So apparently, this is my 100th post...and it's a doozie.
If you've been following me on facebook, you probably already know the drama that's unfolded over the past few days. Maddie is in the hospital. She's being treated for a bacterial infection called cellulitis, which may be involving her shunt. At this point there are more questions than answers, and we are all anxiously awaiting results from her shunt tap culture. Yesterday I watched them stick a needle in my baby girl's head to figure out if the shunt is making her sick...and the irony is, yesterday was the 3 year anniversary of her shunt placement surgery. Three years of a perfectly working shunt, and that's how we celebrated. I watched the same Doctor who placed her shunt, 3 years ago, now tapping it for answers. Crazy.
It all started Friday. Maddie had an upset stomach right before her swim therapy. I didn't think much of it, because the kids had chowed down on the V-day cookie cakes we made for Chris the night before. The cramping continued during her lesson, so we cut it short. (Sadly, the Times Picayune chose that particular day to shoot for a story on aquatherapy, and Maddie was miserable...so who knows what those pics will look like) Anyway, by Saturday afternoon she was running a low fever. I gave her some Motrin, and she seemed fine for the rest of the day. That night, things went downhill fast. She got really irritable, spiked 103 fever, and wanted to be held. Then she started complaining about pain in her neck. She didn't want to move it...wouldn't let me touch it...started sobbing when I shifted her on the sofa. She was in serious pain. Now I know just enough about meningitis, to know that fever and neck pain can be no joke. I made a few quick calls, and everyone agreed we should go to the ER. This was the first ER trip we've ever made for either of our kids.
We got to Slidell Memorial around 10:30 that night. The last dose of Motrin was kicking in and she was coming down from the fever. She was smiling and chatty again, so the doc quickly ruled out meningitis and shunt failure. They tested for flu, strep, and uti...all negative. As we were preparing to leave, I noticed a red mark peeking out of the top of Maddie's jammies. I asked about it, and we decided she must have scratched herself when thrashing about during the tests. We were sent home with Rx for antibiotics, and told she had pharyngitis. Relief.
Sunday we started the antibiotics, and continued to treat fever. I took Mason to a couple of birthday parties, while Chris stayed home and Maddie slept. When I came home Maddie was on the sofa, pale and miserable. She wanted to lay on me, but wouldn't let me touch her neck or chest area. The Motrin wasn't bringing the fever down, so I decided to give her a cool bath. That's when I saw the red mark again. It was longer, red and inflamed. I brushed my hand over it lightly as I washed her, and she screamed. It was a quick pass, but just long enough for me to feel the tubing of her shunt underneath. My heart dropped. I snapped a few pictures, and quickly called the ER back. I sent the pics to our doctor's phone, and he called back quickly. He suspected cellulitis, possible shunt infection, and asked how quickly could we get to Children's Hospital? Panic.
We raced here, and they began tests immediately in the ER. To say I was a nervous wreck is a huge understatement. I was nauseous, weak, and finding it really difficult to breathe. A full blown panic attack, that seemed to last the entire night. The redness was spreading. The ER doc had drawn a circle around the perimeter of it, and now it was creeping past those inky lines.
Monday morning, new spots of red had appeared, like a little trail down her tummy, right along the shunt track. The neurosurgery team came early, and tapped the shunt. This was alot worse for me than for her. Unlike the IV experience, Maddie did not seem to feel the needle being inserted into her scalp. She held still and talked to the nurse about her favorite princesses. I held my breath the entire time. They were able to extract the tiniest amount of fluid...and those precious drops have been the topic of much discussion since then. It takes a full 48 hours to determine bacterial growth, and so far nothing has happened. White cells were detected, but no new growth, so it's still possible this thing hasn't gotten to her shunt. Obviously, everyone is baffled as to how and why it would present as a red streak right down the shunt track...but the consensus is, if she looks well clinically speaking, and the test comes back clear, we won't question it. If it comes back positive for bacterial growth, we have lots more to talk about. The shunt would need to be externalized, she would need to be cleared of infection, and a new shunt placement would occur. We'll cross that bridge if or when we get there. For now, no news is good news...and we've heard nothing from the lab.
Today was a good day. Maddie was in great spirits most of day, and had no fever. We were able to take a couple of walks today, and she was so happy to be out of bed. Her appetite was back, and the best news is the red marks down her chest and tummy are diminishing! It's getting better, and I am praying tomorrow will be great news from the lab. If all goes well, we should be talking about going home soon...and I really hope we will.
This has been hard. I just posted about how great things have been, and how normal our routines have gotten, when out of nowhere comes this...and I couldn't feel less normal than I do right now. My heart breaks for all my friends out there who have been through this, and so much worse, many times over. There is nothing worse than seeing your child in pain, and suffering, and feeling helpless to do anything about it. It's excruciating to see Maddie poked, and prodded, tested, and stuck, and hear her beg me to make them stop. I want this to be over soon. I'm tired, and I want my girl back. Please continue to keep her in your thoughts and prayers...Your love, support, and encouragement have been overwhelming, and have truly lifted our spirits throughout this ordeal. I am amazed and humbled by the number of people lifting us up in prayer...we feel it, and we are grateful beyond words.