Update on August Tests

Jack had several tests in the past two weeks. On August 20th, he underwent a second emptying study, in which he is fed his formula and his digestive track is monitored to see how the formula travels through the system, and how quickly. Unfortunately, the study showed just as much reflux as was present in the initial study, and so we face an uphill battle trying to convince the doctors that all signs and symptoms of reflux under normal circumstances (when Jack is not lying flat and is not receiving all of his meal in ten minutes or less) have vanished, and so we would like to start slowly increasing the rate at which he is fed. The benefit of such an increase is that Jack will not have to sit still nearly as often at his daycare, while he is fed, which will help is emerging mobility skills.

Last week, Jack had ear tubes put in to hopefully assist his hearing and also (more importantly) to alleviate the chronic ear infections he’s been having. The procedure went well, by all accounts, and Jack isn’t showing any signs of distress following the surgery.  Additionally, he charmed the pants off of everyone that he met while at the hospital.  He’s become a very social guy.

Dr. Chidekel, Jack’s pulmonologist, took advantage of the fact that Jack was under anesthesia to conduct a broncoscopy, in which a scope was inserted down Jack’s nose, to look into his airway. We saw healthy, pink tissue and minimal interior scar tissue. This was great news, since it tells us that we are not looking at up-sizing the trach (we want to keep the trach small, for a variety of reasons), and it tells us that we and all 20 or so nurses who work with Jack each month have been suctioning properly, not stabbing the airway with suction catheters. Because Jack is now crawling, we have had to pay out of pocket for additional pulse-oximeter probes. We get two per week, and he’s been going through one a day. (The probes cost 25-30$ apiece, so another big thank-you to all those who have helped us financially. What a huge relief to be able to write out a check for these excess supplies when needed, rather than spending hours on the phone with he insurance company!) When we brought this problem to Dr. Chidekel, he surprised us with some fantastic news… Jack does not need to be continuously monitored by the pulse-ox!  We can now begin monitoring Jack’s O2 levels periodically. The dreaded Beep-beep-beep BEEP BEEP that accompanies Jack when he stands, when he crawls, when he laughs hard or cries (in addition to when his 02 levels are low), will finally be out of our lives for most of the day, save when he’s sleeping or when we are not monitoring him directly. It took a good number of emails, but I think everyone is now on the same page with that.

The second big news of the day related to an ABR test that was done to thoroughly examine Jack’s ability to hear.  We learned that the left side (which was not impacted by the tumor) is hearing perfectly well.  The right side, however, is fully deaf.  Though the eardrum and cochlea are functioning properly, no signal reaches the brain stem.  This is consistent with what Dr. Piatt reported to us after Jack’s surgery- that the vestibular-cochlear nerve was cut during surgery.  So, we now have our official diagnosis of right-side deafness, which will help us to get Jack the proper supports in school, etc.  For that I am glad.  

A week from today we will be taking Jack for a visit with the plastic surgeon at Nemours to discuss Jack’s facial paralysis, and to determine if there are any cosmetic options which may help Jack have a more symmetrical smile.  However, I have been noticing a lot more mobility around Jack’s right cheek and mouth, and I feel that he is doing some rewiring on his own, and may not need much help from surgeons on that one.  We’ll see what they say!  

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6 thoughts on “Update on August Tests

  1. Sonya Wulff

    Thank you for the update. I keep you guys in my heart always…your full-time, 24-7, job as awe-inspiring parents humbles me so! Go, go, go, Jack, you completely loveable boy! xo, Sonya

  2. Mary Beth Applegate

    It has been so heart-wrenching to follow Jack’s journey from the beginning. Now each post shows more little miracles as Jack’s strength and perseverance move him forward. He is so fortunate to have such an amazing family and doctors to support him. I picture you as the quiet, sweet little girl in my computer lab — little did I know what challenges you would face and what great fortitude would carry you through. Jack and Sam are so fortunate to have you and John for parents!

  3. Sue Foster

    What an encouraging update! It is so wonderful to hear about your journey. All good wishes to you and your boys!

  4. lrjm

    That is an aw-what-a-cutie picture if I ever saw one. All the news sounds great! Jack is flourishing with all the love and support. Best to you all. We need a play date soon.

  5. Ruth Gaffey

    Jack is AWESOME – he is clearly cut from the same cloth as his parents and brother Sam.
    He is very lucky to have such incredible support and love… And We are so lucky to have him!
    Missing you guys every day.
    X mom/nana
    Ps Sam – keep on truckin buddy x

  6. Paula Kwains

    Meghann has been giving me periodic updates. Sounds like Jack is surprising everyone, the little “charmer”!! Love to all! Meghann’s Mom xoxo

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