Holding Steady

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First off, thank you for your patience since our last entry here: I know it’s been a while and you’re all very concerned about Bryce, and wondering how he’s doing. The good news (if there can be any in this whole situation) is that Kyle and Jenna have not seen any major changes in Bryce since the last time I wrote: He has been holding steady these last few weeks.

His medications are helping to control his nerve pain and he seems more content. Some days are better than others for him, of course, and it’s really hard to see him in those moments of discomfort/pain. I don’t know how Jenna and Kyle are doing it, but they are truly amazing parents. Please keep them in your prayers, too — the physical and especially emotional strength they’re gathering to get through each day is unbelievable.

My family and I got to spend some quality time with him (and Jenna, Kyle and Grandma Sue) the first weekend in February as they were en route to and from St. Cloud for Uncle Kole and Aunt Kristen’s wedding. They arrived Thursday night, the 6th, and Bryce got to hang out with cousins Maddy and Elizabeth, which is always so special. I especially loved getting to hold my Godson for long stretches — I haven’t been able to do that since shortly after his diagnosis. I must have kissed his fuzzy blonde head and soft cheeks a thousand times over the three days I saw him.

I know all of his Heckendorf and Kutz family enjoyed their time with him in St. Cloud, too. They celebrated Kole and Kristen’s marriage on Saturday, February 8th, and Bryce was their handsome ring-bearer (he couldn’t have been any cuter in his little brown suit — be sure to check out the photo area here to catch a glimpse).

Kyle, Jenna, and Bryce then spent some time at home alone in Dodgeville, and then with Grandpa Bart and Grandma Wendy. They’ve been at the farm for a few days now, staying off the roads and avoiding the crummy weather.  Jenna sent me this update earlier this evening about what they’ve been discussing about Bryce’s care:

We have been consulting with doctors on whether or not to proceed with some of the surgeries that were recommended by the team in Pittsburgh. We have one more consultation on the 26th and after that we will make our final decision. The procedures involve tightening Bryce’s “loose” epiglottis, which will allow for easier breathing, and having a nissen done. The purpose of the nissen is to prevent reflux and aspiration. This is more serious surgery than we originally thought, our stay would be four to five days in the hospital.

You may be wondering why we may not consider going through with the procedures. Quality vs. quantity of life for Bryce is our main focus and it will be the deciding factor on everything from here on out.

Whether or not we decide to do these two procedures, we will for sure be replacing Bryce’s current G-tube button with a similar one that has a “lock” system to it. Everything in terms of feeding will remain the same.

Other things coming up:

  • Kira at KJB Photography will be coming to our house this week to take photos
  • Regular physical therapy
  • Consult with a doctor at the UW Children’s Hospital on the 26th
  • Meeting with a home health representative about a stander/seat for Bryce for when he gets closer to 12 months
  • “The Sky Is Blue Benefit” on Saturday, March 1st.

Thank you again for checking back here regularly, and for keeping Bryce, Kyle and Jenna close to your hearts. We hope to see many of you at the benefit in Lancaster next weekend! –Auntie Jamie

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One thought on “Holding Steady

    Tammy Kuenster said:
    February 22, 2014 at 4:12 pm

    Thank up for the update. What a handsome boy in his brown suit! Looking forward to seeing everyone on March 1st!

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