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, February 20, 2012

5 Months Post Surgery

Wow, I haven't updated in awhile.  There's SO many reasons for that.  Things this month have been a bit hectic and a bit uneventful at the same time.  The beginning of the month started out well.  Towards the middle of the month I started a huge push to get Bryce's classroom Valentine's Day Party organized.  That took a lot of time. It ended up taking a lot more than I had expected.  I have some other little projects going on as well, so with the added party and trying to keep up with "the norm" things got out of hand.  Then - the stomach virus hit the house.  The past week has just been a nightmare.  

Bryce woke up with it first the Friday before Valentine's Day.  He only got sick once thank goodness - but it was all over the room so there was a lot of cleaning up to do.  Thank goodness for our carpet cleaner!  He seemed to do ok over the weekend but then it hit him again on Monday.  He stayed home from school on Friday and Monday but was ok for the class party on Tuesday.  

Monday night, it hit Cole as David was rocking him to sleep.  All over the carpet and down the hallway, then again all over the bathroom.  I couldn't believe it.  The poor kid took it rather well though.  He went to sleep even with the loud carpet cleaner growling in his room.  So that took up most of the night, but I still had to finish getting organized for the Valentine's Day party!  I ended up going to bed around 4 am.  Let me tell you - I am getting old!  I used to be able to recover from that in a day or two - but no, I was feeling that loss of sleep for days!  

Tuesday after the party at school (which ended up going spectacular, thank you!), Trey let loose all over me right before we were to go out to eat.  That plan quickly changed and did carry out instead.  I got changed, got Trey changed, we both got cleaned up and he let go again.  He was not a happy camper.  

Thankfully, that was the end of the boys getting sick that way, but it then started out the other way.  Poor Cole and Trey!  It was a rough few days and the younger ones are actually still going through it.  Friday, the hubby came home not feeling so great and sure enough, in just a short few hours... I thought he was going to die.  I've never seen him so sick.  The poor guy was moaning in his sleep.  I took the kids to my parents on Saturday to give him a break and guess what?... yup, you guessed it, I ended up coming down with it next.  Thankfully David was feeling a little bit better and he took the kids to his parents the next day to give me a break and recover.  This stomach virus was no fun!  48 hours later and I think I'm feeling somewhat normal again.  Still a bit nauseous but I can function.  

Trey had a dr. appointment on Friday for his Synagis injection (RSV prevention) and we ended up back in the office today.  The poor kid had been sick all week but started getting especially fussy over the weekend.  It started Friday night and he just couldn't calm himself unless someone was holding him.  That makes it a bit hard to accomplish anything!  The pediatrician thinks that it's still the virus working it's way through him that is making him so fussy.  I just wanted to make sure his ears were ok and there wasn't anything I was missing.  I tend to avoid the dr's office because usually I know it's just a virus and there's not much that can be done for that.  The Dr's office is just germy.  I'd rather them not pick something else up.  Totally different with Trey though - I call or visit about everything!  With him I think I feel as though since the heart thing was missed, I just don't want to miss something else.  Like he's got another health mystery that's going on or something.  Anyhow,  they told me to put the kids on probiotics to help with their current issue.  Hopefully that will help.  

So for the past week things have just been really, really hectic and I feel like the house has just fallen down around us.  There have been some other small events happen that I wanted to blog about (I made baby food!) and have taken pictures of (I designed some shirts for the family to wear on Tuesday - Congenital Heart Defect Awareness Day!) but I just haven't had the time to upload the pictures or organize my thoughts... and I still haven't.  

This week though - we've got the Gastro Dr. on the schedule for Thursday.  Trey's feeding has been all out of sorts due to the stomach virus so it will be interesting to see what she says.  I've also noticed that his stomach noises have gotten rather loud and you can hear the sounds of liquids sloshing around echoing out of his mouth.  It's rather strange.  We had started thickening his formula with rice cereal but that ended up constipating him so that didn't work so well.  The one nice thing about the stomach virus was that it unblocked him.  

The other thing I'm doing this week... I'm going to try and take back my house.  Each day I'm going to pick a room and go through it.  Things just need to be cleared out.  I started a bit today but didn't get that far because my stomach was acting up.  However, I did bag up all of my maternity clothes to be donated.  I thought maybe it might be upsetting... but no, I'm done.  I didn't feel finished after Cole... I do have to say though, after Trey... I'm pretty sure that our family is complete.  I'm ready to start giving things up and moving down the road of our journey.  

Oh and wow - forgot to mention... on Valentine's Day... Trey was 5 months post surgery!  I am going to make his ECMO follow-up appointment at Inova this week!  I'm not sure exactly what that is just yet but when we left they told me not to forget to make the appointment with the Physical Therapy Team at the hospital.  I expect they'll just make sure that his function is ok and that the ECMO didn't have any negative effects.  I'll find out more about that visit this week as well.

I'll post more after his trip to the Gastro on Thursday and hopefully by then I'll have time to get my pictures uploaded from the camera!

1 comment:

  1. oh friend, I am so sorry - exhaustion makes everything harder - I've been thinking ab you a lot and will be praying for you!!