Monday, September 2, 2013

Pinch Me

The other day my daughter wistfully asked me in a small voice, "Mommy, am I dreaming? Pinch me. Is this real"? The 'dream' she was referring to is actually a nightmare, and it is very real.
A few weeks ago she had mastoiditis surgery on her ear. They were just about to release her from the hospital when her (very excellent and thorough) ear surgeon requested an MRI as a precursor to being released. That MRI revealed a large blood clot in her head, and a pocket of infection also in her head. In fact, very near her carotid artery. As bad as this news was, we were thankful that they did an MRI so we could address it, and thankful the infection wasn't worse. Instead of going home, we were instead tearfully and immediately transferred to the PICU, Pediatric Intensive Care Unit.

It was the hardest night of my life. At this point, there was so much we didn't know. Providentially, her surgeon days before she even knew of this complication, had started K on 3 powerful broad spectrum antibiotics 'just in case' of meningitis. Those antibiotics started so early were.... well, a godsend. And her surgeon also took several cultures after the surgery to send to the lab. It took days and days but some finally began to grow and confirm that we were treating it correctly.

The day after they hastily transferred us to PICU they performed another MRI. And we waited anxiously. They wouldn't allow her to eat afterwards, even though she hadn't eaten for the past 16 hours, because there was a possibility they'd need to perform emergency neurosurgery. We waited while the team of doctors reviewed the images with the radiologist. And rejoiced when the verdict was that they thought the infection looked just slightly less. The antibiotics were working! We were kept in the PICU for a bit longer as they worked on getting the heparin dose just right. Once done, we were moved back to pediatrics to await her getting stronger and more stable enough to go home. Plus, they had to figure out what antibiotic regimen we could perform at home. They taught David how to do the heparin (lovenox) injections and I learned how to administer antibiotics through her PICC line.

We went home. I think we were more fearful than when we brought Conor home as a newborn, taking her temperature several times a day, paranoid we were not doing her PICC line exactly right. She was tired, too tired to attend school, which was fine because she had at least one doctor appointment every day that week and even another surgery that week, only this time we were released to go home immediately. Then a few days later, I emailed K's surgeon; she wasn't doing so great. Fever. Tiredness. Her doctor called me back, asking some questions of her vision and urged me to take her to the ER right away. Another MRI. A stay in the PICU and now, we're still in the hospital. I'll flesh out the days more in a subsequent post, but it has truly been a very hard and long road to recovery. Sometimes it is hard to see that we are moving forward. It isn't as neat and tidy as I'd like but it is progress, just intermixed with a lot of questions and tears. Some days I wonder if she'll make it out okay. Other days I reflect back at God's goodness and how far He has already brought us, the amazing doctors he's put in her life, the numerous people that are praying for her -- even states away from us.
Honestly, I wish it was a dream and I'd wake up and it never happened. But it is happening. And as much as I'd like to ignore it or hide from it, I can't.

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