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....

Tuesday, October 25, 2011

Day 2 - Montgomery General Hospital - False Alarm

So Dr. Gebru was the attending today in the ER.  He was pretty surprised to see Trey again.  Apparently all the prayers for Trey worked! Last night he had pneumonia, today he didn't!  The radiologists that were in today looked at his film from last night and didn't think they saw pneumonia so they ordered another chest x-ray to get another look.  After reviewing them they believe that he does not have pneumonia.  Although, the Dr. Gebru and his cardiologist are keeping him on the antibiotics that they started last night just in case they're wrong.  His lungs in the x-ray definitely show fuzziness in he lungs but since they don't have anything to compare it to they're not sure - they could be fuzzy because of the heart failure or they could be congested.  Whatever the case, they are going to leave him on the antibiotics as a precaution.

Dr. Telep was the cardiologist that was able to come see Trey today.  Dr. Gebru wanted to rule out that the reason for his congestion wasn't congestive heart failure.  He wanted to make sure that his heart hasn't gotten worse.  The good news is that his congestion is not due to his heart.  The bad news is that his heart hasn't gotten much better than when he was discharged from Inova.  I already knew that from his ECHO last week though.  I don't really find that as bad news thought because I understand that it's going to take awhile to see any improvement.  

Trey did throw up this morning in the hospital, which was a good thing because someone else could see how much he threw up. Dr. Gebru was pretty concerned about the amount that came out of him.  Although, it was probably only about half of what he normally does.  Trey's pediatrician came to see him in the hospital today soon.  He did think that Trey's breathing was a lot less labored and slower today.  The cardiologist, the pediatrician and Dr. Gebru agreed that he needed to see a pediatric GI dr.  They referred me to Dr. Duffy's practice that are out of both Inova and Rockville (just like the cardiologists).

I called the GI doctor this afternoon and they didn't have an appointment until December.  I told them what the cardiologist told me to say.... Trey is a patient with severe reflux that is aspirating and has heart disease.  That got us an appointment one month sooner... November 18.  Definitely not good.  I can't handle this throwing up until November 18.  I called the cardiologists and asked them to call to see if we can get in any sooner.  That was at 4 pm today and I hadn't heard back from them before the office closed.  Hopefully they'll call me tomorrow to tell me they were able to get an appointment sooner.  

The cardiologist cleared us to be discharged.  He didn't think that we needed to be hospitalized anymore.  He told us to follow up up with Pediatrician on Thursday to check out his breathing and lung sounds.  Our home nurse is coming tomorrow morning so I felt somewhat comfortable with going home.  I'm a bit scared of the throwing up still in combination with the weaning.  Although - today the cardiologist said that if he gets too inconsolable I can give him some Methadone to calm him down a bit.  I was worried with the interaction it would have with the Valium if I gave it too close together but he said not to worry about it.  According to him they often give it together.  That makes me feel better too because last week when he got really inconsolable last week I had a hard time even finding time to eat, the screaming was awful and he just seemed to be in so much pain.  

We got home tonight at about 7 pm.  It's been a long 2 days.  I didn't get to sleep last night until 3 or 4 because I was afraid of him throwing up in his sleep.  The hospital bed didn't angle up very high and I was afraid he would choke.  I reassured myself that I'd hear him cry if he threw up and we were in the hospital so they would come help but my mind just wouldn't shut down.  At 9:30 tonight I started his overnight feed and hopefully (cross my fingers) we won't have a huge mess in the morning.  Today we changed his Valium and Methadone from every 8 hours to every 12 hours, so I'm also hoping that we don't have a huge meltdown of withdrawal in the middle of the night.  Please keep Trey in your prayers during the next few days because I think the withdrawal is going to be tough on him.  While I was given the ok to help him out a bit... he does have to come off of these drugs at some point!  It's very frustrating. 

Trey at home - he fell asleep his his hand over his eyes.  I tried to get the picture but he moved right before I took it.

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