Isolation

I haven't posted in a few days because Owen has been in Isolation.  One of his urine culutres from Nov. 1st  was a dirty sample and came back positive for multi drug resistent Pseudomonas... the same Pseudomonas he had in early June (Pneumonia) that had him on Isolation for 100 days.  I'm happy to say we got things all worked out after 72 hours on isolation and his newest cultures were clean.   Owen was thrilled to get out of going to hospital school and is happy to hibernate in his room all day.  I am the one going crazy!

 
We are holding steady with the .5 of Milrinone.  He feels good, his labs look fantastic and we are just tweaking his anticoagulants each day.  He had an echo on Monday and things look the same.. not worse.. so that's positive.  We have been trying to determine if his LAD Stent in his coronary is closed off, or if it has blood flow through it.  Inititally this was terrifying, but they said it's very possible and that his heart created collateral vessels to compensate.  It's too risky to take him to the cath lab.  The team had a discussion with the Stanford adult team (since they see this more often) and they can do a CT with contrast but the HR has to be brought down (with beta blockers) to about 70bpm.  Owen has chronic Tachycardia and his HR is 130 on a hefty dose of beta blockers right now.  There's no way that option will work.  IF there is no blood flow through the stent or it's clotted off, then we could stop a few of the blood thinners he is on.  This makes transplant and open heart surgery a lot less risky!  If we can't be positive the stent is closed off and we stop them, and he clots, we have a bigger issue.  So it's a just a matter of weighing risks.  This will be his 5th open heart surgery and the risks are increased everytime you open up the sternum.

On a positive note.. he feels great.  He is in great spirits!  We started PT, OT and we will start school as soon as this isolation is lifted.  My job is to keep him healthy and infection free.  Good hand washing and staying on top of all medical professionals to do their part (wash hands, good line defense, ect).

Oh.. one more thing.  Owen's antibody levels came back extremely low again, so still no voids on the transplant list.  It's remarkable that he was once 98% sensitized and seems like a lifetime ago that we spent every month for two years doing IVIG infusions.  It's a HUGE blessing!!!

 
We are so grateful for all the help we have back home getting the house packed up and ready to move.  Carson is in over his head with the move andI am doing my best to help being 900 miles away.  We couldn't do it without all the help and support from family and friends.  Also, Larissa watching Logan each day has been incredible!  He is happy there and loves to be with Sam the beagle.  He is thriving and happy.  Kam is working so hard at school, she has dance concerts next week and she is helping pack/move.  I don't know how we lucked out with such an amazing girl.  She is one of a kind!

We are so lucky.  Grateful.  Blessed.