No AMR and Mother's Day

I already posted on FB, but I wanted to say the best news of the week was that Owen's biopsy result came back from pathology and he does not have AMR (Antibody Mediated Rejection).  The plan is to just treat him with increased meds and we will follow up the first of June for a repeat annual biopsy.  So sorry it took me so long to post here.  I get online to post and then I get ADD and end up on Facebook or start tackling my "to do" list and then I forgot what I was doing in the first place. 

Mother's Day weekend was wonderful!  On Saturday, Gma Monica and Gpa Todd took all the girls to brunch and to see Annie on Broadway.  It was their Christmas gift this year and they looked forward to it for the past five months.  Kam felt super crummy but didn't want to miss out.  I ended up picking her up just before brunch and she never did make it to Annie.. poor girl.  She was so miserable.  Now that (almost) a week has passed and I have caught whatever junk she had... it's awful.  I don't know how she is functioning at school and with dance this week.

Sunday was Mother's Day and wecouldn't wait to see the newest Marvel flick.  Owen has been talking about it non stop so we went to the first showing of the day... which also happens to be naptime.  Logi slept through 95% of the movie (thank you son).  The biggest Marvel critic (Owen) gave it two thumbs up.. and he won't stop talking about the previews for the upcoming movies.   

We spent Mother's Day with my fam at Nana's house.  Kelli went and picked her up from the nursing home and we had a great time. I love taking selfies with her because it's the only time she'll actually look at the phone or camera.  :)

Here is my mom, Sis, and Nana... and of course I'm making my creepy selfie face because I always do. Selfies are a skill and I am challenged.  Betty has a wicked shiner because she fell pretty hard last week.  She can pull it off though.

Here is my Sis and her girlies.  I should have gotten one with Mom and Gigi... next time.

My favorite little three people make me the happiest mom alive. I am so thrilled they are mine and I get to spend my days with them.  My only wish is that I could pause time just for a second.  They are growing up so fast.

We are counting down the days until school is out!  Kam only has one full week left and we are FREE!!!  It's getting hot and it's time for a break.

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.  :)