Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!



Friday, November 19, 2010

Busy day, eh?


Isabell had a follow up with our cardiologist today. Just over 2 years ago, she had an echo cardiogram and we found that she had a PFO (Patent Foramen Ovale) and also discovered she had an innocent heart murmur. I was sent home and was told to follow up in a year or two. So today was the day. She was seen by Arizona Pediatric Cardiology's cardiologist Dr. Bryan Sandweiss. William is seen by Dr Erik Ellsworth with the same group and I really like him. Dr. Sandweiss's availability is not that open, so I decided to have Dr. Ellsworth see Isabell. First of all, our appointment was at 12:30PM and we did not get out of there until 3PM and Isabell was an Angel. Tolerated her heart ultrasound so well. She kept saying the doctor was looking at her heart, it was so cute. SO after Dr. Ellsworth got all the images he wanted, we had a sit down chat session. He first told me that her PFO is closed!!But also explained to me that it appeared that she has what is called an Aortic Ring. This condition is hard to explain, but she will be getting a CT scan so we can get images of all her blood vessels in her chest/heart. In most cases a CT scan is able to capture the images needed to asses the abnormality, but in rare cases it does not work and a chest MRI would be ordered and that requires anesthesia. We would like to get our testing results from the CT scan because she dies not have to go under. She will be getting that CT scan in 2-3 months. NOW when we et the results of the scan, and see the severity of the deformality, a surgical repair will be in order. I asked if it would be an open procedure, and Dr. Ellsworth said most likely will not be an open heart surgery because it will be repair on the valves, not the heart itself. Dr. Ellsworth is very concerned about this condition, but we have time for repair without rushing into things. 

I am very nervous for this because I sure hope I have chosen the right cardiologist for Isabell, and William too. I really like Dr. Ellsworth, and as far as I really feel... Ultrasound images don't lie. I know he is perfectly capable of explain to me the findings he has found on the ultrasound images. The surgical procedure itself is performed here at Phoenix Children's Hospital, and that makes me feel at ease that she will be taken care of by the most talented surgical hands that Arizona has to offer. It is hard to just up and change or get second opinions from pediatric cardiologist's, as many are not taking new patients or have a long scheduling wait time. I don't have anything telling me to go seek a second opinion, just find myself HOPING that we are doing the right thing for Isabell. Richie said, geez if its not one kid it's the other! 




Richie got in last night about 8PM and was able to spend alot of quality time with his boy while Isabell and I were in clinic seeing the cardiologist. They even took a nap together while watching TV. Then after Isabell and I were done, we took her to Lowe's and purchased her playhouse, swing and slide set! She is so excited, and then we went to dinner at one of my favorite mexican food places, Si Sinor in Chandler-they have the best chili rellenos and margaritas! 
My Aunt Tommie came down to my house yesterday and stayed the night so she could help with Isabell and also do some shopping! Then after we were done with dinner she took Isabell with her back to Payson! My mom is going to go get her on Sunday! I am so excited because she gets to play with some cousins, and my brother has been working in Payson and staying with my Aunt Tommie and Uncle Ron and Isabell gets to see Uncle Vell! 

Then Richie and I came back to the hospital to see our BUBBA! Richie had to say goodbye to the little man and scram back to California for a busy weekend of work. He will be back on Wednesday for the Thanksgiving Holiday!  

All is well here in the PICU tonight, William is not really tollerating it when his O2 is weened, so we have just left the low flow oxygen blender at 4LPM @ 40%. I hope tomorrow is a good day, and that he tolerates a decrease. Until then, he is just stealing all of the PICU Pod D's hearts and everyone keeps saying how sweet and cute he is. And how happy and content he is-Until they have to do Deep Suctioning! He is NOT a fan of that. Such a blessing to have my little masterpiece, my little William George Leon.

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