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....

Thursday, October 27, 2011

Day 2 (home, take 2) - Gastroenterologist Appointment

Today is going to be a short entry because I am exhausted.  I didn't sleep last night again and we had a long day at the doctors but I wanted to update on how we did at the Gastroenterologist.

First, it took forever to get packed up and ready to go.  My babies are usually pick up and go kind of kids... I'm not used to having to remember to bring food with me.  Then I had to pack up the feeding pump in the new backpack we got to make it portable.  Plus, I had to remember to bring his medicines and everything that goes along with that.

We made it to the gastroenterologist and filled out the multitude of forms they had.  We went back and I filled the dr. in on everything that was going on.  He looked over my forms and asked what ALCAPA meant so I explained that to him.  He then read over the cardiologist report from the hospital and the discharge information.  He examined Trey briefly and then we spoke about the changes we'd make to his diet.  First we're going to try a new formula, Similac Alimentum, which is for babies that have a sensitivity to the protein in milk.  It's easier to digest.  We're also going to fortify it, 1 scoop every 50 oz instead of 60 oz, to up the calories in it.  Apparently the 960 mL he's taking in now is not enough calorie wise and he should be taking in more but since he's throwing up they don't want to add more volume so they're going to just up the calorie intake with the same volume.  We'll try the new formula for 2 weeks and if he's still having problems we're going to add in Zantac.  We are stopping the Reglan.  He can also still get breast milk bottles but we'll use the formula for his tube feedings.

We're also going to up the rate of the overnight feed from 50 mL/hour to 55 mL/hour.  That way he gets done the feed earlier before he wakes up.  He thought that maybe him waking up was causing him to startle and throw up.  If we can finish the feed before he wakes up his stomach will have started digesting it and it will stay down.  We shall see.

Then at 2 we had an appointment at our Pediatrician.  His lungs sound better and his crackly breathing all seems to be in his upper respiratory tract now.  His respiratory rate was good and they're happy with how he's doing this week.  We have another appointment with them in a week so they can listen to his breathing again and see how he's doing.

Other than that we had a decent day.  He did throw up a bit this morning but it was older milk... not the pretty stuff (not like any of it is pretty!).  The nice thing about that is that it doesn't go everywhere and stays pretty localized on himself so there's not as much cleaning to do.  It just looks nasty.  We ended up skipping a feeding today because the Gastro. dr. took a long time and Trey didn't seem upset about it so I just waited till 3 to feed him.  We spent about 2 1/2 hours at the Gastroenterologist this morning and 45 minutes at the Pediatrician today.  Thankfully I was able to sneak a chili lunch at home in between there but I had to scarf it down.  Off to finish the Halloween party stuff... tomorrow is the big day!

Halloween Snack, Witches Brew Trail Mix...  Done!  The kids will mix it together in a cauldren tomorrow.

No comments:

Post a Comment