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, October 24, 2011

Day 1 - Montgomery General Hospital - Pneumonia

So we're back in the hospital.  This time it's a hospital closer to home.  On Saturday Trey started coughing.  I was a little concerned but didn't want to be a mom that calls about every single little thing.  I talked to a friend of ours that is a doctor and he made me feel better about it... basically, Trey's color was ok and he was acting "normal" so he said just to keep a watch on him.  What made it more difficult was that it was a weekend so the doctor's offices were all closed.

On Sunday the home care nurse called to see how he was doing.  I told her about the cough and she could hear him over the phone.  She did ask if we wanted her to come to the house but I told her that he seemed ok and that if he got worse I'd call her, otherwise, she would be at the house on Monday.  We then had the whole "valium instead of methadone" incident yesterday as well which he seemed to tolerate ok... until about 3:30 am.  At 3:30 he woke up inconsolable, fussy and just plain unhappy.  It was obviously withdrawal related.  He got so upset he threw up his feed and his tube came out a bit.  I was able to get the tube back down but I had a hard time checking to make sure it was in the right place with the stethoscope because his lungs were so incredibly raspy sounding.  After he threw up, we stopped the feed.  He was supposed to get 600 mL overnight but I stopped it at 334 mL because I didn't feel comfortable forcing it into his stomach if he was throwing up.  At around 4:30 am we were able to give him his morning dose of Methadone and he calmed down in about 15 minutes.  We couldn't give his Methadone to him earlier than that because he had his Valium at about 1:30.  There has to be a space between the two.  That hour of him being inconsolable was an extremely LONG hour.  Also, this time when he threw up it was different than the other times.  It was much thicker and curdled.  Usually it looks exactly what it looked like when it went down.  (sorry if I just grossed you out)

The home nurse got to the house today at 10 am, listened to him and agreed that his lungs sounded raspy.  She called the pediatrician and was able to get us an appointment at 2:45.  After she left, Trey and I had a low key morning because I think we were both exhausted from last night.  We went into the Pediatrician and he agreed - raspy - so he sent us to the local ER to get a chest x-ray.  He thought it could just be a cold (since there is one going around our house) but he wanted an x-ray to make sure it wasn't something else.

Trey in the ER

The machine he got his chest X-ray on - first time getting an x-ray that wasn't portable!

First, I couldn't believe it... Dr. Gebru wasn't in the ER!  He's always here when we're here!  We did however, have the same nurse from our September visit, when he was diagnosed with ALCAPA so she was very familiar with him.  They did a test for RSV and the Flu but both were negative thank goodness but his chest x-ray did show pneumonia.  Ugh!  So they are keeping us here in the hospital for a day or two to watch him.  They took some blood samples but the results haven't come back yet.  They also started him on antibiotics.

Being at this hospital isn't as convenient because they don't have everything he needs.  My mother in law came to sit with him a bit tonight so I could go home and get his medicines and feeding supplies.  It was quite funny walking into the hospital with an IV pole, feeding tube, bags and medicine!  They set us up in a room that has a bed for me but they don't really have a convenient bed for Trey.  They tried a bassinet but he was a bit big for it.  He's in a crib right now but the crib is monstrously big!

Ginormous Crib!

Trey getting his overnight continuous feed

His oxygen levels haven't been that great so they just started him on a "blow by" oxygen setup.  Since he has the feeding tube in his nose they didn't want to also put a nasal cannula in his nose as well they set up a large tube of oxygen that blows out across his face.  That has really brought his oxygen saturation up.  It went from about 85% to 95%.  

Oxygen blow by setup

The blue tube is the oxygen and the blue feeding pump was brought in from home

Dr. Callahan is coming to see him in the morning and I assume we'll figure out what we will do from there.  Supposedly Dr. Gebru will be the dr. in the ER tomorrow... won't he be surprised to see us again!  This kid is definitely keeping us on our toes!  He really is a good hospital patient... it's amazing how all of this really doesn't seem to phase him.  Of course, he doesn't really know any different either though.  

Oh, and the nurse today pointed out that he was 4 months old yesterday.  I have totally lost track of how old he is!  I can't believe it... 4 months.  It feels as though he's been a part of our family much longer than that... I think its because we've been through so much already.  It's hard to believe that just a little over 4 months ago I was still pregnant.  Although, now that I think about it... my waist can still believe it!  By the end of all of this living in sweats are going to be just the norm for me.  Someday there will be secret footage of me on "What Not to Wear"!  Oh well - while I would love to start losing the baby weight (I gained more than I thought I had... anything that doesn't have an elastic waist at home doesn't fit me anymore!) this is just not the time for it.  Maybe I should have been going up and down the stairs at Inova a few times a day! ;-)

Well, I'm exhausted and he's about ready to get his 1 am Valium dose.  I just want to make sure that he gets it alright before I go to sleep. Then it's off to dreamland for me.  It's been yet another LONG day.


  1. Oh Randi, his sweet, tired expression says it all. You guys hang in there. I'm still pulling for you. Tomorrow will be a much better day.

    Trey's getting all of his hospital visits out of the way now, so he can be healthy as a horse for the rest of his days.

  2. Oh girl, praying for you guys!