Today he was calm, content, and only had short bouts of pain and crying. Hooray!
The doctor increased his valium by .5 ml’s and this seemed to do the trick. Part of me is scared of giving him these heavy duty medications – in his almost 7 years he’s barely taken any meds, and none this strong – but keeping him comfortable is priority.
I believe prayers are making a huge difference for Nathan. I know people all over the world are praying and I can see how this energy benefits him. We are so grateful, it’s making all of the difference in the world to his level of comfort.
A few people have asked – why is all this happening?
About a year ago, Nathan’s orthopedic doctor took X-rays and noticed his hips were more than 50% out of the socket. He recommended surgery, because if we dont’ do surgery the hips would just come out all the way and eventually would cause him tremendous discomfort.
I am not a big proponent of surgical interventions, so I decided to wait and see. After a couple of months we noticed that Nathan’s hips were affecting his quality of life. His legs were scissoring (crossing) so much that he couldn’t walk in his pony walker any more. This was one of Nathan’s greatest source of joy! I can’t tell you how many times we took this boy to the store or the mall, and put him in the walker, and off he’d go. As he got worse, he tolerated it less and less, until he wouldn’t tolerate it at all. It was also getting harder to open his legs to change his diaper, and to put his legs around my waist which is how I’ve always carried him. So finally we decided late last year it was time to move forward with the surgery. He had bilateral hip osteotomies, as well as hamstring and adductor lengthenings.
A few people have asked – given that he almost died – do you regret it? My answer is no. I’m trying hard to keep my eye on the prize – more freedom and a better quality of life for Nathan. We just have to get through the next 5 weeks.
One of my biggest concerns right now is that Nathan is refusing to eat or drink orally. He is being fed 100% through the G-tube right now. Whenever we get close to him with food or water he closes his mouth and turns his head away. I have a feeling that this is an emotional reaction to what happened to him. He is protesting by going on a hunger strike. Thank God we have direct access to his tummy.
Which allows me to segway into the next topic. Remember all the issues we had last fall with the G-tube? They are all gone now. He’s tolerating 280 ML’s of food in 1 hour. By the end of the last fall, the best we got was 170 ml’s in 2 hours! So this is great! We are giving him a formula that Pam, Makenzie’s mom, gave us:
- Neocate Formula
- Olive Oil
I also add my own flair to it, including prunes, probiotics, Vitamin C, and a few other powders. I’m particularly happy that Nathan is getting such excellent nutrition at a time when he needs it the most as his body is healing.
But I do wish we could get him to eat a little bit by mouth. Today he accepted a couple of bites of chocolate, so that’s a step in the right direction.
Which brings me to my family topic. The emotional trauma of this whole ordeal. I believe that much of what’s going on with Nathan now has to do with emotional pain. Why did this happen to me? I fell asleep and woke up with all sorts of pain! I’ve been doing reiki on him and trying to tune in with his emotions. One of the feelings I got was that he is scared to sleep. He’s afraid that he’ll wake up again in pain like the one he had. And sure enough, he had 2 days where he hardly slept, maybe 4 hours total each night.
We are giving Aconitum Napellum, a homeopathic remedy, to try to get him past the shock. I feel it’s helping, every day he seems a little more present in his body. Every day we seem to get a little bit more of the glimmer back in his eyes. I’m also giving him a few flower essenses, Traumeel drops, Arnica, and rubbing lavender on him to calm him down.
I hope to get back to blogging often.