Tough Day

Well, it's been quite the hellacious 24 hours.

Yesterday afternoon, we took Vivian off of Precedex because her heart rhythm became irregular, which is a common side effect. After being off it for awhile, she started to become her normal sweet, playful self intermittently.

They advanced her diet and she was able to eat anything so I was helping her with her very first meal since surgery. I was placing everything in her mouth, then I realized I wasn't doing her any favors by doing everything for her.. so I wanted to make her do some of it herself. I began handing her goldfish to her left hand and she would immediately, gracefully, put them in her mouth. Whoo! Strength AND coordination! After awhile, I realized she wasn't even trying with her right hand.. so I started asking her to move it. She couldn't. It was completely flaccid. I let the nurse know.. and that's when all hell broke loose.

Since she had been on Precedex, it was hard to really assess her neuro function.. but I SWORE she had moved that arm. I had no specific memory of it, but I thought I had to hold it down. Also, during surgery, they monitored her neuro status and the neurosurgeon said everything was still intact at the end of surgery and she wouldn't have any damage.

So her lack of mobility and reflex was a big red flag. They ordered a STAT MRI. This was a process because she normally needs anesthesia for it, but couldn't because she had just eaten. So they had to restart her Precedex, give her a ton of fentanyl and ketamine to keep her still. It was also dicey because right next to us a baby wasn't doing well (and our nurse was the nurse of that patient as well). Jake and I were an emotional wreck.

We finally got her to MRI. They were concerned something was pressing on her spinal cord causing the lack of mobility. If so, they were planning of emergency surgery. No stress, right?

However, the MRI showed no changes. So they brought her back to us and decided to try to medically manage it. The woul her on EPI to increase her blood flow to her spinal cord. They also put her on a stronger steroid. If these medications didn't work, she would have an "exploratory" surgery to see what is going on. That.. sounds.. awful. I don't need someone opening up my kid's spine to "explore" it. No, thank you!!!!!!

Because the epi is hard on her little veins, they started a central line in her groin. And to closely monitor her BP, they RESTARTED her arterial line. Mind you, this is all at 1am. It was awful being in there and hearing her intermittently saying "Mamaaa". I wanted to vomit, but it was super sterile in there so I kept it together. Just kidding, I lost my mind and Jake had to cuddle me like a baby.

Finally, she was settled around 3am. Then, at 5am neurosurgery came in to reassess. Things seemed about the same.

It was pretty touch and go all day. We checked her right hand a million times. They really want her fingers to move because if the furthest part of the extremity works, the rest will.

Around 230pm, we saw a little bit of movement. When I lift her arm and dropped it gently, she was able to hold it against gravity slightly. About 1/10 times I could see the slightest bit of movement, but not purposeful and not when I asked.

Around 430pm, neurosurgery came in and asked her to move her fingers. She is. Slightly, but she did.. and on command. He was happy with that. We are going to continue the same treatment and monitor her closely. She will continue to stay in the ICU.

Pain wise, she is super controlled. She never complains! It's great. The hardest part is seeing how scared she is. She is just terrified of everything and is so on edge. She has periods of being sweet and fun.. but they are few and far between.

I'm trying to be patient, but it's hard. I just want my kid to be normal.. and dance and play whatever sport she wants.. and have no limits.

Tomorrow, she will be able to sit up. She has a god awful back brace to wear for 3-6 months, but if it prevents any further surgery.. BRING. IT. ON.

I'm hoping to catch some sleep tonight. I was an emotional wreck all day. Being away from 2/3 kids on Mother's Day.. one kid possibly being rushed off for surgery.. no sleep.. (PMSing)... I mean, I was a mess. They actually asked if I needed to speak with a chaplain. Lordy.

Tomorrow will be better. Physical therapy and occupational therapy are coming to work with her a bit. She won't participate, I'm sure. She hates these people and won't do anything for anyone. Stubborn lil thing. I'm just hoping they show us how to help her and us work with her like crazy. I thought inpatient rehab MIGHT have been off the table.. but it's not.

We will make it. My daily devotional reads "When you face unexpected demands, there is no need to panic. Remember that I am with you. Talk with Me, and listen while I talk you through each challenging situation."

I'm all ears, God.