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Powerful Price

This is a private space to update our friends and family on the events of Price's journey. Our original site for posting updates is no longer operational, so we have cre[...] read more

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Fontan Scheduled

March 21st.  This is the day that hopefully changes Price's life for the better.  Hopefully that will be the start of higher oxygen levels in his blood, the start of our little boy feeling stronger and less tired, and the start of the rest of his life.  This will not be an easy road for him, but he is ready to feel better and he knows that his doctors are going to do their best to get him there. 

The next month will be riddled with anxiety for all of us, as we send our little boy back into the OR.  It has been so long since we had to let him go and it will be hard.  It is a familiar feeling, but also totally new, as we are now handing over our walking, talking, sensitive, smart, almost 6 year old.  Luckily, he will be in the hands of the same surgeon who performed his previous 2 heart surgeries.

We have been told to expect to have an average stay of 10-14 days.  If all goes well, he will be in the CICU for 3-4 days and then to the step down unit to finish his recovery.  The biggest challenges and most common thing that keeps post-Fontan kids in the hospital is fluid build up.  He will have chest tubes for drainage and it will be our mission to get him up and moving, eating well and keeping him mentally positive, so that we can get out of there as quick as possible. 

Some people have asked how they can help or if there is anything they can send to Price.  We will probably do a meal calendar to help with the first 2-3 weeks after surgery.  Last time we lived in the hospital it was so wonderful to have home cooked meals delivered to us every couple days, so we would love to have that help again!  As far as Price goes, he will need lots of distractions and things to keep him busy.  I have created a wish list on Amazon with lots of things like Legos, movies, art supplies, travel games, etc.  I have also added Starbucks gift cards on there as well.  Price is a huge fan of their banana bread and breakfast sandwiches.  When allowed, we would love to be able to buy him some yummy treats.  Here is the link to the wish list: https://www.amazon.com/gp/registry/search, then put "Price Shaw" in the search bar.  It is all set up to send the items directly to us.

Miles will continue with his normal routine of going to school on Mon, Tues, Thurs, and Fridays.  While we are in the CICU he will not be able to see Price, but as soon as we get to the step down unit, he will be allowed to come and hang out.  I know that he will be terribly missing his big brother and it will be so wonderful for them to reunite and watch movies together!  While Ryan and I are staying at the hospital, we will be enlisting the Grandparents for help to keep Miles on schedule.  Thanks for everyone who has offered to help!

From this point forward we are in preparation mode.  Price knows he will have surgery, although we haven't talked in depth and will not do so until we get closer.  We will also plan on keeping Miles and Price home for school for a week-2 weeks before surgery in order to prevent an illness from delaying the surgery.  We will quarantine ourselves from public places and try to create a germ free house.  We may also go crazy, but it will be worth it if the surgery can go on as scheduled!  

We gladly welcome all positive energy, prayers, good ju ju sent our way!  Thanks for being our village :)

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