Day 98 - Status 1B

Sorry I haven't posted this weekend.  I have been busy trying to make arrangements for discharge.  Meds require authorization, medical flights need to be scheduled in AZ, and I'm packing up 14 weeks worth of "stuff" into two suitcases.  It doesn't matter because we are two days from freedom!!  Owen can go outside without a gown (I'll still make him wear a mask).  The plan is to discharge Thursday after Carson and the kids fly in.  Owen isn't allowed to stay at the RMH due to his isolation status, so we have a hotel around the corner.  We will have a weekend as a family enjoying the amazing Palo Alto weather.  Owen and I won't be able to go home until Tuesday after his clinic visit.. but then we are HOMEBOUND!

Owen continues to do so well!  His neutropenia completely resolved itself which is amazing!  He is eating, tolerating feeds and gaining weight.  He seems like he is back to his baseline when we came in 98 days ago.  It's all just incredible!  Since he is doing so well, we dropped his listing status to 1B on the transplant list.  He still won't have any competition because there is no one listed in his size and blood type anywhere in the Western US.  I love that his blood type is B positive.. it suits him. :) The other great news we got was that his antibodies are still very minimal and there are NO voids on the transplant list.  With the Pseudomonas and blood transfusions we were nervous that those antibodies were going to spike.. another blessing.

The hospital librarian made his day when she showed up with the newest Diary of a Wimpy Kid book that she specially ordered for Owen.  It came in the nick of time.  He has read the entire series this summer and we can't wait to round off our stay with the final book.

Owen's appetite is making me so happy!  He can't stop talking about all the "non hospital foods" he is going to eat when he breaks free.

I caught a nasty cold this weekend and have worn a mask 24/7 (even in my sleep) to keep Owen safe.  I am over it now for the most part and will wear a mask for another few days to be safe.

Mr. Logi caught some nasty virus and had a tummy bug with fever this last week.  We had labs drawn to make sure he didn't have elevated WBC (indicating an infection) before they flew up this week.  He was awesome or labs and only whimpered a little but they got him in one little poke.  When I called the lab to let them know Logi was coming in they were so thrilled to hear from me.  They hadn't seen Owen in three months and we are usually there at least once or twice a week.  They feared the worst and I was so happy to tell them we'd be back for labs soon. Logi was fine and kicked his virus!

I can't wait to snuggle my other kiddos and sleep in bed with my husband.  Logi has been missing his Mama! 

We are so blessed!  I've read back on my blog posts from those days in May and hearing the words "we are losing him.. there isn't much we can do." I remember signing the consent to take him to the cath lab knowing that he was most likely not going to come out alive.  The pain... I am just so grateful. 

Team Meeting

We met with the team today and came up with a plan.  They all feel like it's in Owen's best interest to go HOME to Phoenix!  The idea is to LIVE life and not sit around waiting for a heart.  There are so many things that need to fall into place first.  It will take some time to get a plan in place, but tentative discharge will be next Thursday. 

 

Owen's status is currently 1A by exception.  He has severe CAD and a stent that has occluded once holding the LAD open.  He should be on a mechanical device but doesn't qualify for one.  If he had a device, he would be status 1A, so this is the basis for the exception.  We aren't sure if he will keep that status or be dropped to 1B yet.. the team is convening and they have to talk to UNOS as well.  Either way.. we can be listed at Stanford and wait in Phoenix.  We did this in 2013 and had 3 life flight companies on call at all times.  When the offer comes, we drive 15 min to the airport and get on life flight and head over to Palo Alto. 

 

The team will be talking with our team in AZ to fill them in and have a plan in place.  How often do we need to be seen (probably weekly), echos, labs, ect.  There is plenty to discuss but nothing out of our 'norm'.  We have a whole new set of medications so they will start getting all the prior auths done on those now through the insurance so I can pick them up early next week.

 

A heart offer can come at anytime... so we just need to be prepared for anything. Part of me wonders if we'll even make it home in the next two weeks or if an offer will come before then.  Oh the unknowns...

 

I am terrified that something may happen outside the hospital but have to let go of fear and trust that everything will be okay.  Live life, make memories and pray that he stays stable.  They are going to provide me with discharge CPR training and kits to share with family/friends that will be around Owen.  Cardiac arrest is a very real risk again. 

To say this boy is happy would be an understatement!!

Goodbye Milrinone

The best news of the day is that we are officially OFF Milrinone completely!  We turned it off yesterday morning and he has done just fine.  He continues to gain weight and has more energy than he had coming here thirteen weeks ago.  I can't believe we have been here 13 weeks ... 91 days to be exact!  

 

They are doing his echo today and we started him on Enalapril (heart failure med). We added that to the Lasix, Aldactone, Digoxin, Prevacid, Periactin, Prograf, Myfortin, Iron, Plavix, Asprin, Coumadin and Epogen injections.  Owen is still listed status 1A (by exception).

 

Tomorrow afternoon we have a meeting scheduled with the team.  He has labs in the morning and we'll have all the data from today's Echo and EKG to make the best decision on how to move forward.  We would appreciate prayers and good thoughts as we have big decisions to make. 

 

Owen has been keeping up with his school work.  We started multiplication and he already has so many facts memorized. he is a quick learner. We explored the globe, continents, oceans, and are working on countries now.  My parents and Gigi sent him a microscope with tons of slides for science and he loves it!  I'll have the nurse help me make some blood slides tomorrow during labs. So cool!

Owen has a tooth hanging by a thread so he's deciding which nurse is allowed to pull it.  He is making bank on the tooth fairy this week.

Back home...

Kam is busy with school.  Carson is busy with work.  Logi has a tummy bug and isn't feeling great, but they are keeping him happy.  This was yesterday afternoon and he doesn't look to be suffering so I think he'll survive.  I miss this crew back home.  We miss home.