These last 10 days have been rough for Meggy. It all started a week ago Tuesday when out of nowhere, she became lethargic and grumpy. Within an hour, she had a 103 fever. I gave her Tylenol because she was obviously uncomfortable. When it jumped to 103.8 two hours later, I started to panic a little bit. She had NO other symptoms - no sniffly nose, not even a sneeze. I called her Pediatrician and she said to bring her in.
So we went off to Children's ... she was still "blah" (don't you love my technical terminology) and still feverish. She was whimpering and obviously not herself. They drew blood and sent it off to culture and also for another quick blood count to look deeper. They wanted to see what the underlying cells were reading with her white count being high. After a bit, the doctor came back in and said though her white count was elevated, the underlying factors were all normal. They would watch the cultures, but as far as he was concerned, she could go home. The good news was no apparent shunt infection.. but the bad news was we had the "non-answer" answer.
Obviously in discomfort
Wednesday came quickly and we went down to Children's for Meagan's scan. She did wonderfully through the scan, in large part because she didnt' feel well so she just laid there for the whole thing. We walked across the street to Dr. R's (Neurosurgeon) office and waited to see him. Once we got back to the room, Dr. R could clearly see something was off with Meagan. Her eyes were glassy and wouldn't open fully. She just looked like she was miserable, in pain, or not herself. He looked at her scan and actually did a little jump and clapped. He said as far as her ventricles and brain looked, he didn't think anything on the inside was causing her discomfort, at least visibly. He said her ventricles looked good - the fluid levels had continued to decrease, and so the shunt was still working properly. He was sorry he didn't have more answers for us, but who does in Hydro honestly. So we headed home.
Of course, later that day, I heard Meagan cough a few times. I didnt' think anything of it.. but then that evening she REALLY coughed. When she woke up, I noticed she couldn't open her eyes because they were "glued" shut with green and yellow goop and she just looked like a mess. The cough continued to worsen and I felt so badly she was so miserable! She still had fevers cropping up daily and was obviously still not feeling well. I decided to take her in to the Pediatrician to just double check her lungs. Her lungs checked out clear at the Pediatrician's office, so we went home.
It is pretty sad when your child finally develops a nasty cough and gross eyes... and you are actually happy about it. But I'd honestly take almost anything else over a shunt infection or malfunction. Both are serious issues and require brain surgery. Again. So while I was upset at not having "THE" answer as to why she has been so uncomfortable, I am also happy it is not her shunt. The best explanation I can come up with in hindsight based on all her symptoms, the fevers, and the eye/head sensitivity is either some sort of random headaches associated with a virus she's fighting, or some sort of lingering sinus infection, thereby making her head and light sensitive and cropping up fevers while her body fights it.
So head and light sensitive
These last 10 days have definitely brought me back to the reality of Meagan's situation. Hearing of other Hydro children losing the battle and dealing with miserable Meagan with all the "what ifs" going through my head..... Everything with Hydro, it seems, is a "non-answer" answer. Everything is a guessing game. And every time your child gets a sniffle, a cold, a fever, or just starts acting "off" or miserable, you never again blow it off as a virus or just an off day. You never again are OK with "waiting things out." Every time something happens, your mind immediately jumps to "Please let it not be her shunt."
It may seem silly to some, but I know my fellow Hydro moms and dads know exactly what I'm talking about. There is literally 6 feet of plastic catheter tubing in Meagan... keeping her alive. ALIVE. This is often something I don't think about, nor focus on. But with the events of the last few weeks, hearing of other children losing the fight, and having others, while well intentioned, telling me "at least the worst is over.....she had the surgery so she's fine..etc... all of these things have really made me remember just exactly what we are dealing with here. So when Meagan gets sick and the danger of shunt infection crosses my mind... .or she starts acting off or doing poorly at therapy and the thought of a shunt malfunction crosses my mind... it is very real. It's not "over-worrying".... and not being crazy overzealous parent. It is what it is when your child, very literally, relies on a small unreliable man made device to live everyday.
It's a very strange and unnatural relationship I have with Meagan's shunt. I want to preface by saying I am not at all ungrateful...for without it she would not be here. I am thankful there is a way to keep her here with us but I feel the need to vent for the reality that it is or I wouldn't be being honest with myself. It is definitely a strange existence.