Tuesday, September 11, 2012

Update on Drug Shortage

I did a little detective work come yesterday morning. Detective- we can now add that to my list of duties as Wyatt's Mom! I began calling local hospitals and talking with their pharmacists, explaining our situation, inquiring about their current IV Valium supply and their ability to order more from their suppliers. What can I say? I'm a Mom on a mission...a stubborn, desperate Mommy. Everything within me is telling me to keep pushing on regarding this situation, and so that's what I'll do. Together with hospice, we were able to secure an additional 2 week supply of IV Valium, coupled with what we have now gives us 3 weeks worth of scheduled doses. It bought us time to breath...and work to find more.

Or, should we have to think of alternate plans. I may be desperate and stubborn, but I'm not completely unrealistic. However, for now, should the need arise I'll continue calling pharmacies every week looking for a supply, happily, if it gets my sweet boy what he needs. Love this kid! 

Friends and family- thank you for the kind words and prayers. I do hope you know they're always appreciated. I've told Wyatt about his "fan club" from around the world. He knows he has a lot of friends praying and wishing him well!

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Friday, September 7, 2012

Drug Shortage

For some time now there has been a nation wide drug shortage of many, many vital medications. It affected Wyatt when it first began, by not giving us options to treat our son's medical issues. But we made do with what was available at that time. Now, the shortage issue has resurfaced again, the IV Valium that Wyatt heavily relies on for multiple purposes...seizures, pain, muscle spasms, movement disorder, hallucinations, extreme anxiety and agitation to name a few, is once again back ordered through our pharmacies. As it is now, we have over a weeks supply, but we use it scheduled every 3hrs with additional doses as needed. He needs this medication, he reacts negatively to the other similar types available and therefore can not use them. And with intestinal failure, he requires the IV form of medications. I'm worried and scared for him. I'm here asking again for prayers. This time, friends, please pray for the doctors who will be brainstorming and trying to come up with options for our boy. Prayers of wisdom for them and peace for us would be very greatly appreciated at this time. Thank you!
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Wednesday, September 5, 2012

September 2012

It's hard to believe we're coming up on a year since Wyatt became so very sick. A year.  

As the girls started school last week I began to feel so many emotions thinking back to past years. Wyatt loved school. Just last year he and I sat on the front porch waiting for the school bus, his IV pole beside him as he would pace in circles around it. Laughing, smiling, walking, dancing, wrapping his IV lines round and round the pole. 

This year he lay sleeping on the pull out bed from the couch, the hum of the multiple running respiratory machines in the background as the girls got ready for their first days of school. Both of them stretching over him to give gentle hugs, being careful not to disturb him before they left for the day. I was looking forward to the start of this school year, specifically the routine, the schedule. I think it's good for us all right now. As the school bus was pulling up to our home at the end of the day Wyatt was just waking up. The girls wasted no time jumping into the bed with him and telling us about their day. Maggie likes being in 5th grade, having a locker and a class schedule this year. Jilly was excited to begin 1st grade, I know she'll have a great year. Though she had a concern the second day of school as she told me during dinner "I already know everything they're teaching me. I think I'm too smart for 1st grade!" 

Wyatt continues to lead us down this winding road, with countless hills and valleys. My emotions can't keep up. It's overwhelming, but I'm so thankful for it. For him. For each and every exhausting day.

It appears as if the respiratory "junk" is trying to settle in once again. We've been doing our best to calm it down but am not sure how long our efforts will prevail in this case. He started with a little confusion last week, memory loss, which eventually lead to the start of hallucinations again. And the smell of bacteria is increasing. Each time his body begins to "brew," we see the cycle now. We haven't started antibiotics just yet. Somehow, it's as if his body flips a switch, one day he can look very sick and we're all concerned. And the next day his vitals stabilize and he returns to "okay." It's all very confusing! In a way I feel like the Mom who cried wolf some days...though our hospice team has witnessed and watched in confusion and amazement along with us. So, I'm thankful for their eyes on him too, as I know I would second guess myself and feel slightly crazy as he teeters back and forth like he has been, otherwise.

He's fought so hard this last year, so very hard. Never would we have thought we'd be here, in September 2012 loving, cherishing and still holding our sweet boy. He's surpassed the time lines and expectations multiple times now. It's clear this journey isn't just in our hands. The Glory goes to God.

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