Konrad updates

So for those who know they know.

Konrad update.
He was moved into a step down room from ICU on Friday of last week. We were told Monday he would be ready for discharge on Tuesday. I asked them are we 125% sure. On Tuesday he threw up. On Wednesday he desaturated, on Thursday he was moved back to ICU, today he was but on 3 liter of oxygen, when the vent doing most of the work. They have put him on diarrhetic, to pull some of the fluid off, he is on a yet another antibiotic. we just need all the prayers we can for him. I know he’s strong but he’s weak right now.

It’s my birthday!

Here is Konrads wish list for his 2nd birthday an my cashapp tag
He is going into long term care on Thursday

https://a.co/c4n4VDt
Cashapp: $thickcountry

Check out my list on Amazon

We could use some prayers tonight for Konrad ❤️

You know I’m not one to bitch. Okay I am I know

But CHP called us last Monday the 13th told us that one of us needed to pack a bag bae on Tuesday Konrad would be going to PICU. For a non-traditional sleep study ( because he’s inpatient the insurance won’t pay for one). If he passed that study his trach will be pulled Wednesday morning, he will need 48 hrs in PICU for observation, then we can talk discharge!! So I did just that I went home Monday night did laundry packed my suit case an had it ready for the call Tuesday.
8am Tuesday, they do not have a bed available for him In the PICU they are 14 bed over capacity, okay fine, we will try tomorrow
8am Wednesday, still no beds check back I. The afternoon, nothing still we will try on Thursday
830an Thursday nothing no beds, we will try again tomorrow
I never heard from anyone Friday, Saturday or Sunday, so I called each evening an they said to me, we are still waiting on a bed for him, but we are hopeful.
11am Monday the 20th the Drs calls me still no bed in the PICU, but I said them, you strung me along this last 7 days, you got not only my hopes up but our daughters hopes up, we have kept the nursing agencies up to date we have nursing to interview to get him home.
Here we are 10 days later still no bed in the PICU and Konrad could have been home this weekend!
Sorry end of rant !

So this is an update I have been waiting to post.
So Konrad has started the decannulation process, we have started by being on a speaking valve during the day an a HME (heat to moisture exchanger). He has not needed his vent for CPAP for almost 2 months now! But then they added the red cap, meaning the close the trach off an he’s breathing like it’s not there, they started off at 15 mins three times a day, after only 2 weeks he is up to 1 hr 1/2 three times a day! He is on track to have the trach removed mid spring!

Our paint powder coater an hydro-dipper. Have went out of their way to support us!

Heart month!
As a heart mom, we don’t spread awareness one month out of the year we spread it all 12 months.
This is our second year celebrating heart month.

A little about Konrad Christopher!
He was diagnosed at 20w gestation with TOF non as Tetology of Fallout; meaning he was born with a hole in his heart. The wall that separates the two bottom chambers of his heart only formed 45% of the way when he was growing, this was fixed on March 16,2022 has it been fixed with what they call a venstrated VSD; meaning it is 98% closed, they left a pencil size hole in it because his body was used to it being there.
He was also diagnosed with PA known as Pulmonary Atresia; meaning he was born with his Plumonary Artery, so that is now fixed, he has two gortex conduits placed his first one on September 24th 2021, a 10mm. Then his second one on March 16th 2022, a 14mm. He will continue to need them replaced as he grows! Thirdly he was diagnosed with MAPCAS also know as, major aortopulmonary collateral arteries, these are also fixed they were fixed on September 24, 2021, he also have 17 cardiac stents throughout his tinny little heart.
He has been on bypass three times, an ECMO, but he has been has had his zipper cut open 5 times!
So I hope this post is informational to most of you to better understand what we as a heart family go through everyday!

Definitely missed this boy! He has gotten so big!

We brought some signed posters back from Louisville for Konrad!