Gannon Update: You aren’t going to believe this…

In a surprising turn of events…

Gannon is fine.

No really. After his surgery in search of the missing testicle, the unexpected hernia repairs, the endoscopy, the airway swelling, the unexpected hospital admission, the continued breathing problems, the high fever, the “pneumonia,” Gannon is better than he has ever been.

  • Gannon’s belly isn’t bloated.
  • Gannon hasn’t thrown up.
  • Gannon doesn’t need any miralax or milk of magnesia to have a bowel movement.
  • Gannon doesn’t cry when he poops.
  • Gannon isn’t constipated.
  • Gannon is the best he has ever been especially in combination with the ear tubes. His personality is so warm and kind and bubbly.
  • Gannon has learned how to do kisses, he knows the “uh” of “uh oh” and shouts it whenever he throws something on the floor. Gannon has learned how to click his tongue. He learned how to blow kisses and wave goodbye. This morning he said “Da!” when Craig came in the room. These are all vast improvements.

All of a sudden, I have a healthy, happy, normal, kid. Seriously. All of his symptoms are GONE.

So I’ll be emailing Gannon’s urologist in the morning to find out more information about the location of the hernias, the location of the testicle, and what role that would or could play in the miraculous restoration of his digestive system.

In the meantime, for all you medical nerds, I spent my 3 am “why can’t I sleep” researching through medical journals trying to find some sort of explanation. Here is what I’ve found:

157 articles have been submitted and filed in the ncbi database. They are working to collect data to name a syndrome which is a collection of congenital signs/symptoms. For example there are certain features characteristics that make up Downs syndrome, Turners syndrome etc.

This particular syndrome doesn’t have a name yet but they all have several things in common: male, cryptorchidism (undescended testicles), spigelian hernia (a very rare type of hernia only found in boys) and anal stenosis (which Gannon has been diagnosed and treated for).

So essentially, all these doctors are publishing articles like “hey, I had a patient with this too!” and “here’s everything you need to know about my patient” and “I think this means something and I see a pattern here.” BUT NO ONE HAS NAMED THE SYNDROME YET! It is SO RARE. In most cases (the ones I’ve found) that once the hernia is repaired and the testicle is properly pinned, it is just fine.

I just remember standing over Gannon’s crib at St. Mary’s in Rochester and I asked them for what felt like the millionth time “Are you sure this has nothing to do with his undescended testicles?” Over and over and over again, the answer was that his GI issues couldn’t possibly relate to his GU issues.

Anyway, it all depends on where Gannon’s hernias were and the location of the testicle so we will see what his urologist has to say in the morning. In the meantime, I went WAY down a rabbit hole and dug through some of Gannon’s pictures to see if I can find where his hernias were and how could we have missed them. Here’s what I found:

In just this picture I see three possible hernias – one on the left and two on the right

Anyway so maybe we won’t need Milwaukee. Maybe Gannon is well on his way to a normal life. Oh I so hope that is the case. Who would have thought? I just need to know WHY his symptoms all of a sudden resolved. I’m nervous to cancel Milwaukee until we have proof that this isn’t just a fluke.

In other Gannon news, he LOVES being outside, he is so not afraid of water, he is so close to walking it is painful to watch, his incisions have healed beautifully, he shows more and more spunk with just a hint of mischievousness every day.

21 thoughts on “Gannon Update: You aren’t going to believe this…

  1. Donna says:

    Thank God and praising HIm for Gannon’s recovery.
    Keep on it mom – you may save another child’s life by NOT giving up on your research!
    Love and prayers

  2. Elken Cooper says:

    Yeah on the good news. If you have a chance, see if your hospital has access to UTDOL/up to date online. I think it’s updated twice a year or more. I’ve always found it to be a helpful site in medical research.

  3. Karen says:

    So HAPPY for all of you!!! Thank you for sharing! It makes my day! I would keep the appt. at least for a while, but praying you won’t need it.

  4. Carolyn Sullivan says:

    I never thought about it being a syndrome, but you are right it probably is. My 60+ brother had hernia, anal issues, undescended testicles too but they were more concerned bout his major heart issue. He was one of the first babies an open heart was done on. I remember so little about that time. I know they fixed his anus, and his heart in the first year. But his testicles were not done until he was much older. They didn’t think he would survive!
    Medicine has come a LONG way baby!

  5. Susan the Farm Quilter says:

    Syndromes – the rare ones like your no-name syndrome – are difficult to diagnose, but it could be worth a paper for your gastrointestinal doctor and maybe get a syndrome named after him or Gannon!! I’m so glad his gastro issues seem to be resolved. At least the gastro doc could definitively state that the hernias and testicle caused the problem with his gastro and that resolving them resolved his problems with his gut!!

  6. Helen A says:

    Wow that’s amazing! Has his eating improved as well?

    This has all reversed early enough that his feeding and speech could easily catch back up even within a few months I should think, even without speech or feeding therapy. I’m so happy for all of you.

  7. Elle says:

    Congrats on the major breakthrough!!!!!!! Mom looks as happy as Gannon-well probably happier and much relieved. I admire your tenacity in advocating for your son. I know a RN advocates for our patients but Gannon got a double in a Mom RN! 🙂

    Hugs to you all!

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