Hi Honey, I’m [Almost] Home! Or am I?

In the world of emergencies, I recognize that this most recent crisis we’ve endured is not nearly as critical as many of yours. Just the same, when you’re in it, the world has a way of closing in on you. During those times, I find that taking a minimalist approach to the rest of my life is the only tact that reduces my stress and helps me survive. For now, it appears we are temporarily over the hump of our little crisis.

Yes, this blip in blogging has been all about our penoscrotoplasty recovery. And even though we’re not completely done with our recovery — we’re actually entering the second opinion stage — there seems to be a lull, comparatively speaking, so here I am…. blogging. Because it brings me peace to get it off my chest, to share it so others might benefit from my [not-so-good, this time] experience and to garner words of wisdom and advice from others who have been here in this wretched position before me.

It seems we’ve been rushing to the surgeon’s office nearly every other day in an effort to fend off potential emergencies such as post-surgery vomiting, multiple infections, strangulated penis, odd rashes, 8-14 hours without urination and the list goes on. The Pediatrician says, “you have to call the urologist.” And, the Pediatric Urology Surgeon says, “this has nothing to do with the surgery”… Ha! Right! Both Brian and Michael continue to suffer moderate pain, skin infections and increased and abnormal swelling — that is, more swelling than there was a week after their surgery. Not normal and DEFINITELY associated with the surgery… but I’m no doctor!

The biggest kicker, however, is that Brian’s surgery has to be redone! It is, as they say, A COMPLETE DO-OVER because the surgeon chose to put only ONE of the 3 stitches he assured me prior to the surgery would be done to hold the skin back. And, apparently, an unavoidable erection ripped out the one stitch he put in. So Brian’s penis was sliced open and the skin fully stripped back for nothing. We have to wait 6 months, until the inflamed skin can tolerate more trauma, and put him through all of this again!!! And, it appears we’ll have to hit up our insurance who is hopefully willing to pay for it again, with another out-of-pocket $300 surgery deductible… all because the surgeon decided one stitch — instead of the 3 he promised — would suffice. He gambled with my son’s well-being and poor Brian lost the bet! I am beyond frustrated.

Caring and concerned friends have recommended their well-respected pediatric urologists to get a 2nd opinion with regards to the past, present and future care of my boys as well as the names of plenty of lawyers. For my sanity, I’ve been advised to put it behind me. LOL. I promise I will absolutely do so… as soon as it is truly behind me! For now, that’s not possible as both of my children still struggle in pain multiple-times-daily with every single diaper change — Brian to the point that we need 2-3 people to hold him down so I can pull back the skin that was supposed to be stitched back at this point, to uncover his stitched up, infected and swollen penis to clean him and apply topical meds 5 times plus per day. Then, I’m reminded three more times per day when I have to give them oral antibiotics — our second go-round — to help fight the infection (not even going to talk about the resulting yeast infection from so many antibiotics). And, finally, I’m reminded twice more daily when I drive by the surgeon’s office on the way to and from the boys’ school when Brian sees the building and starts screaming and crying, “No Mommy! No! No! No!” until we’re out of view of the building and he’s confident he doesn’t have to go back there…. EVER AGAIN! All this knowing we’ll barely get over this trauma when we’ll have to do it all over again with Brian in April. Poor Brian is shell shocked. Talk about pain and suffering! Besides the yelling, crying, fighting, screaming and being held down and restricted with every diaper change. It hurts him to stand. It hurts him to sit. The poor kid has been in pain for over a month now. And just when he gets sort of comfortable, it’s time to change his diaper again. It kills me to see him in such pain and to be the one that inflicts such emotional terror on him so many times a day.

And through it all, my dear and beautiful children are so loving toward me and toward every one else despite their pain and these difficulties. Only the Sarge, the Old Soul and I really understand why their usually pleasant demeanor and extraordinary tolerance is currently a bit short-fused. In spite of all this, once the diaper is back on, Brian hugs me, holding me tightly around my neck and asks me through his tears and through mine, “are you all right, Mama?” It breaks my heart. And, it’s not nearly over.

I’m still waiting for the recovery to come to an end before I write their recovery story in all it’s gruesome detail. I do not know the end of the story yet. And it’s already been a long hard road…. much much longer and much much harder for my beautiful little men than for me. Sadly, I find my usual life tenet, “this too shall pass” is not helping me much these days… because it will be some time before it all passes and I’m not one to live so far in the future (April plus recovery time is a long way off in my world). As such, I hold on for dear life to my Finding Nemo mantra, “Just keep swimming. Just keep swimming. Just keep swimming swimming swimming.”

Getting back to the hump: We’ve missed 4 weeks of school so far but we’ve managed to string 4 school days together in a row with only one visit to the surgeon’s office. That’s progress. So, until further notice, I guess you’ll find me treading these stormy waters with my chin slowly creeping higher and higher above the water line… hopefully!

My deepest gratitude to all of you for the kind words and prayers. I know that many of you and your children have endured much greater hardship and pain… I cannot even begin to imagine it. Any pain our children suffer is insufferable for us moms. And, I pray that such pain and suffering is behind us all. I truly appreciate your support.

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Down syndrome, penoscrotoplasty, recovery. Bookmark the permalink.

6 Responses to Hi Honey, I’m [Almost] Home! Or am I?

  1. starrlife says:

    Oh Maggie- I feel like jumping in my car and coming to help! That sounds so overwhelming, more so possibly because it was not expected to be so difficult- no battening down of the hatches until things went to hell. Truly, what can I do? I feel so bad for those boys and for you and your family. I can just visualize that scene of Brian's consoling you- my daughter is like that too- breaks my heart.There's no point in comparing your troubles to others since it is all bad when you are in pain! I could spit nails at that goldarn urologist- how callous can you get! Second opinion and lawyer for sure- after things settle down. Hugs, prayers, whatever it takes…

  2. heidivee says:

    Maggie, I am just heartbroken. You were worried about recovery, infections, etc…before the surgery. Who would have thought you would have to go through this? It is just not right. I would be so angry. Love that your sweet boy is consoling you…what angels those kids are. You are in my thoughts and prayers…I wish I could do more. I can not imagine your life right now. I am just so sorry. Love, hugs and prayers to all of you.

  3. Tara says:

    I have no words…just prayers and I am offering them up for all of you.

  4. Cinda says:

    If all the moms in the world could surround you with love and care we would do so. My own mom once told me that sometimes life is so unbearably hard that "one day at a time" doesn't cut it. She said, "One minute at a time." I think you are there. Take care and feel all the mom (and dad) love coming your way.

  5. Michelle says:

    I'm so sorry this has been such an awful experience and recovery process 😦

  6. tiffany says:

    "Just… keep…swimming…" What a GREAT mantra. Accept these best wishes from a stranger who admires your blog and your attitude. I am emotionally wrecked when one of my little kids gets stung by a bee, for crying out loud! I know that as a mother, you feel like the lucky one, but your children are very lucky to have you!

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