Sometimes it feels like my baby has been sick forever. I’m sure to those of you reading my blog posts and Facebook updates it seems that way. In reality, for the most part, he has been a healthy happy little boy with a few bumps in the road that far from overshadow the beautiful light that shines from him.

He is loving and strong and imaginative and the best thing that ever happened to me. For the past few weeks he also happens to be a Dragon, complete with claws (not hands, thank you very much) and spiky things. I LOVE that even during what I hope will be the hardest thing he (we) ever have to deal with, he is using his imagination to keep his spirit strong. If you can’t tell, I think he is amazing and the strongest force of energy that I have ever seen.

Yesterday, a dear friend of mine sent me a text message letting me know that he was absolutely shocked to hear about what Bradyn’s been dealing with and that he had no idea that he was even ill. I guess, when things are going well, we just don’t talk about the times when things haven’t been so great. It was a good reminder to me that I needed to send out an update and let everyone know where things stand. For those of you that don’t know the back story, you can start here – with the story of his Epilepsy diagnosis, or here – with the story of his kidney/urinary tract reflux diagnosis, or here – with my New World Order post about the time I was kinda pissed at the Universe.

On to the update for this particular crisis – Surgery was last Thursday the 24th. They preformed a ureteral reimplantation – meaning, they sniped his ureters on both side of his bladder and reattached them in order to get his reflux under control and stop any further kidney damage.

The surgery went great. On Friday he was walking and playing in the playroom and on Sat morning they removed his catheter and said as soon as he pee’d we would be going home. He never did. We spent all afternoon trying, with no success. By 5pm his bladder was full, his tummy was distended and he was in serious pain. They decided it was time to insert a catheter in order to drain his bladder then remove it. The plan was that they would relieve the pressure and then give him another 6-8 hours for his body to begin working on it’s own. It never did. They repeated that process (a very traumatic and painful process) every 6 hours until Sunday afternoon when he began seizing, ( I think from the pain and the stress) at which point we decided that the best thing for him would be to take him home with the catheter in so that he could relax in a familiar environment.

Home worked wonders. I could see the calm come over him almost instantly. He has not had another seizure since we left the hospital. The pain on the other hand was unbearable (for both of us) he would SCREAM for hours and then sleep for a bit and then SCREAM for hours. He had good pain medicine and we were administering as often as possible but it just wouldn’t work long enough. I called the surgeon and he said it was bladder spasms and we were doing everything we could do and that over time the pain would subside. Over the last few days the screaming has transitioned to moaning. He can’t really describe what he’s feeling so we are taking that to mean that the pain is still there but is less intense. At this point he actually gets up and plays and talks between bouts of pain (which was not happening a few days ago) so I feel like things are getting better.

We went to the clinic on Wednesday and again on Friday to repeat the process of removing the catheter and spending the day trying to get him to urinate. We drank water, went and looked at waterfalls, sat in the bathtub, put his feet and hands in warm water, cold water, blew bubbles, took deep breaths… Every trick you can think of to encourage release, we tried but nothing worked.

The next step is back to the OR. He is scheduled for surgery Monday morning – the procedure is going to start with a scope to see if there is something they missed during the initial surgery or if there is some type of blockage that is not allowing him to urinate. If they find something they will fix it. If they don’t find anything they are going to insert a tube through his abdominal wall into his bladder in order to drain his bladder while letting his lower urinary tract rest and heal.

We are working hard to stay in the moment and trust that the Universe has this under control. My main focus has been to find real calm. I’m really good at the fake calm and the smiling through terror but I recently realized that Bradyn can see through that. I need to be calm and confident so that he can feel peace and know that whatever happens next we will be okay.

So that is the intention that I am setting for today. I will be calm and will live in the moment. I will take care of Bradyn and I will not think about what could happen. I will focus on what is happening and help him get through it.

You can find a Bradyn update here.

Category: Epilepsy