Biopsy Results

 It has been a busy morning, but we got pretty positive news.  The biopsy results came back ZERO, which means no signs of rejection.  His lab work looks fabulous, but his white blood count is on the low side.  We will watch that closely, and be cautious, as he is more susceptible to infection.  We had a long visit with Dr Rosenthal and he came down to clinic just to see Owen.  It was great to get his perspective on things.  We still don't know what caused his "rejection" in April.  We may never know.  His outlook is promising, but we won't know his long term prognosis for a while.  Over the next year we will hopefully see improvement in his heart function and a decrease in his HR.  He could potentially have a long time with this amazing heart.. only time will tell.  His antibodies remain at low so no need to do anymore IVIG infusions at this time.  It has been a nice long break.

In the meantime...
We doubled his Carvedilol dose (beta blocker to help block adrenaline to the heart and hopefully decrease his HR) .  I was warned he may feel excessively tired and crummy for about a week after the increase since it is a big dose change. 

After this is changed successfully, I will change his Enalapril to Lisinopril once a day in a slightly higher dose.  He has been having perfect to low BPs lately, so as long as he tolerates those low BPs, we will be okay.

We are doing a weekly wean of the steroids to get him off the Prednisone in the next eight weeks.  YAY!  After we wean off of steroids, we can stop the Bactrum and the Fluconzaole (anti fungal).  That will all hopefully help his WBC increase a little.  His magnesium level was just about perfect, but I forgot to discuss dropping that... I'll call on that one.

We have to get labs again early next week to check his CBC again and his Prograf (anti-rejection med) levels. 

He will be on plenty of heart failure meds but we will drop most of the transplant maintenance meds, aside from the two major anti rejection meds that he will be on forever.  We will follow up with our transplant team locally (Dr Z) and head back to Palo Alto in three months... which just happens to be during Fall Break from school. 

I didn't get clarification on whether or not school is a good option when they start back on the 27th of July.  We may start homebound and work our way back to 2nd grade.  Dr Zangwill requested we draw an immune panel with T and B cells to see where those levels are.  When he was on ECMO, he was given some Rituximab and ATG which significantly lowers those T and B cells and suppresses the immune system.  It will be interesting to see what those numbers are.

We checked out of our hotel at 8am and headed to the hospital.  Owen was thrilled to find the RMH cart rolling around and grabbed a cool lego set to build on the plane.

We grabbed a couple Sprinkles for Kam and headed to the airport.  We had a quick lunch and made it to our gate.  Then then changed the board just five minutes later showing an almost 2 hour delay in our flight.  Awesome.  We wandered around and found some fun 4th of July displays.  Owen made friends with a little girl.  Now we are plugged in and catching up before heading home.  We can't wait to see Daddy, Sis and Logi tonight.  We have a long weekend in the mountains planned to celebrate the 4th.  We need a weekend to unplug and celebrate!

Biopsy and Cath Findings

After 8 hours at the hospital, we are happy to be back at the hotel relaxing.  Owen wasn't in the cath lab more than an hour.  Dr Peng (the cath lab cardio) had only good news to deliver.  Owen's coronary arteries look beautiful!  His right ventricle pressures were pretty perfect at 6.  His left ventricle pressures were around 10, which is only slightly elevated, but great considering all his heart has been through recently.  They took several samples of his heart for biopsy and we will have those results in the morning.  We have an appointment in the morning with our team and Dr Rosenthal.  We have a lot to discuss, but overall I am thrilled with the results from today. He hasn't fully recovered and there is still things that could be better, but it's pretty amazing how strong this little heart is!! 

It was a long four hour recovery in post op.  Owen was the perfect patient and only a little demanding.  He ate peanuts and waited for discharge.  Auntie Jaanesa rode the CalTrain down from the city to come hang out at the hospital with us.  It was fun to have someone to chat with and Owen won't admit it, but he really wanted smooched on.

 

We had fish tacos for Dinner with Janesa and then dropped her off at the train station.  Owen didn't know about the double decker CalTrain until today so we'll have to work that in to our next visit.  We were already in downtown Menlo Park so we stopped at Cheeky Monkey and he picked out a small Lego Set.  We are back at the hotel, treating ourselves to Sprinkles cupcakes and building Legos.  Tomorrow a busy day in Clinic, biopsy results and then we will fly home to Phoenix.  I am pretty certain we will sleep well tonight.

Back on the home front....

I'm missing these two and Daddy too.  We face time using Google Hangout, but we can't wait to get home. I'll update more tomorrow.

Biopsy Time

We made it to Palo Alto after a long day of travel yesterday. We checked into our hotel and ate fish tacos for dinner. We were bumped to second case in the cath lab today due to an emergency, but Owen didn't complain once.  We were told that they wanted to check pressures in both ventricles. In order to gain access to the left vent, they have to use the femoral artery.  That means we get admitted to the Short Stay Unit and Owen has to lay flat for four to six hours after his cath. Bummer.  I'm feeling really grateful that I didn't drag Logi and Kam with us this time.   

I just dropped Mr Owen off in the cath lab about 15 minutes ago.  He was a rockstar like always and talked to me until he drifted off to sleep.  He was a little nervous this time around and I think he just knows that things may not go as smooth after all he has been through.   His HR is still in the 150s so I am hoping that we will get some good data and information today. 

These are our kissy faces for Emery!  She has been in the hospital battling rejection for a while now... plasmapheresis, IVIG.. these kids are amazing.

Owen was thrilled to see the new display in the basement on our way to pre op.  It's a lego construction set and the images of the new Stanford Children's being built right now.  He of course picked out the robber in the set .. "that's weird.. why would they have a robber in the construction of a new hospital.  I wonder if they know it's a robber?" 

Prayers appreciated.  I will update as soon as I know more.  It looks like we will be here most of the day. :)