Kidney Issues -Part 2/Update

For part one- please read Kidney Issues.

 

My son was scheduled for his procedure today which the surgeon hoped to get a better view of what was going on with the ureters and drainage problems.

We arrived first thing and went through the pre-op steps. I went with my son into the OR room and chatted away as he tried “to blow up the balloon with the mask” (code for the anesthesia induction). We expected the procedure to take 60-80 minutes. The plan was to insert the catheter, then go in with a scope to visualize the interior, (bladder, ureters) then inject dye in the ureters to see what they could; with the possibility of putting in 1-2 stents to try to open and drain the ureters.

The procedure ended sooner than I expected. (It could be because I passed the time chatting with my high school English teacher who was in the waiting area as well!)

Our surgeon was somber when we spoke. Jacob’s right ureter was so closed up at the bladder that he could not even inject the dye to see it. His bladder was shockingly distended- like a deflated balloon- and adult sized! He suspects that Jacob never fully recovered bladder function from the initial bladder failure when he was 1; and that since then the retention and failure to contract has worsened the organ. He thinks we will need further surgeries, reimplantations quite possibly, the prospect of a suprapubic catheter drain; and the confirmation that I will most likely need to start catheterizing my son again. There is still the possibility of a nephrectomy (removal) of the right kidney as well.  If we are facing any of this, there will likely be stints of time with a catheter post any surgery- and it would mean Jacob would be home recuperating- not attending school (which also impacts my ability to work my ‘outside the home’ job).

I am still reeling from all this. I have wept. I am angry. I am sad. I am short of breath and devastated. I am mourning for my son; for his health. This is not exactly life- threatening I realize, but it greatly impacts his future, his quality of life, what he can do. The burden of his care is made heavier by these added complexities and needs. What kind of adult life will he have with all these issues? I am so sad thinking about it. 

We will be having another procedure in the next few weeks for a “urodynamic study” to evaluate the bladder functioning. We may likely be heading down to Boston’s Children’s Hospital again for a second opinion/consultation. Then we will gauge the next step.

He is now busy coloring and playing and no worse for wear. He is lucky that he does not have the burden of foresight to comprehend the rough road ahead of us. (and yes, I WILL pull it together after I finish grieving- and trudge on- because there is no other option.)

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8 Responses to Kidney Issues -Part 2/Update

  1. caroline December 8, 2014 at 8:21 pm #

    Jacob’s photo is an incredible example of you Jenny. Any boy facing those issues who can sport a mustache and smile means his mom is raising him to face life smack on. I am sad for your stress and am sending you unconditional love!

  2. Jo-Ann December 8, 2014 at 8:38 pm #

    Oh Jenny. My thoughts are with you and your boys. I am so sorry to read this news.

    Sending love, light, and good things your way.

  3. Heather December 8, 2014 at 10:11 pm #

    Goodness, that is so much to bear for a little guy. Thinking of you and your boys; and be sure to take care of yourself.

  4. Selena Bluntzer December 9, 2014 at 12:35 am #

    Oh, Jenny, I am so sorry.

  5. Lindsey December 9, 2014 at 2:24 am #

    Oh Jenny honey, I am so sorry. I love you tons and am sending virtual hugs and shoulders to lean on should you want them. You are an incredibly strong woman raising equally strong boys. I’m proud to know you, you inspire us all.

  6. Kathryn @ Mamacado December 9, 2014 at 5:58 pm #

    Know you have lots of people praying for you guys!

  7. Brynn December 10, 2014 at 11:38 pm #

    I’m deeply sad to read this. But praying, PRAYING, that the second opinion brings some better options and more positive results. Big, big hugs to you, Jenny.

  8. Karen December 13, 2014 at 5:06 pm #

    So sorry to hear this, Jenny. With your thoughtful guidance, empathy, and willingness to access resources, he is in excellent hands. This is not true for every child with health challenges! You are an inspiration and I bet he is and will only continue to be, too. (What a sweet picture, btw!) Wishing the very best for all of you!!!

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