in Orlando.  He's been there since Wednesday for a conference.  I had told him a few weeks ago that he was going but haven't mentioned it since.  After I told him I thought... gosh, I should have made it a last minute surprise!  So since he didn't mention it again, neither did I!  So I picked him up from his classroom at school today with a big posterboard sign that said, "Surprise!  Bryce you're going to Legoland!"  He was thrilled, as was all of the other children in the classroom!  It was pretty fun.  I totally meant to take a picture of his face when he saw the sign but I forgot!  So I made sure to get one of him with the sign before we left for the airport.  He made it safe there tonight and heading to experience the new Florida Legoland tomorrow!

Yes, those are Christmas decorations in the background.  I have yet to take down our decorations.  I'm starting to wonder if I'll ever be able to find the time!  I'm thinking maybe in May?

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