Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, May 16, 2016

The Perfect Storm

Since Meagan's surgery 11 days ago, she has been doing well. She was back to her normal "go get em" self, and even gave herself a black eye trying to walk around her second day home. She went back to school last week (which she loves) and seemed to be doing well. In hindsight I should have known *something* was up because throughout the week she wasn't eating as she normally does. But, she had also been through her first surgery in a year and I attributed it to recovery. By the end of the week, Meagan's mood was turning slightly whiny, but again, i attributed it to recovery. Saturday was a crazy day - I taught dance lessons all morning, went home to shower and get my music and flute and then went on to my symphony rehearsal and performance. I didn't see Megs (or any of the kids) much that day, and Brian had mentioned that Meagan had been "eh." When he says that I know something is up because typically she's not just "eh," especially on a day with daddy.

Today we woke up like any other day. The girls had Irish dance workshops all day long and we had planned for us to split the driving duties so by the day's end, we were all together at dance and then would go to evening Mass together. Needless to say that did not happen. 

Meagan was rather lethargic all day. She was still talkative but didn't want to move from Brian's chair. Remember, this is the kid who wanted to walk so badly after surgery, that she did so, and gave herself a black eye for trying. So something wasn't right. As the day went on she just looked "grey."  That's the best way I can describe it. Then the heat. I could feel the heat a few inches away from her. I got the thermometer and Yep. 104 temp. 

Now you may say "kids get sick" etc. Well yea. They do. And even kids like Megs get "normal" kid stuff. But my mama gut red flags were just screaming at me. We were 10 days post op. And suddenly my kid was laying across the chair. Grey. Lethargic. And high temp. In these situations you are literally praying for some other symptom to show. A stuffy nose. Cough. Anything to be just a "normal" kid thing. But as the hours went on, I could tell she was not well. After discussing my concerns with the Pediatrician, we both decided Meagan needed to go in. 

We arrived at CHOA in the evening. Because of her symptoms they were very quick at getting us back to a room. The plan was to run a viral panel and blood work. One or the other was going to give us a direction. I was hoping for a virus. Again, one of those weird prayers you pray as a hydro parent when your kid is down. 

After a few hours we did get some results. Her blood work came back showing her white counts (infection markers) over 25,000. Her CRP (inflammation markers) was 9.5. Crap. Sorry but that's the first word that came to mind. Neurosurgery was paged. One of Dr. R's  colleagues came in and did a shunt tap. He couldn't pull much fluid from her shunt, but was able to get enough for a culture. The first cultures should be ready in the morning. If her CSF shows growth then unfortunately it means back to the OR to externalize Meagans shunt.  If the CSF doesn't show any growth, we treat her anyway and recheck the 24 hour cultures. Infection in spinal fluid is not anything you mess around with. Luckily Dr. R's colleague agreed and wasn't going to wait for cultures to start hitting hard with meds. Unfortunately Meagan reacts to the ideal medicine to treat such infections, but with close monitoring and allergy meds she made it through most of the dose. After that, they started her immediately on another medicine to help her body keep fighting the infection while we await the cultures. 

People have said its the perfect storm - the timing post op, the blood counts, the fever - for a raging infection to be showing itself. Unfortunately my gut feeling shares that sentiment. However, this isn't Meagan's first storm. So I have faith that with more answers tomorrow and continuing aggressive treatment by her doctors we will hopefully have caught this early and see her turn around. The funny thing about storms is that they do end and the sun always comes out. But in this case, I'm lucky to have light through the storm - and that's Meagan. She is sunshine to everyone that knows her and loves her and we can't wait to see her sweet self feeling better soon! 

We will keep everyone posted as we know updates. 


  1. Oh no! I hope the cultures don't grow anything. We just went through this last month. Ellie had been off, she was in the hospital for about a week with ICP monitoring. They did a revision. The day after we came home from the hospital, my other daughter came down with strep throat that had her vomiting and lethargic. Sure enough, five days later Ellie was vomiting and lethargic. We were hoping it was just strep, but within 24 hours we could no longer wake her up. Back to the hospital we went where she spent some time in the ICU and another revision. She was doing great after that and even went back to school and was eating again. However, one week later she spiked a fever of 104 so back we went suspecting infection. Lucky for us, her cultures came back negative but I really thought it was an infection. So we had one time where it was a shunt issue, and one time it was "kids just get sick". Its so hard though when you just don't know.

    1. Yea her whites and CRP were through the roof - they did a viral panel, etc etc and she was negative for that. Because of her numbers they know we are fighting infection, but so far (thankfully), not one in the CSF... we are waiting new blood numbers today. Glad your sweetie is ok!