Holding onto hope

We saw the neurosurgeon today and Emily had her shunt reprogrammed again. The ironic thing is that today happened to be the one and only day that she seemed to be feeling great. She was bouncing around and feeling happy and I just didn't know what to think. It is times like that when I start to second guess myself and I thoroughly hate that. And that is when I am so thankful that I keep good notes on Emily's condition on the calendar so I have something concrete to look back on to see how she is really doing. Being a parent can be so hard sometimes when you are constantly second guessing yourself and wondering if you are making the right decisions for your child.

When we got into the doctor's office, I explained to the neurosurgeon's assistant how it just so happened that Emily was having a great day, her first headache free day in a week. I explained about her daily multiple headaches, how they were much more intense and lasted longer than normal, and how Emily's personality was changed. I talked about how she is just overall more irritable and not happy than she was before this last adjustment. Right before the assistant had walked in the room to get her vital signs, Emily had just finished telling me how good she was feeling and how she was feeling a zero on the pain scale chart right then. She was actually pretty talkative to me. Well, from the amount of time it took for the assistant to take Emily's vitals and get that bit of information from me, walk out of the room and consult with the doctor, and then have the doctor walk back in, Emily had suddenly been hit with a headache right there in the office. That amount of time was about 15 minutes. I watched Emily go from sitting there thumbing through a National Geographic magazine to watching her eyebrows kind of draw together and her telling me that she needed to lay down on the table in the room because she was getting a headache. By that time, she told me that her pain was up to a four on the pain scale chart. It was like a snap of the finger. When the doctor walked in I explained what was going on and she took out her little flashlight and shined it in Emily's eyes. (For those of you that aren't aware, the neurosurgeon can see the pressure in your brain by shining the light through your eyes. Interesting, huh?!) Emily was declining pretty quickly.

The doctor and I talked a little bit about Emily's problems and she said that her last adjustment was just overshot and she was going to bring her back down to 150. It is just a little bit of trial and error until we can get it right. We talked about how she tapped her shunt in Dec when the pressure was set at 100 and because of the results of the shunt tap and with the headaches she was having back then, Emily was way overdraining then. That was when we bumped it up to 130 at her first adjustment. Because she had such remarkable improvement in her personality, that told the doctor that we were on the right track, but it still wasn't just right because she was still having positional headaches. That was when the adjustment to 200 took place last week. Unfortunately, Emily's headaches no longer became the easy to handle positional kind anymore. These headaches are killer headaches on an extreme level because they are high pressure headaches. I am so hopeful now that her shunt has been reprogrammed again, maybe Emily can start to lead a normal life.

After we left the office today, we had to head to Ethan's allergy doctor to get his weekly shots. Since we were in Pensacola anyway, I decided to kill two birds with one stone and handle all medical stuff in one day this week with both kids. Well, poor Emily was miserable. I didn't plan on her headache being so bad and there just wasn't anything I could do about it. My mom went with me to P'cola today and I'm glad she did. Emily passed out in her lap at Ethan's doctor's office and I helped Ethan cope with his shots. Ethan has been getting two shots in his arms every single week since last August and he never really complained or had any kind of problems with them until the last month or so. Now he suddenly has developed this anxiety when he gets them and then he tenses up and it hurts worse for him. I even use Emla cream so he can't feel the pain of the needles. I just hate it that he needs these darn shots at all.

Emily's headaches have continued on and off all evening. Just when she thinks that it might be going away and she tries to get up and play a game or take her bath or eat dinner, the headache suddenly returns in full force. She flops back down on the couch with a trash can in front of her in case she needs to throw up. When I was putting her to bed tonight she asked me if I would go ahead and turn on the baby monitor in my room. You see, as sad as it is, we still need to use a baby monitor at times when Emily's headaches are this bad in case she wakes up in the middle of the night vomiting. Who would have thought that I would still be using my baby monitor when my kids were 7 1/2 years old?!?! Hmmm, maybe I should invest in a newer model. It certainly doesn't look like I'll be getting rid of it anytime soon. :(