Stanford Visit.. LONG post!!

Yesterday started at 3:30am and didn't end until 11pm. I will be the first to admit that flying up and back in the same day was not the brightest decision I have ever made.  We were so exhausted.  We got to the airport at 4:30 to catch our 6am flight.

After we landed, we headed to the rental car center and picked up our car.  I thought it would be more convenient to reserve a car seat through the rental car company because they had to have safe car seats right?  Major ugh.  They brought me three options.. an infant seat, a 5 point harness piece of plastic from the 1990s that had a max weight and height limit of 35lbs and 35" and a booster seat that was just a piece of plastic with no cover and said he had to be 45lbs to use.  It took forever for them to track down a better seat, but he still weighed more and was way taller than the limit.. but I had no other choices.  I am never doing that again! 

Owen drifted off just as we left the airport and while I ran to Apria for oxygen tanks to get us through the day.  We made it to LPCH in time to play with the super awesome train set and eat lunch in the cafeteria.

Owen started with his echo, which he totally loves!  He asks a million times when his next echo is and just hops up on the table and is ready to go!  It doesn't get easier than that.

We headed to our room for an EKG and then talked to our transplant NP for a while.  I told her all about Owen's chest pain and how he gets really winded lately.  He sang her some songs so she could hear for herself.  She did a full exam and sent us over for an xray while Dr Rosenthal looked over all the data from today. 

Dr R. came in and we had a pretty long visit.  Owen's echo and ekg look the same... valve has regurge/stenosis and function is moderately depressed.  A comment was made that "it's a good thing we are trading this heart in soon." 

As far as the chest pain goes...
Owen had a full exam, Dr R listened to his heart and lungs, he felt his liver and all looks normal.  His chest xray came back showing nothing concerning or new where he says it hurts.  I'm going to watch him over the next week and see if it continues.  I'm not sure what's hurting or why... but just something to keep an eye on.

The good news...
Owen's antibodies came back ZERO from his last IVIG!!!  This is so huge on so many levels.  Owen's antibodies were 98% sensitized just 3 1/2 years ago.. a few months ago they were 30% sensitized.. and now they are 0!  The transplant team will still be cautious and if they do accept a heart that is positive for the antibodies that Owen has had in the past, they will use an aggressive IVIG/Plasmapheresis protocol in the OR at time of transplant.  If the donor heart is negative for those antibodies then we will consider him low risk and can possible cancel IVIG indefinitely. 

As of yesterday...all of his voids were removed from the UNOS database!

What does that mean?  Any heart that becomes available in his blood type (Bpos) and is between 30-90lbs, we can accept.  There is one other child listed in the entire western US with his blood type as of today.  Of course, that can change at any time.  I asked Dr R. what percentage of kids actually get a heart as a status 2, in his experience?  He said that maybe 10% get a heart as a status 2 because there are so many kids on life support and iv medications waiting and they take priority over donor organs, rightfully so.  He then proceeded to say, he feels that Owen is most likely in that 10% as of right now.  That is so exciting and we just need to do our best to keep him healthy!!

We talked about flu shot and immunizations...
Owen needs to get the flu shot, like always, and the entire family needs one as well.  Owen has to stay protected this year more than ever, and so there really isn't an option.  Owen also needs to hurry and get his 5 yr old immunizations a little early, but we can't do them until 5 days before his next IVIG.  Supposedly you want the IVIG out of their system, but the immunizations need time to work before the next treatment. 

 Speaking of IVIG...
Owen gets to go to a monthly IVIG treatment schedule now. His next treatment will be on Oct 19th and that will go on until he gets a heart. We won't know what treatments he will require post transplant until we get the donor heart.

Sildenafil Black Box Warning..
A few months ago, there was a black box warning released stating that Sildenafil {Viagra} in pediatric patients can cause sudden death.  Um.. scary!  Dr R. asked me if I had seen the warning and we agreed to take him off.  Owen is on Sildenafil to help improve his pulmonary pressures, but they aren't an issue now that we are moving forward with transplant, so we will wean him off.

Followup..
Dr R wants us seen by our local cardio monthly and we will go back to Stanford every other month.  So in two months, we go back to LPCH and we will also do a cath at that time.  There is a risk of putting him under anesthesia while in heart failure, but they feel the benefits will outweigh those risks, since he is stable.  He has a bunch more collaterals that need coiling since it has been over a year since we used cath intervention and he has never gone more than six months.  This may also buy us more time at home, keeping him stable, until transplant.  We also need to check his pulmonary pressures post Sildenafil wean to ensure that we aren't going to increase his Glenn pressures too much.  It's always good to have a baseline of pulmonary pressures prior to transplant as well! 

So that leave us with cardio and IVIG in October.  A trip to Stanford, cardiac cath and IVIG in November.  Maybe he'll get a heart tomorrow and none of that will even matter?! 

We left the hospital and made it to the airport just in time to get dinner and board our plane.  We arrived home at 10pm!  It was good to sleep in our own beds, but I'm not sure I'll try to do a one day trip anytime soon. :)