Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Thursday, December 5, 2019

December 5th

I am still trying to update, but I thought I would do a current post for those in  our family who are looking for information about Ashy.

From the beginning....

Ashy turned four in June and we always schedule a well check visit with our pediatrician. At that appointment his blood pressure was quite high. I think in a typical situation the doctor may chalk it up to being nervous or agitated, but in our case Doctor Mashkuri is very precautious and wants to make sure we don't let little things go un checked. After a couple of small in-office tests, she had us go and get an x-ray. When the X-ray showed some concerns, it was time for a visit to PCH and a talk with cardiology. Asher was diagnosed with a coarctation of his Aortic arch. He also has a Bicuspid valve instead of a tricuspid, the leaflets are fused together but seem to be functioning great. We didn't know he was having any issues because his body had compensated by making new pathways called collaterals. There are a few other things that are really just info for Jeff and I.

With Asher and Alex both diagnosed with something called "left sided obstructive heart disease" we had our whole family screened.
Jeff- high blood pressure, overall structure is perfect
Brynn- overall structure great, no other issues
Ryleigh-overall structure great, no other issues
Alex- we know
Eden- overall structure great, no other issues
MayLee- Has a PFO (not a concern at all) no other issues of her heart
Asher- we know

The first question we usually get asked is if this business is genetic....The short answer is that many heart conditions can run in families. I personally think that, this must just come from a perfect storm of my genes mixed with Jeff's genes. Because MayLee's abnormalities are completely unrelated to heart.

Yesterday crAsh went to pre Op and was the model patient. He asked wonderful questions, was completely at ease and didn't even cry when they drew his blood for blood products they need for his surgery. (If you donated and are O+ you may have contributed to Ashy.....Thanks)
After pre op we had a few more things to do at home... his bath and washing his sheets, putting on his brand new pajamas, visiting with Grandma who came to help with the other kids and hold down the forte, and remembering to not cut off the blasted hospital bracelet. He asked about 18 times when we get to remove the bracelet.

 Here is his pre scared chest... Now he and Alex will be even more matching.

This morning we checked in at 5:45. The drive was so foggy that I sat white knuckled until we got to 201. Asher Smasher was tired but in pretty good spirits until he had to take off his own pajamas, particularly his underpants. He did not like that at all..... Daddy got him laughing when he said that the monkeys on tv weren't wearing any underpants either. We tried telling him all kind of things about how he gets Batman yellow socks and how the pajamas might have to be cut off so we don't want to ruin his new ones.... The only thing that worked was baboon bums on the telly.

 Then we talked with the doctors. His surgeon is the one who retrieved Alex's new heart for transplant, so we are working with wonderful and capable doctors, who know us.

We expect the surgery to be around 5 hours. Most of that time is "chilling him out, then warming him back up" as Doctor Griffiths says.

They updated us about 8:45 to say that he was all prepped and beginning the surgery. He was doing well.

And just another quick update to say he is on bypass. (If you haven't ever heard this, President Nelson helped develop the machine for Bypass, kind of a neat connection)

Our next update will be in an hour...


Trisha said...

I actually just read Pres Nelson's book and know exactly what this is. So sorry for the extra stress! We basically live at PCH too.
Also we may live by each other as I know the fog from this morning to get to the 201 as well. Good luck!! Prayers!!

Allison said...

Oh Brynn!! I can't imagine the roller coaster of emotions that you are all facing. It never gets easier, even when you are at that blasted/beloved Home on the Hill. Please know that we are sending love and prayers from Idaho. Thank you for the updates!

-Kyle and Alli Hicken

Momma Dixon said...

Praying for everyone involved in CrAsher’s care. Keep breathing, love you all!!!

The Brown's said...

“Baboon bums on the Telly”! You always know just how to phrase everything just right! Thanks for the update! I will keep checking it throughout the day. Asher, you and Jeff and the whole fam will be in my thoughts and prayers sweet cuz! Love you all to pieces!!

Homemaker is not a "dirty" word said...

I have said at least 5 prayers for him today and will keep on saying them. Waiting is the worst! So much love to you all!