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.

Sunday, December 8, 2019

Recovery Day 2

Asher is doing great... We were able to get rid of so much today: the foley cath, the pacer wires, the drainage tubes, and a couple of meds. The plan is to keep him in ICU tonight and continue to tweak his blood pressure which needs just a little bit of medicine still. He has been pretty sleepy today, but has been able to eat and get up into a chair and sit for a while. That was rather traumatic for me and and him as he hurt and would cry out, but not cry for long. He was able to sit and eat Ramen and have a couple of slushes. Last night Ryleigh came for a visit, he was asleep for all of her visit. And today Grandma brought Eden, Alex, and May for visits. He also slept for most of that.

Thursday, December 5, 2019

It feels a bit like life on repeat for more than just me.....

I am sure we have completely freaked out some of the hospital staff...

I tried to find a picture of Alex after the Fontan, maybe later...

Recovery has been moving along... He has moments when he wakes up and is scared and we calm him down the best we can by tickling his arm and talking about what he has going on so he is familiar with the strange things coming out of him. Seeing him like this, smelling the same smell of soap and tape, being in a dimly lit room with the bubbling drainage tubes and the machine beeps and alarms.... yeah, it feels...... blah..... hard, similar, but not hard because we love everyone here... does that rambling even make sense... it totally does in my brain.

know that we are doing well... those prayers in our behalf have been felt. Every encouraging word, via text, call, message, DM or what have you is appreciated....

his incision looks amazing!!!

He's all done

We just spoke with the surgeon. He said that the surgery went very well. It was pretty straight forward, Asher is doing well. He was able to correct the coarch. It was very pinched at about 2mm, when usually it is about 10mm. Now our biggest concern will be controlling his blood pressure. The doctor mentioned that this will keep him in the CICU a little longer with his body relaxed and sleeping to make sure that he has a good chance of healing up. We are waiting for him to get cozy in the ICU and then we can go see him.

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...

Monday, November 25, 2019

May 1st

Teacher appreciation, Eden has two teachers because of being in the French immersion program. She wanted to support and so love to both teachers, one teachers favorite color was pink and other is blue. So she compromised and decided to wear both. It was so funny to have her wear this shirt. Although, I did have to write a disclaimer that I loved her teachers and that we never want to offend them. We simply thought it was a clever play on words.

Her shirt says

Vau Met
Say it out loud, you know that's funny...

For Miss Vaughn and Madam Desmet.....

next year with her English teacher getting married and her French teacher taking her married name, no one will be able to use this joke.

And Then There Were None

What an amazing experience for Ry.. She played William Blore in in this Agatha Christie horror production. She has never played a male role before and sometimes throwing her voice was tricky. Ry had to wear a wig and 1940's mens's clothes... that wasn't even the start. On closing night the power was knocked out at the Pioneer Hall where the production was being held. Which wouldn't be so creepy, except that Pioneer Hall is located right next to the Trax line and the cemetery. So with the rain coming down and the Hall darker than normal we watch until it was too dark, then we opened the back door and put a car in with it's head lights shining on the stage. Ry attributes everything to these creepy dolls we found near the cemetery. Some kids must have been doing some crazy rituals. 

Daddy and I on date night to see Ry...

Friday, November 15, 2019

April 11 Yellow stone

Yellowstone closes it doors to cars and let cyclist have freedom to ride the park. Even though there is tons of snow, all the animal are out and totally makes up for it.