Biopsy Findings -- 1B Rejection

Owen's biopsy went well and had a quick recovery (as always).  We were discharged before noon and I pushed him around the Stanford shopping center for a while.  The weather was perfect, sunny and breezy.  Owen insisted on buying peaches at the Farmers Market and that's all he wanted for lunch.  We headed back to our hotel for some Sprinkles cupcakes and Spongebob.  I convinced him to venture out to grab pizza for dinner and we called it an early night.

This morning we had a nice long clinic visit  with Dr Rosenthal and Nancy. The best news of the day is that Owen is up to 21.5kilos (47.3lbs) and 122cm (48inches). He is FINALLY surpassing his plateaus and growing thanks to 2200 cals/day.

His preliminary biopsy results came back with a score of 1B... he has been 0 and 1A before, but never 1B.  The pathologist was staining the slides and looking for AMR (antibody mediated rejection) now as well, which is usually the cause of a 1B score.  They are letting us come home so it's not something that is immediately dangerous, but SO glad we did this biopsy or we wouldn't have known about it.  Regardless, we will most likely need to return in a month for another biopsy.  If it is AMR, we will need to do some more extensive antibody testing and I pray we don't have to start IVIG again.  If you remember, we did IVIG monthly for almost 2 years (15 months pre transplant and then about 8 months post).  We will know more in the next couple days.

His echo looked the same (not terrible, not great) and his pressures in the cath lab were good.  He still has the elevated HR (135-145) and so we are going to push the Carvedilol dose up to 25mg/day.  We discussed starting Digoxin, but decided against it.  His ANC *neutrophil count is low (just under 300) so we may need to tweak some meds and just watch him for infection.  His Prograf and Sirolimus (anti rejection  med) levels were within range for the first time in months.. they have been so high!!!  We will redraw labs Monday to check his CK (creatine) levels before starting him on a statin (to potentially help CAD). 

Aside from all the medical jargon.. I loved when Dr R said.. "I hope to be having this same conversation a year from now.. even two years from now."  While we are pretty sure his heart won't improve at this point, we hope to prolong the inevitable (retransplant).  I feel like we just need to enjoy the moment that we are in and that things are relatively okay.  We all know that things can change in an instant.

After our clinic visit, Owen got to experience the six minute walking test.  They took BP, O2 and HR before his walk and again afterwards.  He was exhausted after walking six minutes straight.  I can't tell if it's cardiac exhaustion or if it's just overall muscle deconditioning.  With the help of a little Green Day on his iPad, he walked without complaining and got the job done. ;)

We are now at the airport enjoying more cupcakes (not me.. those other two are for Logi and Kam!)  I'm OCD so we get to the airport WAY too early every time.  Thank you for all the prayers and I'll update again in the next 48hours when I hear the final biopsy findings.

Biopsy Time

We are back at our second home in Palo Alto.   We had a late night of traveling last night but made it to bed by 11 last night.  Owen was first case in the cath lab today and he was a rockstar as always.  As soon as we walked into the cath lab he stopped everyone and told them he wanted to say a "blessing" (prayer).  He said the sweetest prayer ever and had us all smiling.  He will do great as always but keep the prayers coming for our little Superhero.  :) 

Life is good. :)

I am so sorry I haven't had time to blog.  We have been super busy in the desert and enjoying the last of our Spring.  Temps will reach near 100 this week and then it's nothing but heat for the next six months.  I really need to do better about taking more photos as well.  My house is clean and my family is happy so I guess I'm doing something right. :)

Owen had a rough couple weeks.  He had inflammation in his bladder causing horrible UTI symptoms without the infection.  We spent an entire Sunday in the ER running tests and all they came up with was Hemmorhagic Cystitis but no source and no treatment as it's viral.  Stanford looked into it a little more and he came back positive for BK Virus.  Not sure if we need to treat as the bladder issue cleared up after a week on it's own and his kidney levels seem okay for the time being.

On a positive note... no more labs for TWO weeks!!  After a good six months of twice weekly labs, we finally got his levels where they need to be and hopefully they will stay there.  This little break in labs makes for a happy boy.

This week a mouth full of canker sores is wreaking havoc.  Mouth ulcers are a side effect of the Sirolimus medication he started last month.  Thanks to the advice of other transplant moms, we got him a script for magic mouthwash and it seems to help temporarily.  Pray those little monsters heal up quickly.. he is in pain and eating is not fun. 

We haven't done much with HopeKids lately but we did sign up for Bumble Bee Ranch this year.  We have gone in the past and Owen loves it.  This year was no different.  We spent a few hours on the ranch and enjoyed the Hummer ride, took Old Time photos, ate lunch and met some real cool families.

Kam has been super busy at school!  I can't believe they only have 5 weeks until they graduate from 2nd and 10th grade.  Kam has had multiple projects and next week is her dance concert week. She has lots of auditions coming up in the next few weeks as well.  She has been driving more and I think she may actually get her license this summer. 

Owen has been kicking butt in PT and OT.  His teacher is working him hard at home.  He doesn't want to go to 3rd grade at school so we are exploring options in addition to his teacher coming to the house.  We are trying to convince him to try out BoyScouts because Carson loved it as a kid.  Can't you see him in his little cubscout uniform?  Mostly Owen is looking forward to his biopsy in two weeks.. he just loves them!

Logi is growing up way too fast!  He is on the go 24/7.  He is doing animals sounds:  chicken -"bak bak", dog "heh heh heh (with his tongue out)",  cow - "moo", pig - "oooo ooo".  He loves to read books all day long.  He is the best helper around the house.  Vacuums, helps with dishes, mops, sweeps outdoors... he loves to help.  He eats like a champ and only refuses sweet stuff.  We seriously love this little man. Here is a little video of him dancing the other day.  He loves to get up and dance anytime Kam is choreographing... he is now addicted to Panic at the Disco. He mouths the words (no sound) and that means he wants us to put YouTube on. Enjoy...

Sorry I have been so bad about blogging.  Adding a 3rd child into the mix has totally changed my life.   It went from a little crazy to total chaos most days.  I enjoy spending my days at home with these two monkeys and I love my husband for allowing me to do it!  Life is good. :)