Long Hard Day

Today was Emily's big test. We headed out the door early this morning and drove in some nasty weather to get to the hospital. We were about 30 minutes into our trip when Emily informed me that her head was starting to hurt. By the time I got to the hospital it was really hurting her. As I was getting Emily checked in for her procedure, I explained to the girl that Emily needed to lay down because she had a shunt and was having a very bad headache. It was obvious by looking at her that she wasn't feeling well, and that I was looking a bit distressed. The nurse was worried about putting Emily through the test with her feeling like that because the test can cause headaches and nausea. She went to go get the doctor. Meanwhile, I'm sitting in the waiting room with Emily draped across my lap to get her in a horizontal position to relieve the pressure in her head. All the while I'm holding a throw up bag in my hand in case she is ready to hurl.



The doctor came out quickly and looked at Emily and talked to me about the test. We talked about the pros and cons of the test. I told her that I felt like the test was a waste of my time anyway because I felt like all of Emily's problems were shunt related. I explained how her neurosurgeon felt like she needed to rule out endocrine issues because of some other symptoms that Emily had, but I was pretty certain that Emily was having shunt problems. After the doctor was looking at Emily laying there during her headache episode, she said she was calling the neurosurgeon to talk to her about what she wanted to do. She came back a short time later and said that Dr. Canady (the NS) said that she did want us to go ahead with the stim test while we were there, but that she then wanted to see Emily in her office and also get an MRI. I was relieved that maybe we were on our way to some answers.



We went in to get the stim test and it was time to place the IV port. It took the two women about 15 minutes searching around just to find the perfect vein. The anticipation was almost too much for Emily to bear. She was absolutely shaking the entire time they were searching up and down both arms. When they finally found just the right spot, I got into my usual position of holding down her legs with one arm, turning her head away with the other arm, and then holding down the other hand with that hand that was turning her head away. As much as I hate to admit this, holding down my children for IV's and blood draws has become an art. I'm watching as the girl pokes the needle in Emily's arm. Emily takes a quick breath in, starts saying "Ow! Ow! Ow!" (but she never cries) and then the girl starts to thread in the IV. And that's when the vein BLEW! Poor Emily. None of us had the guts to tell her right away. She was so brave right then, not even crying when they did the IV. How can we possibly tell her that they have to do it again?!?! After they pull everything out, Emily asked if it was over and the wimps of nurses STILL never said anything. I had to be the bad guy and do it. I looked into Emily's poor sad eyes and said, "I'm so sorry, Emily, but the IV messed up. It has to be done again." She just WAILED! And who can blame her? So the wimpy nurses had to do another 15 minute search for the second best vein. I then told them that they better make darn sure that they pick a good one because they don't get another chance after this one. And Emily was so darn brave. When it was getting close to time for the stick, Emily looked at me and said, "You can go ahead and hold me down now, Mommy." That is when I realized that not only do I have to hold her down so she doesn't jerk and pull the IV out, she also takes comfort in me holding her down. When this one was over and she realized it worked, she started crying and she just started telling me over and over, "I love you, Mommy! I love you, Mommy!"

After that, the test went pretty smooth. It was just long. They had to alternate between putting medicine in and then doing blood draws every 20 minutes. Emily watched a couple of movies while we waited and then it was over. While we were about to walk out the door, they handed us one of those pink spit up trays and said that we better take that with us because this medicine will often cause nausea. Oh great!

After we left that test we headed to the neurosurgeons office in a different part of the hospital. Dr. Canady's office gave us orders to take down and get an MRI. We had to walk down clear to the opposite end of the hospital to the diagnostic center to get the MRI. Because we didn't have an appointment, it took us FOREVER to get waited on and get registered. While we were waiting, that is when the nausea hit. And boy did it hit!!! There we were, standing in the hallways of the hospital and Emily got THAT LOOK on her face. I had my arms totally full of jackets, bags, my purse, a clipboard, a Nintendo DS case, and of course my Blackberry (ha-ha). I started fumbling around for that pink spit tray because, of course, the hospital can't have normal trash cans anywhere around, nor can there be a bathroom nearby. I have stuff flying everywhere while I'm throwing that pink tray at Emily. She grabs it just in time to start vomiting all in it. This nice man, who either felt very sorry for me, or was afraid he'd be thrown up on, went over and ripped the top off of the trash can so Emily could throw up in it. Once that was all dealt with, we finally got registered for the MRI. Then we went downstairs and waited for the MRI to be taken. That was when were told that Emily could not even get the MRI at that location. The wait was just too long because they were too booked. We had to leave and go to the outpatient center across from the hospital. That wouldn't have been so bad except for the fact that I had a nauseous child who has already thrown up once. Her little legs were very tired from walking through the hospital already. Plus, it was raining! But we didn't have a choice so off we went back through the maze.

We got to the outpatient center and got in immediately for the MRI. This was a brand new type of MRI they are using now. It was amazing!!! Emily did not need to be sedated. It took less than one minute (about the time for a CT scan) and I was in the room with her the whole time. Yes, it was loud, but for the amount of time she was in there, she was able to tolerate it and then it was over. AMAZING!!!!

We headed back to the hospital after that and went back to the neurosurgeon's office. Dr. Canady got us right in. She already had the MRI Emily just took because she was able to pull it up on her computer. WOW! Technology is fantastic!! She came in to talk to me and told me that according to her MRI, the shunt looks normal. But after we talked about everything, she said that it doesn't sound normal and she said that she wanted to tap it. That is when Emily screamed! Emily has had her shunt tapped several times and knows what is involved. They have to take a needle and insert it in the middle of the shunt itself. They then try to draw out cerebral spinal fluid from the shunt. I was holding Emily in my lap facing me with her head leaning against my chest. So I had a clear shot of what the doctor was doing. The second the doctor started pulling back on the plunger and there wasn't a drop of fluid going into it, I knew what it meant. My heart sank immediately. She dropped the plunger back down and tried it again. The same thing happened. She and I both made eye contact with each other and we both knew the same thing. According to this, it means her shunt isn't working and she is in shunt failure. As much as I want to drop down to the floor and start crying in a ball at the thought of my baby facing a 7th brain surgery, the reality is that I have my child sitting in my lap at that very moment and I can't let a single tear fall. I can't let my voice wobble. I have to once again dig deep down and find some kind strength to make everything okay.

I told the neurosurgeon that I wasn't comfortable with rushing into a shunt revision just because of a bad shunt tap. Yes, Emily has headaches all of the time, but her headaches aren't always severe. At least they aren't severe like her usual headaches are when she is in full blown failure. I asked if it was possible that she is just prone to headaches because of having slit ventricle syndrome. Dr. Canady actually agreed with me that she doesn't think we should rush into surgery right now either because there are always risks involved when you have to do brain surgery. What she wants to do is intracranial pressure monitoring (which is what I have been thinking all along that is needed). This will still require a surgical procedure and a hospital stay, but will not be as risky as a shunt revision. She will have to drill a small burr hole in Emily's skull to place the monitor, but it will allow her to see exactly what is going on in Emily's brain. Emily will remain in the hospital and do normal activity while being monitored. Hopefully this will give us the answers we so desperately need. If Emily is just needing some adjustments to her shunt flow, this will tell the doctor what the setting need to be. And we could still find out that Emily needs a shunt revision, and I am aware of that and okay with that. I just needed to know that we are doing everything we can to get the answers that we so desperately need. We are going to wait until after the holidays to schedule the test.

And as I went through this day of grief and torture once again with my baby girl today, there was just something that I couldn't get out of my head. It has really been bothering me and I have to take a moment to address it here and I won't say it again. I know there have been comments made out loud, and possibly maybe not out loud but maybe even thought by some, about whether or not Emily's headaches are "real". I know that there are many times in school when has gone to the nurse because of a headache and she needs to lay down or special arrangements in the classroom, but she often only has to be in a horizontal position for a few minutes for the pressure in her head to ease up. Unlike an adult who will milk a situation for sympathy, when a child starts to feel better, they show it by smiling and acting happier. When Emily's headaches are better after 15 minutes or 30 minutes or 60 minutes and she is smiling and talkative, it means that the pressure has eased. It DOES NOT mean that she was faking it. I only hope and pray that nobody ever has to go through what our family has had to endure.