Well, so much has happened since my last post. Nathaniel spent this past Halloween in the hospital. That’s when he was sick and lost weight, so he had an emergency g-tube placed. Then 11/27/13, there we were, back in PICU-seizure. Then 12/27/13….he was originally admitted because of Pneumonia and respiratory distress. A few hours later he had a seizure because of his 103.5 temp. Needless to say, he was intubated and fought the sedation. He had to be restrained even though he was given 2 narcotics. They added a 3rd non-narcotic and that still didn’t work. Eventually he was put on propophal and weened off the others. He was intubated for about 4 days and was eventually moved to a regular floor. He required oxygen and stayed on the regular floor for another 5 days. Every time they tried to take him off oxygen, his O2 level would drop to the low 80’s. So, we spent New Years in the hospital. Luckily, he was released 2 days prior(1/6/13) to his Birthday(1/8/13).

He looks sooooo happy!

So here goes his last wonderful adventure. On 1/22/13, he saw his pediatrician (fever and vomiting) and was supposed to follow up the following morning, but I woke to him choking on his throw up….he was running a fever (103.5) and began seizing 🙁 So, we called for an ambulance and rushed him to the hospital. He was in respiratory distress again and had to be intubated. There we were, PICU again. We’ve been there so much that it’s like a reunion every time we go. His Depakane and Keppra had just been adjusted so instead of adding another med., we are trying the Ketogenic Diet…carb free, kind of like the Atkins. The diet can either reduce the frequency of seizures OR stop them all together. 1 out of 3 have seen results. We could have added another med., but the side effects were far too great for his little body. Now as far as his accomplishments…he still can’t sit up on his own, but when I sit indianstyle, prop him in my lap, hold his hands, and say, “UP! UP! UP!” he’ll wobble himself to stand. He can feed himself little crunchies and will try to use his cup-although most of it ends up on him than his mouth. He does have greater upper body strength, and better control of his head. I know that his many wonderful adventures are part of his delays, but we’re working on getting him back on track. He is such a fighter and so strong that I don’t have any doubt that there isn’t anything he can’t do. As the “wise” 21 year old Matthew Jeffers said to the Baltimore Ravens via e-mail(saw on ESPN):

“The ONLY disability in life….is a bad attitude”—-Matthew Jeffers
Loved it! So true.

I hope all is well out there in wonderful and adventurous world of WHS!!!

 

2 Responses to Nathaniel’s overdue update…

  1. Janet says:

    Sweet Nathaniel’s family,

    Thoughts to you as we read this update. This time of year is just a demand on our kiddo’s. May you stay well and gain strength. Your story is all to familiar….our daughter Sophia is 7yrs. and each season she is getting stronger and the hospital stays have been less! Love the quote by Matthew Jeffers, “the ONLY disability in life, is a bad attitude.” You all are champions in life, stay healthy and hopeful. We are cheering you on!

  2. shirley bidnick says:

    Happy Belated Birthday Nathaniel. You are such a brave little man. Your story is so amazing because your mom has such a good attitude. How is the rest of the family coping? We pray that, the supernatural strength you need will continue to be poured out on all of you.

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