The nurse Christy took Miles to the doctor today for immunization shots that he was behind on because his legs were casted so long. Plus, we had several different issues that we needed to get information about from the doctor about Miles. Christy had a list of things to discuss.
- The seizure medication has been doubled and Miles is still have seizures.
- He's been spitting up his food again, and throwing up at night.
- The blood circulation to his feet are bad causing them to be purple a lot of times.
- Immunization shots
- His weight.
Well, Dr. Wiley thought the throwing up at night was due to the seizures he's having at night. (we already thought that) so he upped his medication some more.
The blood circulation thing is the same answer as always...There's nothing we can do but rub Miles' feet all the time to keep the blood flowing.
Shots taken care of. He didn't like them.
He only weighs 19 pounds. He's so very long. This is a problem.
We didn't think he was sick at all but he has double ear infections. He has not had one day of fever. He does not have any runny nose or anything. I can't believe he's sick! There were no signs!
The throwing up the food again is why I'm disturbed. Dr. Wiley has ordered a swallow test on Miles to see where his food is going when he swallows. The test is not a big deal. It's an easy thing. It's done in Abilene. The thing that's bothering me is that Christy came home talking about how Dr. Wiley thinks a G-Button would really benefit Miles. If he had a button in his stomach it would help with his reflux, help him to gain weight, help with the throwing up and blah blah blah. You can read more about the button at http://www.pediatricsurgeon.com/care/PDF/RMPS_gbutton.pdf
Here's the deal. One of the only things that Miles does normal is eat food. I love it that I can feed him. He enjoys it. If he gets this tube then he will have his liquid food shot right to his stomach where he won't have to eat. His medications will be given to him through his tube. He will have to be hooked up to tubes to eat. He could be hooked up to a pump at night to eat. It's just so dang medical. It just seems like Life Support to me, but as Randy pointed out when I talked to him..so is feeding him already. He can't feed himself. Hey, have any of you ever realized that Miles has never fed himself one thing? That last sentence by itself takes my breath away and makes me feel trapped.
Honestly, from the beginning there were two things that I put my foot down about. 1. I did not want Miles to have seizures. 2. I did not want Miles to have a G-button. As you know #1 came to pass already a month ago. It was out of my control.
Here's what I'm feeling:
- Part of me wants to be a Warrior Woman about this and with everything in me fight from him getting this procedure done. I want to say if anyone tries to talk to me about Miles getting that button that I will punch them in the face. I want to say that I will stand my ground and demand that the Lord fix his problems. I just want to stand firm.
- Another part of me wants to just say "Whatever" in a weak way and just go with the flow. I can't seem to control anything that happens with Miles anyway. I might as well just give up having anything that I limit with him. It doesn't help anything. I just feel like laying down on the floor and letting the cards fall where they may.
- Then another part of me thinks that I all I can do is love Miles, take care of him in whatever way that means best for him. If it means that I need to allow him to have that button then do it. I can have a cheerful attitude and just continue to hope for the best for him.
All three of those things could be agreed on by other people and all three of those things could be frowned on by other people. There's no winning. All three are wrong because they are so far from Miles being totally restored which is what we all desire. All three are right because they are so far from Miles being totally restored which is what we all desire.
I know this is not a sweet post. Well, it's not all sweet. I can assure you.