April 18, 2007
April 18, 2007 | Updates
Sorry this update is late. This week did prove to be a little crazy and Monday and Tuesday have been catch up days.
Samuel’s neurologist didn’t get back to me until Tuesday. On Monday, I called in the morning and let the secretary know how absolutely ridiculous it was that I still hadn’t heard back from him. She promised me she would get ahold of him. At 4 pm, I called back and told them I knew they closed at 4:30 and I needed to reach him. The same lady said, “I guess I should make this a high priority then?” Man, oh, man and a bleepity, bleep, bleep! If I could have reached through the phone!!! Boy, oh, boy!
So, Tuesday morning, I got back on the phone and this time got the nurse to speak to me. Well, after hearing my plight, she paged our doctor and he got right back to me. He suggested that we put Samuel on topomax. We went through all the hows and whys and then he started listing side effects - red eyes and the inability to sweat. That concerned me a bit, but I figured we could try it. But I did a little more research and other side effects are things like delays in motor control, difficulty concentrating, the feeling of pins and needles in the arms and legs, difficulty finding the right words, weight loss, anxiety, metallic taste in mouth, upper respiratory tract infections, eye abnormalities, and the inability to sweat. Whoa! How can I give that to a kid that can’t communicate with me? What if his hands and feet feel like pins and needles? He can’t tell me. And I am NOT about to mess with his eyes!
In the meantime, I had emailed our rehab doctor (Monday night) and by Tuesday afternoon, she had replied. She suggested we start him back on a 1/4 tablet of tranxene every 6 hours. So, after a lot of thought, that’s what we decided to do. It seemed to be helping quite a bit, but today was a worse day again. The weather seems to affect him and the storm moving in today may have caused the increase in seizures. Anyway, that’s where we are on that problem for now. Hopefully, we can come up with a better solution. But I wasn’t convinced that topamax was the best idea.
I also got the added joy this week of taking Nathan to the instacare one night this week at about 10 pm. He had ulcers on the inside of his throat. I had noticed he hadn’t been eating well for about 10 days, but I assumed it was a stage. Then one night, he just refused to take anything, including his bottle. And I realized something was wrong. So, they gave me stuff to rub on the inside of his throat with a q-tip. Yea, right! I couldn’t get him mouth open far enough to even see his throat. So I gave him sore throat spray and it went away in a few days and now he is a happy little food gobblin again.
But I mention this here to make a quick point. I was thinking to myself that night that the doctor we had that night must be the worst ER doctor ever - rude and totally insensitive. In fact, dealing with him and pacing in that hospital room surrounded by all the machines and hospital smells for an hour nearly caused me to have a panic attack. But the more I thought about it, the more I realized that I have about 3 ER experiences with doctors that ranked right up there with this one. How these people get these jobs, I will never know. I wish someone would explain to them that when people end up seeing them, it is as a last resort and they are our only hope for an answer. So treating us like crap really is not OK.
I also realized how incredibly blessed we were to have the ER doctor and staff we did the night of Samuel’s accident in the Logan Regional Hospital. They were so good and kind to us. And that doctor called me every few weeks the entire time we were at Primary Children’s to check on Samuel and see how he was doing. I will always be grateful to him and his genuine concern for us. There are a lot of good doctors out there. I just wish the bad ones could realize just how big of an effect they have on the patients they treat and how much we need them to help us. Well, enough of my soap box… We didn’t get much therapy in this week. Seemed like something came up around each appointment and we had to miss them. I did attend a seminar in Salt Lake and I attended it to learn some new things to try with Samuel. There is much, too much, for me to try and explain here. But I’ll give you bits and pieces over the next few weeks as we try these new things with Samuel. Hopefully, we will see some improvements from them. So, that’s about it for this week. We are excited for the spring weather! It will be nice to be outside often. And we have lots to do to keep us busy this next week. Keep praying…as always…I KNOW it has an effect…a good one! I had a doctor tell me this week that each cell in our body has the capability to communicate to the ends of the universe. (Yes, a doctor told me that. A good one!) That means that when you pray for Samuel, he can feel it. And I know he can!
Thanks again to everyone!
Love,
The Jewkes
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