It has been quite a bit of a roller coaster since we arrived home from the hospital. Last Tuesday, a couple of days after we arrived home, we took Meara back to Childrens for a MRI and neurosurgery visit. She had been throwing up, not eating, and was very lethargic. The MRI showed fluid build up between her scalp and skull but not inside the brain itself. The nurse practitioner prescribed more steroid and within 12 hours Meara was back to eating and being active again.
Meanwhile, the seizure activity remained, in fact, sort of ramping up a bit compared to what it was earlier in the week. Meara is still sleeping with us because we are still trying to keep track of the frequency and duration.
Towards the end of the week she started to get more lethargic again and complaining that her head hurt. We had a neurosurgery check up on Monday of this week for a wound check. She checked out fine and everything seemed okay. As soon as we got home from the hospital though Meara complained that her head hurt and throughout the night she was throwing up and complaining of the pain. She developed a high fever overnight and this morning Megan called neurosurgery. They were able to get us back in for another MRI and check up in the clinic. The MRI showed a massive amount of fluid build up in between her scalp and skull (more than last week's MRI). This time the nurse practitioner took a syringe and inserted it above her ear but below the incision (from surgery). She was able to drain 190ml of fluid (that is a little over 6oz.). Immediately Meara felt better and by the time we got downstairs and finished in the lab (taking blood for tests) she was eating chicken tenders and french fries in the hospital cafeteria.
About five minutes before we got home the nurse practitioner called to tell us that the initial tests came back from the fluid they took from her head. According to two of the infection markers she was in the clear - no infection. That is awesome. Her white cell count was up a bit but that could be from the steroids or possibly a UTI which we are headed to the primary care doctor tomorrow to check out.
And…we think…she has gone two days without seizures. We can't be sure. Maybe we are sleeping through them. Maybe she isn't having them. Megan and I have not witnessed any the past two nights. We aren't calling it control. We are just taking it one day/night at a time. Finding peace in small success and walls overcome.
There are many times a day that I recite this mantra to myself: give me strength and give me hope. Give me a channel to navigate this family through. May it be treacherous or an easy lazy glide through the peaceful sky filled with shining stars. Whichever it may be…difficult or easy, light or dark…one thing is for sure. We get through it. As I stood across from my wife this afternoon, Meara in the middle on the examining table, the nurse taking fluid from our daughter's head…I realized we weren't worried. We had complete trust in our medical team. We were calm and reassuring Meara. She was brave and hung in there like a champ.
Life is one big complete gamble. That is all it is. At times we might have more figured out than not and we can say that we engineered our life a certain way…I argue that life is a series of decisions. These decisions lead to outcomes. Sometimes we know for sure what these outcomes will be. Most of the time, if we are really honest, it is a gamble. What we can really do though is trust. Trust that after all is said and done that everything will be okay no matter the decision made or the outcome because of it.
That is where I will leave this update for now…that everything will be okay. Because whether the sea is treacherous or we are sailing calm waters…we know that our journey will provide passage to somewhere new and somewhere that is rife with meaning. Wherever that might be…
Peace, love, and all of our gratitude (in massive quantity!),
Aaron & Megan