Some Much Needed Good News

This post will probably go down in history as my most favorite one to share since the start of this blog. Thank you, Matt for taking Jack to his appointment and for relaying the information to me so quickly!

Jack had his cardiology appointment today which consists of an EKG, ECHO and clinic appointment with the always awesome Dr. Hersch and Michelle Cash. Some of you may know that a couple of months ago, Jack was taken off of Sildenafil, his pulmonary hypertension medication, in hopes that when he is rechecked the pressure in his pulmonary vessels will be lower and they will be responding appropriately to stimuli.

So, this appointment starts off like any other at Children’s Hospital. A wait, check in with insurance, wait, and finally meet the nurse and get weighed and measured. This is always an anxious point in the appointment for me since Jack has always been behind on his weight gain and has a surgery coming up. The bigger he is, the better he will do; so Matt and I have been religious with getting in his 1400 calorie a day requirement. We use calorie counters and food journals and have been recording ALL his food EVERYDAY since November of last year. Daunting.

But all this effort has finally paid off yet again in another big jump in weight and height. Jack is now a whopping 84 centimeters tall and 11.08 kilograms. For the non-science folks (sorry, it’s a bad habit to break), this is 33 inches and 24 pounds 6 ounces. This will bring Jack to 25%tile for both weight and height for his age! A wonderful improvement from the 13%tile that we have been idling at for almost a year now. I was so happy for him and of him. I immediately texted my mom with all capital letters.

After the weigh in was a couple of tests to view his heart and how it was functioning. Jack was asleep to ensure that they received ‘non wiggling’ images. Normally, this is a smooth process and he will come out of this ‘twilight’ anesthesia with a little wobbly and goofy demeanor but overall a lovable little boy. Since this was not the case today, I will skip the theatrics and drama and let you assume your own events. That might be better for everyone. But over the cries, Dr. Hersch did tell Matt the most wonderful news since Jack has been home. Jack is no longer hypertensive! Though he would like to continue the clinic appointments every 6 months to be safe and ensure his prognosis, he sees no sign of Jack having pulmonary hypertension. Jack is off Sildenafil for good and his heart is functioning normally. This is an amazing relief since PH is the number one reason why these kiddos would fail.

I am so proud of this little boy! He had all the odds stacked against him and he continues to thrive and succeed. He is a true motivator and my hero.

So, we are going to go into his hip surgery with momentum and he’s going to come out fighting, just like he always does.

For those of you who don’t know, Jack will be going into another surgery on October 1 to rebuild his left hip socket. This will result in a full spica cast for 3 months and 2 subsequent surgeries. He will then move right into a mehta cast for an undetermined amount of time. This will be used to straighten his back from scoliosis. He will enter flu restriction a little early this year and will be out into civilization again in the spring like always. He should be cast free by then. If you want to visit Jack in the hospital before Children’s Hospital flu season visitation restrictions, Matt and I are requiring that  you have your flu shot. Though this is a little earlier than what we asked in previous years, he is going to be a little more compromised and we want to take every precaution possible.

Thank you all for your support!

  
Baseball Jack
bowl hat Jack

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2 thoughts on “Some Much Needed Good News

  1. YAY Jack! I have my flu shot scheduled for Oct. 24.
    Katielou, You said it well when you mention Jack as your “hero”
    love all of you!!!

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