These are pics from the cards office.
We first saw the urologist this morning. Isaac has fluid around his kidneys when he was little....now..the fluid is gone!! We don't EVER have to see this doctor again!!! YEAH! (although...he was very nice. ) But, it's SO NICE to cross a specialist off your list!
Now...onto the cardiologist appointment. Dr. Mayman could look at the right ventricle and tell that it had gotten larger. The valve is leaking too much. He said on a 1-10 scale (10 being ready for a new valve)....we're at a 5.4. So...he said looks like September. He said that we should be able to get through the summer with no heart surgery (as long as nothing else pops up), but would suggest we get it replaced before RSV season starts up again (considering that if it's around...he's going to catch it). He told me to go ahead and book our summer vacation...just book it early! THAT's ONLY 7 MONTHS AWAY!!! That means that stinkin' valve didn't even last a full year!!! Well....doesn't that just stink! But, 7 months with no surgery would be awesome!!! OH WAIT...he needs his cleft palate repaired. OK...we go to Stanford for a consult in March. I'm sure they'll conference and let me know if we should get it repaired before his next heart surgery...or WAIT! It's really not THAT important to fix it sooo soon....because he isn't speaking. BUT, food and milk (or throw up) goes up his nose...and that just makes him SO mad. So, if it's safe to get it fixed before heart surgery...I'd vote to go ahead and fix him up!
He's still really congested, coughing a lot, and feverish....but, he doesn't have the steroid attitude YET! He slept pretty good last night. I can't even believe it!!! He doesn't seem to be any better, but certainly no worse. So...maybe this is as bad as he'll get it.
We go in tomorrow morning to see the Opthamologist about the crazy eyes! (Can't wait!) and he'll get his RSV shot on Thursday (she might try to draw blood again for that immunology panel that we NEED). and Friday...I've got NOTHING on the schedule!!! I'm going to stay in my jamies all day! Thanks for checking on us.
7 comments:
What kind of valve did he have put in? Now I am so sad :( Did Dr. Mayman say why it wore out so fast? I am just so curious.
On a side note, we just sold our tv to someone who had her tricuspid valve replaced 7 years ago and a pacer put in and is doing very well. They used a bovine valve (she is in her 30's and it was from a random bacterial endocarditis episode) but what great news that she is doing so well...and has had 3 kids since the valve replacement. Something for all of us valve needers to aspire to.
I am glad that he does not ever have to see the urologist again! Way to go getting rid of doctors!
NO SURGERY! NO SURGERY! NO SURGERY!
Love ya,
Samantha
Isn't it ironic that you have to take Isaac to get his RSV shot when he has RSV!! UGH!!
So glad about the urologist. One down....
I hope you're going to take the doc up on his advice and book a vacation this summer. Even if it's a small one - you deserve it!!
~Cindy
Isaac looks better in these pics. When I left over the weekend, he was looking bad. I'll go ahead and plan our Disney World trip. We will still make mom go with us. July in FL will be okay. And remember, I still don't mind taking Eli on the Spongebob cruise.
OK, seriously, Kathy, I just about fell over and my heart dropped to my stomach thinking Isaac was admitted BECAUSE YOU POSTED THOSE CARD PICS FIRST WITH NO TEXT!!!! Was it on purpose, cuz that was kinda a good scare... I am soo breathing a sigh of relief that he's plateaued *hopefully*. And congrats (GOOD BOY!!!) on dismissing the urologist... so happy on that front... kamaile
Thank you for the warning about the pics. I would have freaked out.
I am bummed to hear the news about the valve. Do they know why it didn't last that long? I was curious too, what type of valve was it? Arianna did not have a valve placed so I'm trying to do my research before she needs one.
As far as his cleft palate surgery goes...will that be at Stanford? I forgot he had the cleft since you don't mention it much. I'm sure they will let the surgery be done, but then again I'm no doctor.
Tomorrow is our PC appointment and I'm scared as hell. And we have nothing scheduled for Friday either...definintly a pajama day over here too!
I'm glad to hear Isaac isn't getting worse but hope he starts feeling better soon.
Well, looks like Kat has been eating too much chocolate. Who would have thought it would show up in the blog?
Little Isaac looks as happy as can be. Most babies cry at Doctor's offices. Isaac seems to LOVE his doctors. I guess they are just part of the family.
Have a good day today, and PLEASE give Mandy some dates so she can go ahead and plan our summer vacation.
That is the bad thing about cadaver tissue...
and all kiddo's are different...
so Dr. Hanley says...
we were told it could be every year, every two years, every 5 years.. we'll never know... just keep checking w/ the ECHO..
it truly sucks.
LET'S KEEP PRAYING FOR THOSE HUMAN GRAFTS...
THE FDA DID APPROVE THEM RECENTLY.
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