Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Wednesday, March 27, 2013

Beautiful boy!

3/27/13 My bright eyed boy watching some cartoons with his big sister Addi ~ Rachel

Sunday, March 24, 2013

At Home!

3/23/13 Our first 24 hours of being home was a little rough on Ryker, mainly because he was still coming off of the many Meds he needed to keep him sedated enough to stay intubated. But now, thank goodness, he has had a much better day!! He is getting past the withdrawals & recovering more & more each day from his last Cath. We are SO grateful to have him home & loving every single second we have with him! ~ Rachel
My sweet Braylee Ann getting her baby brother to sleep. She is seriously thee most Amazing & comforting sister! We are so blessed to have her in our Family!!

Friday, March 22, 2013

Extubate and Home

Ryker once again showed everyone just how amazing he is and was able to be extubated on Tuesday. The photo below is after extubation. 

Ryker wasted no time getting home after extubation and was on his way out the doors Thursday. Please keep our amazing and inspirational miracle in your prayers. 

Saturday, March 16, 2013


Today has been a little rough for sweet Ryker. We have hoped for & worked towards extubation all day, but sadly his fluid balance isn't quite what we would like it to be & his lungs are still too wet for a safe extubation. This time around its a little more scary to extubate. In the past we would 
extubate, do LOTS of chest PT (a form of Physical therapy for his lungs to help break up fluid) & hope & pray he could do it & if by chance he couldn't we would just reintubate. But this time around reintubating is not a
simple task! Intubating him in the first place was a terrifying moment that we were afraid we would loose him & I am not willing to take that risk again. So as of now we are upping his sedation to keep him comfortable & upping his diuretics in hopes of drying out his lungs enough to get him extubated by morning. Please keep my sweet boy in your thoughts & prayers! ~ Rachel

Such a beautiful boy! 

Thursday, March 14, 2013


Ryker ended up having a echo and a cath to balloon his pulmonary veins today. He handled it all like the amazing little boy he is and we are praying for a quick recovery. The photo below was taken just minutes before he went in for the cath.

Tuesday, March 12, 2013

Admitted back to CICU

Our sweet Ryker went in for a check up today and ended up getting admitted. I do not have details but will let you know when I do. Please keep him and his family in your prayers. Thank you ~ Tisha

Rykers very first real car ride (not by Ambulance) I think he likes the view! :)

Birthday Boy - Photos

 Icing Smiles is the amazing company that made and donated Ryker's amazing cake! 

Wednesday, March 6, 2013

Update 3/5/13

Today we have been home for exactly TWO WEEKS!!! This last week has had a few more ups & downs for our little Ryker than his first week home, but nothing that couldn't be fixed. He gave us a good scare last Thursday night, where his respiratory rate shot up to the 90's & he was a little more blue than we like him to be, but by Friday night he was back to his baseline & by Sunday all his beautiful smiles & bright eyes were back to the way they are suppose to be! During these few days we did some labs & cultures off his broviac line just to be sure that nothing else that we couldn't see wasn't going on & thanks be to God, everything came back perfectly normal, if not a little better than normal! :) Other than that we have had such a great time being able to be all together as a Family under the same roof (without that roof being the hospital) & we are soaking up every single second! OH & the plan was for Ryker to have a follow up Cardio appointment with our wonderful Dr. Marx today at Boston, but because he is doing so wonderfully, we decided to postpone it a week! Yay Ryker! Now in two days we will be celebrating our little Man's first Birthday!!! So happy we will be all together at home for such a HUGE milestone! :) ~ Rachel

*** The amazing photos above taken by the amazing MyndiB Photography - Thank you so much Myndi***