Pain Pump By Scott & Robin Neelley Today was one of the hardest days we have had in a very long time, both physically for Hunter and emotionally for all of us. But before I get into that, let me talk about the good stuff. Last week was homecoming week and I posted about the parade on Friday afternoon. On Saturday, Hunter was able to go to the Homecoming dance and all I can say is that he had an amazing time. He was able to dance and had his first official date with Coley and what a beautiful couple they make. I would have voted for them for Homecoming King & Queen, but then again, they are only Freshmen and apparently my vote doesn’t count. Oh well, maybe in 3 more years. I posted a picture of Hunter and Zach as well. As a proud daddy, let me just say, dang those are some good looking boys. (They get that from their mother). Speaking of Robin, I just want to write a little bit about her and her journey through all of this. I don’t even know where to begin. No mom should ever have to watch her baby suffer like this and while this has been hell for our entire family, it’s probably been hardest on her who has dedicated her life and 24/7 care to Hunter. We all do our part, but Robin is the one who gets up in the middle of night numerous times, has been there for all 16 surgeries, stayed night after night at the hospital sleeping by his side and rubbed his back/arms/legs for hours at a time to help with is pain. She has spent countless hours researching this horrible disease and alternative methods of treatment and while our precious son was given only a few months to live back in January, I honestly believe that Hunter is still with us because of prayer and all the things Robin has done to keep him going. There is a reason why the nurses at the hospital gave her the nickname, “mom-cologist”. Robin was with Hunter while he was coughing up blood for the first time, holding his head as he vomited over and over after chemo, and now was there when we had to make yet another very difficult decision. We have been putting off getting a pain pump for lots of reasons. I won’t get into that too much other than to say that the pain pump has symbolized the beginning of the end for us and has been an emotional barrier for a while now. It will certainly help with the pain and Hunter will be able to control it himself versus having to get it orally and we certainly recognize the benefits it will give. There is nothing else we can do other than try and make him as comfortable as possible. Yesterday Hunter was lying in Robin’s arms all curled up in so much pain. Robin stroked his back to try and comfort him waiting for the pain meds to work, but to no avail. Hunter looked up to her with those beautiful big blue eyes and just whispered, “I can’t keep living like this, it’s time for a pain pump”. The one thing that he had resisted the longest and braved so much pain to prevent, but he knew it was time. Robin called hospice today and after a very long day, Hunter now has the pain pump. The nurses just left a few minutes ago and have placed the I.V. into his stomach and now Hunter can control the intake of meds as needed. It’s timed to release every 20 minutes if he needs it, so he won’t have to wait every few hours like before and it should help provide him a more constant stream of pain relief. In fact, he went from a 9 down to a 5 (out of ten) just 45 minutes after the pain pump was inserted, so that was a huge blessing and a much needed one for the end of a very rough day. We don’t know how much time we have left and are preparing for the worst, but certainly praying for the best. Hunter is not going down without a fight and please know he is still fighting like mad to beat this. He’s so brave and we are so proud of him. We will keep you posted in the coming weeks.
Posted on: Sun, 28 Sep 2014 02:37:11 +0000
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