Saturday, Discharge or Not?

Jason here,
Well it is true, we did get here at 3:30 am Friday morning.  Long drive 'over the river and thru the woods to LPCH we go', but we took it easy and made it here safely.  Friday we hit the ground running. Sierra had biopsy at 8 am.  For the most part, she did this one on her own.  Stacy took her to the hospital then took Lindsey and Hunter to class registration.  I was in Gage's room getting Blackwood training.  Sierra's biopsy went well, her heart pressures are perfect and we will find out rejection results today.

Hunter is now registered in 4th grade at Nixon elementary, the same school he went to before.  He is very excited to be going there.  Out of the full class, there are 4 kids still there from before.  Lindsey will be at Jordan Middle School. One of her teachers introduced her to the class and helped her feel welcome.  She will be by Sadie Perry, a good friend she had from before.  She feels a lot better about it now. The school did a great job to make sure she was with her friend and feel accepted.

Took Sierra and  Megan to PALY (Palo Alto High School) for registration.  Met up with Abby Black, Megan's good friend, and took a small tour the PALY campus.  They will finish registration on January 4th, the day before school starts.  Also met the athletic director to figure out what needs to be done to get Megan eligible to pay JV basketball.  Then off to Megan's JV basketball practice.  We sure enjoy doing 'normal' things with our kids, makes this all a bit more tolerable.

While I was with teenagers, Stacy was here with Mr. Aureleous.  We were hoping Friday was 'the day' he gets out of here... but.... there are still issues.  Main issue is the fluid retention, kidney levels, and nausea.  All tests show his right heart function is still good.  The doctors talk about this and a host of other issues each time at rounds.  With his retained fluids, poor kidney function, and nauseous, they wanted to keep him another day.

We were hoping he would be discharged Friday because.....last night the Google Ventures sponsored a private showing of Star Wars for all RMH families at the Redwood City theater.  Their were Storm Troups, and a Google cruise bus.  The experience was awesome, but it would have fun to have our Man-of-Steel with us.

Finally, I spent the night with Gage and we all slept well.

Now for Saturday, plenty of turns.
He woke up in a good mood.  Gage and I watched a bit of Bugs Bunny, (best cartoons ever). We headed out for a morning walk but then the vomiting started. What is up with that!  After a good nap, rounds with doctors, and adjustments to his meds, he is being discharged!.  What is up with that?? His right side heart function is still good, but he is retaining fluids and his kidney's are a bit strained. However Stacy made a good argument to Dr Rosenthal that she can manage his VAD, medication, weight, I&O's (fluids in and out), sodium input, appointments and other stuff.  I firmly believe if Stacy wasn't so dang awesome and acts so smart with nurse stuff, they wouldn't let him out.

Dr Rosenthal made a good point.  On average, kids on LVAD's are readmitted for a varity of things about 3-4 times before transplant.  So odds are, we will be back.  Gage's health is not perfect, but good enough to get us out for a bit.  We are excited and ready to go. The feeling is lets get out of here before they change their mind.

We swung down to the Sabroto room for a good ole' game of nerts, and now we are packing up his room.  Plenty of memories here for Stacy and Gage, he has been in this room for about a month.

Next post should be coming to you from the RMH!!!!

We are counting our many blessings
Till next time,
Jason and the crew.    

Shortly after the news were were getting discharged, Jenna (Nurse), and Jenna (LVAD NP).

Just got the call regarding Sierra's biopsy. 1A. We'll take that.