March 13, 2012

Calm Before The Storm

Today, as anticipated, was a lot less hectic compared to yesterday.  No procedures, no conferences, no changes in medications just a lot of time to relax and enjoy the amenities provided by the hospital.  Tim spent plenty of time in the family life center playing video games and board games with his dad.  The big score was a round of bingo that Tim won allowing him to pick out a special prize, a rope shooting Spider-Man web shooter.  Tim also got a visit from his Grandma Chris and Great Gandma Rosie, unfortunately Tim was feeling a bit antisocial during their visit.  Other than that a tasty lunch of Chinese food was a highlight of his day.  Mom, Lou and Rosie came to visit for dinner time and a little playtime this evening too.

Tomorrow Tim will be undergoing a cardiac cath to test the pressures in his heart and lung, which was a little sooner than we originally thought which is a good thing since the results will provide the remaining answers we're all looking to get in order to make decisions about how the rest of this process will go.  If the pressures are too high Tim will likely head to the PICU for a few days to get started on a medicine to lower his blood pressure which could lead to some complications which is the reason for staying in the PICU.  On the bright side, if the pressures are low enough and everything tests out in a very positive way Tim could potentially be released to home for the time being.  We're scheduled for the 3rd case of the day tomorrow, which means it won't begin until around or just after noon.  Dr. Wax will be performing this cath, as he has done several of Tim's in the past.  He's usually pretty good about giving us some feedback about results right after the procedure is complete, but in this instance we likely won't get a full picture until later in the day or the next day when the rest of the cardiac team have a chance to review the results.

We have slowly started making Tim aware of the larger picture he will be dealing with.  He's aware of the cath coming up tomorrow, which he's not really happy about.  He also is aware that his heart is sick and that it will likely need to be replaced.  He's also not happy about this mostly because he thinks it will take "50 years" to get over.  He's told Jeff that he doesn't want to lose his pacemaker, we're assuming because he thinks it is part of what makes him special.  We haven't told him he may need to stay in the hospital until his new heart is ready mostly because we aren't 100% sure that's going to be the case even if we're pretty sure it will be.  Better to break that news to him only when we know it needs to be told, especially since today he started asking about when he would be able to go home or go outside.

Other than that, not much else to report about today.  We would like to thank everyone for the outpouring of support over the last several days.  Obviously this is a tough time for the family, but knowing that we've got so much and such strong support behind us we're sure we can get through anything that is in front of us.  Much love and thanks to everyone who's offered prayers, assistance and empathy, it really means the world to us all.  

1 comment:

jaydub said...

Good luck today. Positive vibes.