Saturday, April 9, 2011

Cardiology update

John had his weekly cardiology appointment yesterday and it was loooong. First of all, a BIG thank you to ciocia Aga for coming with me and pretty much was my butler... it really does take two still to do things with this baby because I'm holding John and speaking with the nurses, then John poops, the bag is stuffed so Aga hands me diapering supplies, i change him, nurses weigh him, we wait and then he poops again, so Aga does her thing again, then the echo..., we need to switch rooms so we need to move John (in my arms) car seat, baby bag and my bulky jacket. Echo tech pisses John off, we need to give him the bottle, Aga gets it, i make sure John doesn't squirm off of the table.  Well we know but the tech doesn't that the bottle satisfies John only for the first 20 mls then we do the tube... so i take baby in my arms calm him down and echo tech continues.. then John realizes nothing is going in his stomach gets pissed Aga gets the tube feeding stuff ready...we feed him John calms down and echo continues.Then we wait for doctor to look at all pictures and Aga keeps me sane while waiting 20 minutes. So the verdict after all the shenanigans:

  • Heart looks good. Small leak in the valve but within normal for these kiddos
  • The shunt has some slight narrowing were it was sown, but again within normal for this amount of time post surgery
  • There is also some ballooning happening on the arch where it was patched up during the Norwood but not a big concern
  • we will get a call to schedule the pre Glenn heart cathedarization (sp?)around May 25th
  • we will also get a call to tentatively schedule the Glenn sometime in June, probably later part of June unless John will tell us otherwise
  • In regards to vomiting - Doctor said we are probably lucky that John only vomits once or twice daily only, and we got another med to see if it helps, he is already on prevacid and zantec.
  • Speech did not see John eat AGAIN ! since we had to feed him during the echo, but gave us additional pointers to see if Jasiu would take more than 20-25 mls by bottle.
  • Next appointment - 2 weeks
I also got to see Amanda at Hope whose rock star son, Austin, had his Glenn surgery the day before on Thursday. Austin is doing great and is already on the floor and out of the PSHU. We know that post Glenn babies recover quickly, but Austin is just phenomenal.  Jasiu needs to have a baby talk with that kid.

On other news about Jasiu, he's getting quite the jokester and likes to play with mommy occasionally. One night he'll fall asleep peacefully and other nights mom and dad do the happy dance all over the house with him to calm him down. This week he also pulled out his NG again but this time at 4am... Since then he sleeps in what we call the boxing gloves. Though I will  NEVER allow this kid to box even for a second!  In the midst of trying to calm him down and put in the NG, I picked out the wrong tube and the opening part doesn't work with the good tubes, so feeding is a pain because we need to attach an extender.  This tube will be in until this coming Thursday since we have a photographer coming to our house to take pictures of Mr. Jasiu and I will take out the tube for the time being. Let's hope Jas cooperates with mommy and the photographer.

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