I've neglected the Hulse Home blog for a couple of months, and just reread my last posting prior to writing this one. How quickly things change! In February, we were just coming off of the elating news that Timmy's cardiac condition was so stable that his projected next surgery was far, far down the road. Now we find ourselves far, far down that road already. It is early May and we are in the process of gearing up for Timmy's next open heart surgery.
He looks like a healthy little Super Trooper, all rosy and round. Timmy has been growing steadily, albeit still on tube feedings and resisting oral feeds despite months of occupational therapy. He also still does daily battle with his reflux, and sometimes seems to spit up as much or more than he takes in. Never-the-less, he is now a hefty little 19 lb. tanker, with chubby little arms and legs, and cheeks that look as if he is hiding chestnuts away for winter. Unfortunately, the oxygen levels in his blood have been falling steadily, and the concern is that the band placed on his pulmonary artery to prevent too much backflow through his surgically altered pulmonary valve is also preventing sufficient forward flow to the lungs. His shunt has been effectively making up the difference until lately, and the dropping O2 levels indicate that he is most likely outgrowing the shunt. In any case, it is back to the operating table sometime later this month.
Yesterday Timmy went through a day in the catheterization laboratory at Children's, receiving some pre-surgery procedures including a 3D-ECHOcardiograph and a laproscopic imaging done through a catheter. He spent the day at Children's smiling and interacting happily with everyone he met, flashing his big blue eyes and doing what my niece Brittany refers to as "getting his flirt on." He charmed and disarmed as we made our way through the day, and his behavior helped us to be more relaxed and less worried. When he came back from the cath lab to the recovery area to greet us, he practically seemed to sit up and call out "Hi, Mommy! Hi, Daddy! Look at me!" Someone in the cardiology recovery area had apparently given him a handmade, beautiful fleece blanket, and someone else had given him a brand new teddy bear, so he was apparently getting his flirt on behind the scenes with the nurses, too! He giggled and wiggled and played with his feet when he was supposed to be stretched out resting. He slept the entire drive back to Wenatchee, and it wasn't until later in the night that his discomfort gave rise to whimpering and crying. He was pretty unhappy all night and most of the morning, but is back to his smiley self this afternoon as I write this.
We're now waiting to hear from the cardiac team after they conference on their proposed strategy for his next open heart surgery, which will follow in the weeks to come. We won't find out when it is scheduled for another week or so, depending on the results of the conference. We'll try to spend these next week remembering how well Timothy approaches the challenges of surgery, and hopeful for an outcome that will bring him better health, more oxygen, and even greater joy.
