Our Day

11pm Tyler is finally asleep
1230-100AM Feed Tyler
230-300AM Feed Tyler
430-530AM Feed Tyler
7AM Feed Tyler before he begins his fast
8AM Scott eats, takes a bath, cuts his finger and cries
9AM HIDA Scan in Radioactive Imaging Dept.
915-945 Work on getting an IV in Tyler. Trip to pediatric floor to start an IV going in his hand. His right arm is too scarred and left arm is all bruised from failed attempts in the ER and radioactive dept.
10AM-11AM HIDA scan.

Can you find Tyler? If you click on the image you can actually see the picture of his liver on the screen. The machine picks up 1 picture/second. They record 1 picture/minute.

1115-1200 Waiting & EKG. Tyler with his EKG wires. I am pretty sure the wires weigh more than he does.

1200 Echo & Dr. Coopers (Cardiologist) Appt
1250 Dr. Hahn (Pediatrician) checks out Tyler
This is a picture of Dr. Coopers clan. Anne is Tyler's case manager and my saint. She organizes everything, helps with everything and answers questions or concerns I have. She makes sure Tyler is doing well and even gave scott juice and crackers today while Danny and tyler where in the HIDA scan. What a great nurse. Dr. Cooper is the greatest cardiologist I know. So nice, so knowledgeable and loves his cardiac kids. Nanci does Tyler's echos with Dr. Cooper.

1-145 Heidi eats breakfast and Danny eats lunch...a little R&R. The boys are watching Tool Time. Isn't that a perfect show for Danny? Anyway, I loved the position that Scott found to relax. We love them sooo much. He is such a great kid and was so patient at the hospital waiting for Tyler's test.

200 return for HIDA scan that shows body is still high is radioactive material, Appt to return tomorrow morning for another scan
300-500 Play with Scott & Tyler

5-730 Work
730-830 Dinner, clean up & bedtime for Scott
900 Blog


Hoping Tyler goes to bed soon to start again tomorrrrrrrooooowwwwww....
So people ask how we are doing. We are doing pretty well and realize that Tyler is going to have bumps in the road. You learn with a critical child to go with the flow of things and to never have definite plans or dates for surgeries, coming home or appts. Even though it might not seem like it from our daily log, Tyler is sleeping more in the night which is a great blessing for him, me and Danny. About 3 weeks ago Danny and I were on the brink of not functioning and realized there was no way but up with his sleeping. He still gets up several times a night, but sleeps for 2 hours at a time, which we are very grateful for. My dad took Scott for the day on Monday and I realized you can go on about 1 hour sleep if you don't need to to chase a toddler around all day. It was the most relaxing day I have had since his birth. I missed out on the bonus day in the hospital. Those were the days. I know people with more than two kids are thinking of my two kids and saying to themselves...those were the days when I had some free time. Isn't life and kids great! They haven't gotten back to us from the scan. It looks like he has some type of cysts from the ultrasound and they hope the scan shows needed details. The cardiolgy and endocrinology teams need to get together and figure out if they need to help the heart or liver first. They are going to do any liver surgeries at UCSF since his cardiac team is there. That is a great blessing since they do have some of the best surgeons in the world. Keep you posted tomorrow. Tyler is a tough little guy. Amidst what he goes through he is still smiling. He truly is an example to all and makes me realize that I am blessed and have a lot to smile about. I have a great husband, two great sons who are full of love and help me appreciate the little things in life.