Lots of Visitors & Almost to the Glenn!

Finding my fingers!

Pulling out my nasal cannula- it makes me crazy! 

Cael & Uncle Tristan!

Uncle, Aunt, & Baby!

Uncle Tristan and Aunt Cassie helping with Caelin's bath!

Caelin learning how to play Euchre!

Reunited and it feels so good!

Kisses from Aunt Cassie!

Happy boy playing with his new Kick & Play Piano.

Meeting Grantie Wanda and Grantie Sue! 

*Pout*

Since last week, not much has changed. He remains on all of the same medications, except they restarted the Amlodipine because his pressures were trending higher while he was maxed out on Nitroprusside (IV med). The Colace finally kicked in, also, making his bowel movements much more comfortable and his attitude much happier! His current weight is 4.898 kilograms! He will definitely be to 5kgs next week as long as he continues to gain weight! We are trying to keep Caelin healthy, stable and gaining weight to get him to his surgery, which is supposed to take place next week.

He is scheduled to go to the cath lab on Monday, August 6^th, 2012 at 11:00AM. Dr. Chai requested a pre-Glenn cath because Caelin is requiring extra oxygen and is severely hypertensive. He does not want any surprises in the OR during the Glenn and the pre-Glenn cath will help better prepare Dr. Chai for Caelin’s surgery. We are happy with this decision because although the catheterization lab brings risks, the potential benefits outweigh them. Also, they are trying to get Dr. Chai to perform Caelin’s surgery on Tuesday, August 7^th so Cael can come out of the cath on the ventilator and remain intubated through the Glenn instead of having to be intubated then extubated then re-intubated and extubated a couple days later. One side not for the Glenn, Caelin will not remain intubated for very long after he comes out of surgery. With the Glenn anatomy, the new path of blood flow often works against the ventilator, making it more difficult to breathe. This is good news because Caelin HATES the vent.

This morning around 8AM he started desatting into the 60s consistently. As a result, the nurse and respiratory therapist had to put him on 55% oxygen at 2 liters from 45% at 1 liter. With this increase, his saturations are only between 69 and 76 while awake, mostly in the low 70s though. And while he is asleep he has been between 75 and 80. His care plan goal is between 75 and 85 so he is requiring a lot of support to be within the parameters. Because of this sudden change, the doctors have ordered an echocardiogram to look at his heart. They also ordered blood because his hematocrit is 40 and is hemoglobin was 13.9, which is at the lower end of where they want to keep him.

Otherwise, Caelin had a pretty good week last week and weekend. He got to meet Grantie Wanda and Grantie Sue for the very first time, as did Mommy! They brought him, The Little Engine That Could which is a perfect book for him! He has been full of smiles and loves having his Uncle Tristan and Aunt Cassie down here to visit. Mommy and Daddy are loving their company, also. We are spending a lot of quality time together and they are awesome helpers! They love helping take care of Cael and have offered on several occasions to help around the house! Today, they are helping Sean set up his new classroom at his new school, Dixie Hollins High in North St. Petersburg.

Thank you all for praying for Caelin and our family. This week our goals are to keep Caelin healthy and stable (hoping his echo shows his heart function is consistent and has not gotten worse), go down on his oxygen support (because 55% is a little high), and to get him a date and time for surgery next week.

P.S. Caelin now has 29982 views to his blog- almost 30K!!! That is remarkable! :) Thank you for following our son's story.