Raising CDH Awareness... and thankful for modern technology

Today Wyatt and Chloe were guest speakers at our local high school in the child development class.  They enjoyed talking to about 30 high schoolers and both were a riot!  Wyatt kept waving and saying "Hi!" and "Happy New Year!"  Chloe took off her shirt in the middle of it!!  I had an opportunity to talk about three year olds and also had a chance to spread CDH Awareness to a group of people that were just learning about CDH for the first time.  I shared pictures of Wyatt from the early ECMO days to the most recent.  It got me thinking how much progress he has made and what a miracle he really is....  It has come a long way, but it also got me thinking he also has a long way to go.... like walking, standing, and eating.. Yesterday we got a new pulse ox machine.  Last night while Wyatt was sleeping, I was sitting in the rocking chair reading the manual and realized that at two and half years old, he still depends on machines and an army of people to keep him healthy.  I still have a two and half old child who is 32 pounds who can not walk, stand, or eat.... All of this has become my new normal and I really never think about it when someone asks me how he is doing.... Thank goodness Wyatt was born in the 21st century because it's all of this that keeps him healthy....   I am thankful for all the progress he has made and so very proud of him!  He is a glimpse into our daily life....

Here is his crib... we just moved it out of our family room into the "play room" on the first floor since we have night nursing....  You can see his oxygen machine, food pump, and pulse ox. and many blankets to keep him warm.

 Here is his oxygen machine up close... he is currently on 1/2 to 3/4 liters at night.  Tonight he is on 3/4th liter.  The sleep study showed that he destats to the 80's without oxygen.   We have a large "M" tank in our family room and one upstairs in his bedroom.  We have several medium tanks for over night visits and many little tanks that go with him whenever we are out.  Even though you may see Wyatt with out oxygen around town, we ALWAYS have a tank with us along with all the medical supplies and extra feeding tube in case of an emergency.  My car is well stocked along with the diaper bag.  It takes us a long time to pack up, even if we just go to the library for a quick visit.  I try to always stay prepared with him, because if something should happen it would happen with me!! like in Home Depot when his feeding tube was pulled out... balloon and everything.  We raced home as fast as possible and since then, I learned my lesson!

Here is his food pump.  It's an Infinity pump and I love it!  Wyatt currently gets 75ml/hr all night long and about 60 ml bolus during the day time every hour and half using a syringe.  Formula can not sit out for more than four hours so we refill the bag every four hours over a 12 hour sleep period.   We make enough formula for 24 hours during the daytime which is kept in the frig.

Besides the nuses notes, we record all feedings in this journal.  Since many people feed Wyatt during the day, we have a running record here.  His weight every Monday is recorded in this book.  We also record his oxygen saturations when he is off oxygen in the book.

This is his new pulse ox machine.  He is hooked up all night which shows his oxygen saturation and heart rate.  During the day time he is connected during naps.  We recently purchased this finger pulse ox to use during the  daytime when Wyatt is awake and active.  We take it with us every where we go and check his oxygen levels every time we bolus him which is about every hour or hour and half.  We count to twenty and Wyatt is very good about it and learning to count too!!  I took this pic about 10pm and he is currently stating 95 percent on 3/4th liter.  Not very good in my book.... usually it's between 96-98 percent.

Wyatt is always congested in the morning, so every morning he gets the following breathing treatments and also in the evening before bed time-

First- Suction

Second- Flovent- two puffs

Third- Xopenex Neub.

He also gets 5 ml of Prevacid twice a day to help with reflux.

We are very thankful that we have nursing.  Susan, our day nurse four days a week works very intensely on his PT and OT therapy.  She has a routine everyday where Wyatt stands, climbs stairs, crawls, eats, and learns.  We are so thankful for her, because I never met anyone in my life who puts their 100 percent effort every single day and she truly loves Wyatt.  The night nurse is important because Wyatt still has a risk of aspirating at night because of his abnormal vocal cord, he is oxygen dependant, and requires food all night long.  Every hour he is vented using an empty syringe through the night to keep him comfortable.  Here is the chair that the night nurse sits in (she also has freedom to go wherever she likes too!!)  We are lucky to have two excellent, dependable night nurses.  They are hard to come by and I have many stories to share about going through night nurses, but I think we have finally have a GREAT team!!

On the nurses night stand... a venting tube, hand sanitizer, and a pulse ox monitor.. the essentials!

Other things in the room along with a few toys!! Nurses paper work, supplies, etc...

More supplies upstairs in his bedroom!!

and this is what I bought myself today... a green Dell mini... isn't it cute??? I can't wait to get it!

So that's our daily life in a nutshell!!  We are so thankful for modern technology and the help that we have.  Wyatt would not be doing so well without it!  and I am also thankful for God and for his little miracles:)