Tuesday, December 25, 2012

Our first hospital stay

     That night Peanut struggled to stay asleep. Her hands had been tied down to prevent her from pulling out her tube. I remember jumping out of bed in the middle of the night because I heard Peanut's nurse yelling, "No, no, no!" We quieted her down and held down her arms until the meds took effect and she was calm and still again. The next several days were overwhelming and intense. We eventually learned that Peanut had an AVM in her brain - a tangle of unnecessary arteries and veins with no capillaries between - causing a high risk of bleeding in the brain. There was no way to determine what if any damage had been done already from the bleed she had suffered until she returned to consciousness. Although it seemed like we waited forever, it wasn't long before she awakened. I quickly noticed that she was behaving as she had about a year ago - her speech was more baby-ish, and her movements were not as fluid as before. She had difficulty holding a spoon or crayon. However, as time progressed all of these deficits disappeared. We have had an incredible journey of miracle after miracle. It was overwhelming, scary and amazing to be sent home a mere 6 days after our daughter had been at death's door! After an angiogram to map out the exact location and size of the AVM, doctors decided they needed to have a conference with all the doctors who could potentially treat her to determine the best method of treatment. We were aware of all 3 options for AVM treatment - surgery, embolization and radiation. The pros and cons of each were reviewed with us but ultimately we were sent home with no plan for treatment. However, we were pretty certain that surgery would not take place - the AVM was too deep in the brain - in the language center of the brain which explained her baby-ish speech upon awakening from her coma.
     Once we returned home, Peanut had round the clock headaches but they were manageable with children's Tylenol. We returned home afraid to have her do much of anything a normal 4 year old would do - run, jump, play, swing, anything that involved lots of movement or presented the risk of bumping her head. We were overly cautious in the first weeks and months after she was released from the hospital but it made it easier to allow her to move around and play without feeling like we were taking too much of a risk. As the weeks progressed, we became anxious to hear from the doctors and know what our next step was. Within a couple weeks Peanut's headaches had stopped and she was able to go through her day without any Tylenol. We became more comfortable with the diagnosis and were able to enjoy our summer. The doctor's had a rough time getting everyone in the conference to discuss her case. We anxiously awaited and frequently called Peanut's neurosurgeon for word on what our next step was.