Another late update from your host. Steele's on a good track and we are getting ready for the holiday treat of full time family care. As an educator, I did not realize how important it is to drop your children at school and have a few hours to take care of yourself. My New Year's Resolution is to NOT lock up my 5 year old daugher in a closet and throw away the key. Is that a good start? Please let me know.
I love Ryleigh more than ever at this point, she has shown resiliance, compassion, and the will to fight for what she wants. For those of you who are not familar with Ryleigh, she is Steele's Big Sister. I"ll admit it has been extremely difficult to put her into the schedule like we have. I certainly dont blame her for the behaviors at this point, but it sure is challenging as a parent to remain calm and collected. Luckily, we have a big family with lots of children who have a longer history than our current situation. Thank you all for your navigation and puzzle soliving skills, I am truly grateful.
A break from the "Tubes"
Mr. Steele had his second clinic appointment yesterday which included a blood lab draw. I will be honest, these lab appointments drive my stress levels through the roof due to his fragile vascular system. Steele has very small veins that look like a corkscrew. To get blood draws is very difficult using the look and stick methods. The best way for him to get a good draw is to use Ultrasound. I am fascinated with this technology. I have explained before that it looks like watching the weather channel for storm depth and cloud structures. A certified "Vascular Access Nurse" or VAN has to be the one sticking Steele during these arduous sessions. The equipment includes a sophisticated probe that touches a region of your arm, leg, or hand and bounces back a black and white 3D image of the veins, fat tissue, and muscle structures on a high resolution monitor.
What you are looking for is the dark areas that almost look like the orange spot on Jupiter, but not in color. The VAN is looking for the darkest hole with as little grey as possible, which means it is a healthy vein. Mark it with a sharpie and insert needle to begin draw. This method works the best for Steele, but it still causes my forehead to crinkle every time you hear his screams. We got through it after an hour of finding the "Secret Vein" and moved on to the clinic for his weekly pediatric cardiology exam. The exam went well, his weight chart is growing into a vertical line again, so he may go down on his caloric intake next week, but for now keep everything including medications on "Auto Pilot".
We had a wonderful time hanging out with our newly found heart family, Camilo and Hallie Colorado. They are so kind to introduce themselves and welcome our family into their home. I am blown away how we find each other in such extreme circumstances with everything that is running around out here in the world. My outlook on how delicate and strong our lives are has begun to unfold in so many ways.
Until next time friends, it's beginning to look a lot like Christmas!
No comments:
Post a Comment