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.

Terrifying -- Absolutely Terrifying

With shunt malfunctions, one can go from thriving, and showing no symptoms, to deteriorating quickly and in an coma within a matter of hours. Shunt malfunctions can be fatal, so when your child has a shunt, and you suspect a shunt malfunction, it feels like you're fighting the clock for your life, or your child's life, more accurately.

During the drive down, at first I was driving and Joe was in the back with Mira trying to keep her awake. By a half an hour into the drive, Joe was having a difficult time preventing her from falling asleep, so we pulled off in Grove City. I got her out of the car, into the cold air, and got her to wake up for a while. When I thought I could keep her awake, we got back in, and Joe and I switched. He started driving and I stayed in the back with Mira to keep her awake. For about 15 minutes, everything was okay, but by Slippery Rock, she wouldn't stay awake.

I would shake her shoulder every 15 seconds or so, and say "Mira, wake up!"  But it hit a point, where she would only wake up for a split second to whimper in pain, and wouldn't even open her eyes. Then she stopped responding to me entirely.

In this moment, I thought my daughter was slipping into a coma before my very eyes, beneath my own hand, and there was nothing I could do about it. I was terrified. Truly terrified in every cell of my body. I kept my hand on her chest to make sure she was still breathing. Tears were streaming down my face as I called Pittsburgh. I was getting ready to have an ambulance and helicopter meet us on the Interstate. 

Right as a neurosurgeon got on the phone, Mira woke up and looked up at me. I squeezed my eyes shut, and exhaled in the most relieving sigh I've ever felt in my life. Thank God, was the audible sound of my sigh, and I kept eye contact with her after I could open my eyes again.I described to the doctor what was occurring, and that we were roughly an hour away. He said as long as she is responding, it's okay, and that an ambulance and hellicopter probably wouldn't be able to get to us any quicker than we could get to the hospital at this point, so to just keep her responding to me, and get there immediately.

For the rest of the ride, I thought we were racing against the clock before she slipped into a coma. I was terrified. I kept checking the responsiveness of her pupils with my penlight, shaking her shoulder, making her look at me, checking her breath sounds, and trying not to allow myself to be overcome by the shear terror I was actually feeling.

We finally got to the hospital, and she was still responsive. Thank God.

Starting Symptoms and Heading to the Hospital

Many of you know that Mira's oxybutynin (the medicine to keep her bladder relaxed) was recently increased by almost 3x the amount she was on, two weeks ago.

Last week, the first week after her medicine was increased, she seemed to be tolerating it well, and it seemed to be doing its job. She wasn't saturating her diapers as much, and we were getting higher residuals (the amount of urine obtained during a catheterization). But as of this past week, the second week of her being on the higher dose, she started showing some of the negative side effects of the oxybutynin. Her mouth and lips would get really dry. She was more constipated than usual. After getting her oxybutynin, her skin all over her body would get red, and her cheeks would look wind-burnt. She also seemed like she was having a really difficult time regulating her body temperature. For instance, her feet and legs would be really cold, but her back would be so hot, it felt like your hand should be burnt from touching it.

She wasn't showing too many of these symptoms until Monday night. Monday, early evening, shortly after her mid-day oxybutynin dose, some of these symptoms occurred at once, which had not previously happened. Her skin was red all over her body, she was really irritable and uncomfortable, her cheeks, mouth, and lips were dry. And her internal temperature was slightly high, 100.0 on the dot. She had not previously had a fever correlated to her oxybutynin, but I gave her some Tylenol. Within a half an hour, she was fine. But throughout that night, it was seeming to me like she wasn't having bowel movements like she normally does. 

Then Tuesday morning, she got her oxybutynin around 8 am. She only had a smear of poop in her diaper, which is unusual for her. At 9 am, Mira's pediatric nurse, Sheila, arrived for her shift, and when she picked up Mira, Mira cried out like it hurt her to be moved. She did it again each time for the next couple of hours. By noon, she started getting really lethargic, and Sheila and I noticed that she her fontanelle (soft spot) was getting harder. Her shunt site, which is usually extremely defined, was becoming less defined around the hardware, and Mira felt really hot to the touch, even though she wasn't running a fever. By 1 o'clock, when I was leaving to get Dustin from school, Sheila and I suspected shunt malfunction, and I started making the appropriate calls to get Mira to the hospital. 

I called my Dad so he could take Dustin, our 5-year-old son, and Aryanna, our 2-year-old daughter. 

As I was getting Dustin from school, packing up the kids, and waking up Joe (as he had just worked the night before); Sheila was packing up Mira's bag, and getting her ready to go.

During this time, Mira was becoming less and less responsive, and was over all difficult to keep awake. 

I called down to Children's hospital, and asked if she should be life-flighted from Greenville. 

They said that if I thought she'd make it, to just head down, but if anything changed during the drive, I could call and have emergency response meet us on the Interstate. 

So we threw everything in the car, and off we went to the hospital.

Updates

I just realized that my most recent blog post was a while ago when we were waiting to see if Mira was going to have emergency surgery. Thank God, she did not have surgery. The issues resolved after we got her bowel movements under control. She now takes miralax once a day in one of her bottles. This keeps her regular, keeps her internal pressure down, and keeps her shunt working properly. Seriously, though, who knew constipation could be so horrible? And she wasn't even extremely constipated. It just turns out that with her, if she doesn't have a bowel movement at least once a day, her shunt gets backed up, which causes the ventricles in her brain to swell. At least we know what the cause was, and we know how to avoid this problem in the future!

When we were in the hospital, though they decided to do some routine tests to make sure everything else was going smoothly. One of the tests they did was an ultrasound of her kidneys, ureters, and bladder. The test results revealed that her ureters, going into her kidneys, were dilated, which indicates the pressure in her bladder is still reaching dangerous levels, even with her being on the medicine that relaxes her bladder and being catheterized every 4-5 hours. With this information, and the weight she as put on, we have now changed her bladder care plan. So she was getting cathed every 4-5 hours while she was awake, and she was also receiving 0.2 mg's of oxybutynin three times a day. The schedule now is that she gets cathed every 3 hours while she is awake, and that she receives 0.5 mg's of oxybutynin three times a day. This new schedule ensures that the pressure in her bladder is staying low, while also trying to train her bladder to function normally. 

OH! We also only have to wear her hip abductor on her at night now! No more half of every day, and all night long, just at night while she sleeps! Her hip is in the socket now! It's still a tad shallow, but nothing like it was! It should resolve itself as she grows, and we may never have to face hip surgery! Yay!

We are also getting ready to add occupational therapy to her weekly schedule. She already does physical therapy meetings once a week, and we do her physical therapy with her every day, but now that she's interacting with items, and playing with her hands, and becoming incredibly alert to her surroundings, occupational therapy wll benefit by really helping her develop those fine motor skills!

So those are the changes in her treatment plan, and the care that has altered in our every day lives, but she is just doing fantastic! She's so happy, healthy, and beautiful!

We Shall See...

Right now is a lot of just waiting to see...

It turns out, they only scheduled Mira for shunt surgery for Friday morning as a precaution. Dr. Greene wants to be sure that, if anything is revealed on Thursday indicating a malfunction, Mira already has a surgical slot available. So as of this moment, nothing is indicating that she needs surgery. We will reassess that option after obtaining new scans and lab results on Thursday.

As for her hip, I am waiting for the head of Ortho to review her hip ultrasound results and call me back. His secretary said I should be receiving that call later this afternoon. So right now, I'm just watching and waiting, and we shall see over the next few days what the results are for everything.

Scared to Sleep

With Mira clearly having problems, and not knowing the cause of those problems, I'm scared to even sleep. What if I'm asleep when her condition worsens? What if I sleep away the window of opportunity one has to get help when a shunt malfunctions?

This is why last night I slept with a stethoscope in my ears, listening to her breathing. This is why I only got a total of three hours of sleep last night. And this is why I can't bring myself to crawl into bed now. Because I'm afraid to go to sleep and take my eyes and awareness off of her.

Tonight, while I was eating dinner with the kids, I got a call from children's hospital OR scheduling team to confirm Mira's shunt surgery on Friday morning. Problem is, Joe and I were never informed that Mira is scheduled for surgery, let alone that it was even on the table. Now I have to wait until tomorrow morning to find out what exactly is going on. Does she need surgery? Did they find something on her scans that indicates a problem with her shunt? And why the hell was OR staff informed of my daughter's possibly surgical condition before I was?

We've been on high alert since yesterday. Watching everything she does. Looking for any symptom known correlated with spina bifida, hydrocephalus, chiari, or shunt problems. We've been logging everything. How much she eats, how much she urinates and poops, cath volumes, head circumference, and neurological deficit indicators. She has seemed okay, but something still seems off.

Then tonight, as our pediatric nurse was leaving, Mira vomited all over the both of them. Not spit up... Threw up. This could be one of two things... She is adjusting to the prune juice we've been having to give her,or her shunt is malfunctioning. She is sleeping now, but I'm watching her and checking her constantly.

If anything, and I mean absolutely anything, makes me lean towards shunt malfunction, I will be calling an ambulance and demanding that a paramedic escorts Mira to children's hospital. If I think she is encountering a problem, I will not wait until Thursday morning for her to be seen, assessed, and treated, because with shunt malfunctions, Thursday morning could be too late. I'm not putting my daughter's life on the line for scheduling purposes. So it's high alert time! Every neuron and nerve ending in my body is standing at attention! And I'm scared to death to fall asleep.

Praise God!... And Prune Juice!!!

She finally pooped! After giving her bottles with prune juice in them since last night, she finally pooped. And not a rock hard nugget that causes all the pressure, but some normal, disgusting, foul smelling, baby poop! Praise God, and prune juice!
After she pooped, her soft spot was a little softer. We're still on high alert, watching her every movement, checking her soft spot, shunt, back, eye reaction to light, tummy bloating, bowel sounds, and level of alertness. But, she's smiling, cooing, eating, and (finally) pooping!
I think we're going to be okay to wait until Thursday for her next head scan and meeting with Dr. Greene. Prayers for good news, no faulty shunt, and no surgery! Prayers that all it took was a couple bottles of prune juice to avoid a life-threatening complication. How beautifully simple, prune juice, and how incredibly grateful I am to have had the privelage to change that disgusting, massive, relieving, mess-of-a-diaper just a little bit ago! So again, praise God, and praise prune juice!