Shunt Taps and Emotional Breakdowns

We were admitted into the ER very quickly, and they immediately started running tests. One was a CT, which I demanded they use the low-radiation CT scanner on the second floor, not the normal-level-radiation CT scanner on the ER floor. If Mira is going to be getting regular head scans for the rest of her life, it's important to make sure she's not being subjected to anymore radiation than absolutely necessary.

They did two ultrasounds, one of her shunt tract and one of the bottom of her abdomen, looking for any obstructions throughout the length of her shunt tract, and at the end where the shunt empties the cerebral spinal fluid into the bottom of the abdominal cavity.

They did blood work, urine cultures, and started an IV site. They took her temperature, and for the first time she had a real fever, 103.6. One of the highest fevers she's ever had. She was miserable. Lethargic, red, irritable, and uncomfortable.

Joe had just went to get me a cup of coffee, when they came in to get her blood samples. I asked them to take the blood from one of her feet, and create the IV site there, as well. I know this is more difficult, but with Mira, she has prominent, yet small veins, so it's difficult no matter where they try for it, and at least in one of her feet, she won't feel it. So I always request for them to do such testing in her feet so she won't be in more pain. They just have to be careful if they do it on her club foot, because she can't have a bandaid or medical tape in a position that causes the creases of her club foot to crease more. So when they do anything with her club foot, they need to pay attention to their placement, so they don't undo all the progress we've made with her physical therapy. 

I thought these little things in her best interest were all I had to worry about while they were drawing blood, and I was waiting for Joe to return with my coffee. However, halfway through the nurses getting the blood samples, a neurosurgeon came in and said they need to do a shunt tap because the results of her CT revealed her ventricles are enlarged. This is more affirmation of a shunt malfunction, but hey need to measure the pressure in her ventricles and shunt. In order to do that, they "tap the shunt". This means they use a needle that goes through her head, into the shunt. Once the needle is in place, they attach a device to it that is fitted with a tube. That tube is marked like a thermometer, or a measuring cup. Once the tube is in place, the cerebral spinal fluid will leach its way into the tube, displaying the level of pressure within her head of cerebral spinal fluid.

Once the neurosurgeon explained the procedure, the purpose of it, and how this test would be the final factor to dictate whether or not she'd be getting surgery, I concented. I've never even heard of this test before, so I didn't know to expect it, but they explained that if the pressure revealed a level of 22 or higher, that would definitely indicate shunt malfunction. They also explained that she will be in pain right after they put the needle into the shunt, but directly after that, we need to calm her down to obtain an accurate reading. If she's tense, distressed, or crying when they're trying to get a measurement, her distress will increase the pressure, and the results will be deceivingly high; so we need to get a measurement level when she is calm and at rest. 

So, we started. The neurosurgeon prepped her shunt site, a nurse held her head still, and a resident handed the neurosurgeon equipment as needed. I held down my baby's arms while she screamed, as they stuck a needle in her head. I'm going to repeat that because I can still barely wrap my mind around it. I held my baby's arms down while she screamed, as they stuck a needle in her head. It was horrible. But in that moment, I only cared about what she needed, so I held her hands with one of my hands, and immediately started trying to pacify her with her binky, her favorite cloth book, her favorite ball, and my soothing voice. I got her calm, I got her distracted, and they got an accurate reading. It was 16. Much lower than the dreaded 22 or higher. He said this is not what he expected, but it was very reassuring. He said the ultimate decision as to whether or not she's getting surgery is not up to him, it was up to the chair of neurosurgery, so she could still get the surgery, but it was much less likely now that she is actually having a shunt malfunction.

I felt more relieved, and Joe arrived with my coffee. Mira was smiling, and all the doctors cleared out of the room. I thought everything was fine, because I was only focused on what she needed at the time. But as the danger and pain to her faded, it started sinking it what I had just done/witnessed happen to my daughter. As I stood by her bed, coffee in hand, the room started looking like it was swaying back and forth. I told Joe "I think I'm gonna throw up. I need to go outside." So off I went.

As I was walking out, I could tell I was going to explode with tears any minute. I don't know why it hit me so hard, especially after it was already over, but it did. I could tell that as soon as I spoke a sentence, I was going to lose it. The tears were already touching my eye lashes, and welling on my lids, but I needed to get it out. 

I walked to the far end of one of the parking lots, trying to get away from people, so I could call someone. A random woman came up and started trying to small talk with me. I felt horrible, because in normal circumstances, I would never brush someone off or be rude, but all I could say was "yeah" and then I walked away a few steps as my best friend and soulmate, Allison, called me back. As soon as I got the phone to my ear, I started sobbing, and said "I held her arms down while she was screaming. I held her little arms down while she screamed. While they stuck a needle in her head." The uncontrollable crying just kept taking over, again and again, and I could not stop sobbing. I curled up on a set of steps, and bawled into the phone as Allison tried to console me. 

That type of cry reminded me of the first time I met Mira. The first time I got to touch her, and hold her tiny hand, and how after only 60 seconds of seeing her, they took her away. They had to take her for her surgery, and I had just met her, and couldn't go with her. When I had to let go of her little hand then, the sobs just bursted out of me. 

That's how this was. I couldn't control it, I couldn't dial it back, I couldn't stop it. All I could do was break down, and cry. In between outbursts, I kept saying that I didn't know why this was effecting me so much, why, after everything we've been through, this procedure shook me so badly. But it did. Eventually Allison talked me down. She got me talking about other things that had happened, got the focus back on what's going on with, and what's best for, Mira. We said our "love you's", got off the phone, I dried my tears, and went back in to be with my girl.