Fighting the Old Demons

Where has the past week gone?

It started last week on Wednesday when I put a "well" Jaycee to bed. An hour later, she was up crying and turning blue. When the home interventions were obviously not helping we rushed her to the emergency room. I rang in Thanksgiving in the emergency room with my husband and hospital staff. After tests and monitoring, Jaycee was determined to have pneumonia which always is hard on her little body due to her asthma, lung cyst, obstructive sleep apnea, and history of atelectasis. By this time, Jaycee was on oxygen and waiting for the Children's hospital to send their ambulance.

Fast forward... Jaycee landed in the Pediatric Intensive Care Unit because her oxygen requirement was so great. Her blood pressure was very low and a couple of liters of fluid were pushed in an attempt to keep it up.  Her vitals were all low or high and there was some real concern she was in shock.

I hate the ICU. I mean no one loves it, but it does a number on me emotionally. But I know that Jaycee hates it much more than me. I have a short health history I keep of Jaycee in my purse for emergencies like this, but it is lacking some details. I can say that this illness makes at least 8 admissions into the ICU for some sort of respiratory problem.

The positives about being there a few times is that you learn the ropes. You know what alarms and beeps to be worried about and when they are nothing to be concerned about. You learn your child's vital signs and know when to be worried and when to be very very worried. You know what the parameters are for needing more support with breathing and less. This knowledge makes some things easier because the first time Jaycee was in ICU back in 2011 for pneumonia, I was completely freaked out just because she was in there. I sat and cried and worried and she recovered just fine. Now, I know when it is truly a time to freak out.

Since 2011, she has been on a ventilator twice, spent both weeks and days in ICU, been on bi-pap support continuously, and been near death once while battling septic shock.  I have seen my daughter with art lines, central lines, picc lines, feeding tubes, cathed, suctioned, and medically drugged. I have felt fear like never before in that place.

Every time we leave ICU, there is a part of me that goes on with life. There is a small part of me that wants to never think about or deal with those demons we faced in that beautiful and terrifying place.

It is a place of miracles and victories and relief for families. It is also a place where some spend their   final moments. These souls shake the nerves of everyone around because you want to believe that no child ever dies and everyone has a happy ending. But some don't... And after seeing that play out for other families that scenario is trapped in a far corner of my mind that tries to come forward during Jaycee's distresses. I am aware of that possibility but I spend most of her illnesses thinking my daughter is invincible. I fear that fate that some have met because I know my child's health isn't perfect.

When Jaycee is in ICU, old demons resurface. When I walk past certain rooms that Jaycee once occupied and old memories flood back. The ones I try to forget. The ones that involve rapid responses and machines and fast paced intervention. I see doctors who broke bad news to me and prepared me for the worst. They spark memories too.

The times in the ICU have shaped me into the mother and person that I am. I have seen and heard things no one wants to be part of. I try to forget all the bad and focus on the good....that Jaycee made it. That she lived through it. That she got her miracle and healing. And I TRY not to let those ICU experiences affect our life once we leave. Sometimes they resurface in nightmares or in body tension on routine appointments in the hospital. They are there even if I don't want to admit it.

But then it all comes back. As we stepped into that all familiar unit last week, I wondered what hell Jaycee was in store for this admission. I worked hard to ignore the chaos around us, the memories trying to torment me with worry, and the fear this place brings. I fought a different battle than my daughter. Pneumonia was her enemy. Fear was mine. Hers will have a beginning and ending, but I fear mine never really ends, just hiding below out of my mind's forefront.

Tonight, I am more relaxed though. Her miracle came again. We left ICU today and moved down the hall to the pulmonary wing. Her recovery will continue for awhile but the danger is behind us. Her weak lungs found strength another time. Hopefully forever....