Sunday, May 1, 2011

#5 Just Breathe...

3/19/2011

My hands-free connector for my phone became my best friend on those drives back and forth to Inova.  While I would drive I would talk to friends and family who would help keep my mind occupied with facts and details, which was much easier to handle than the emotional element.  Jason and I had no idea how long we would be at Inova while Hayley was recovering.  Before and after the first surgery, I was told that Hayley would be there for weeks and that afterwards she would have to go to a rehabilitation center.  We knew we were in for the long haul.

Inova is a huge hospital with a totally confusing layout with color coded elevators that don’t lead to the same floors that are in other buildings.  Trauma ICU is tucked away behind camouflaged doors that no one would guess where they led.  Getting in is a chore.  First, we used the intercom, waited for someone at the desk to answer, and then they would check with the nurse before we were allowed to come in.  They quickly got used to us simply saying, “its Hayley’s mom” or “its Hayley’s dad” and then buzzing us in.  All the patient rooms in ICU were set up in a circular manner.  Standing in any location, you can see all the rooms and the main desk in the middle.

My routine when coming into ICU was to check Hayley’s vitals, sit by her side and hold her hand.  The nurses became used to my relentless rapid-fire questions; “Why is her temperature so high and her blood pressure so low.  Is she peeing enough? What is that tube for??”  The nurses were accommodating to my incessant questioning and they normally always had the answer and would explain in a way I understood.  Seeing Hayley this particular morning was rather alarming.  She had swelled to a point that I hardly recognized her.  Her skin was so tight and warm to my touch.  It was explained that the swelling was normal, that it was how the body responds to such a traumatic injury.

I was so glad Hayley couldn’t see herself at that moment but I let myself imagine the conversation and the slue of complaints that would come out of her mouth about looking like hell.  But, she couldn’t fight back right now, all she could do was lay there with her hands strapped down while a machine breathed for her and all I could do was hold her hand and stare at her vitals.  I longed to hear her voice, for her to grasp my hand. 

The nurses monitored her constantly which gave me easy access to ask my never-ending questions.  Every now and then, Hayley would open her eyes and try to tug on her breathing tube.  I was so grateful the drugs would quickly let her slip back into her dream place and I was more than thankful to know she would not remember one second of what she was going through, but I remember and her father remembers.

After hours of watching her vitals, the doctor came over to talk to us about her surgery the next day.  She said Hayley would be taken at anytime, there was no set time, just when they could get her in.  She explained what they would do and that afterwards if everything looked good, they would try to take her off the breathing tube.  I couldn’t wait to hear my daughter’s voice.
Once the nurses realized we had such a long drive they arranged for us to stay in one of the rooms in the children’s oncology wards on the 6th floor.  Being as late as it was, Jason and I decided to try to get some sleep.  As we walked through the ward, there were two young boys playing in the hall.  They both had masks on their faces and I assumed they were battling cancer.  I thought to myself that as bad as things were with Hayley, they still could be worse.  I empathized with those mothers and hurt for my sister who has a child with cancer.  How lucky I felt and I counted my blessings.

I couldn't sleep, so I sat on the ledge in front of the huge window, with my forehead against the cold glass.  I was anxious for the next day’s surgery.  I knew they had a major repair to her fascia and hoped that when they checked all the repairs done to her intestines that they wouldn’t find anything bad.  They had already told me her muscles were detached and they were hoping to be able to incorporate some of the muscle tissue into the repair.  I imagined what it would be like for Hayley without the use of her abdomen muscles, about how it would affect her life. These thoughts and more churned through my mind as I looked out the window into the darkness.  

3/20/2011

We didn’t wait for the sun to rise before we were packed and ready to head back to ICU.  We decided to walk around the outside of the building to the lot where my car was to drop off our bags.  It was the night of the “super” moon.  It was very bright and large and brilliant.  I stared at it as I walked and prayed this day would go well, that Hayley’s surgery would be successful and that I could keep it together.  He answered my first two prayers.

Hayley went into surgery around .  In preparation, they had installed a central line.  They explained with all the drugs, fluids, and now another unit of blood, that it would be easier, that the needle was large and everything would get into her quicker.  They were then able to take out all the smaller IV’s that she had in both arms.  When it was time to go, all the excitement and movement stirred Hayley.  She was alert, but I knew she had no clue what was going on.  We walked with the crew as they wheeled Hayley to surgery.  At the doors, I kissed my daughter, gave me love, looked into her eyes and prayed I would see them again.  When the doors closed, the sobs came strong and hard.

Hayley was in surgery around 3 hours.  Back in ICU, the doctors explained how everything went.  They had a hard time closing the fascia and ended up using the largest piece of pig mesh they had ever used before.  It was decided that they would not try to take Hayley off the breathing tube tonight.  Her body had been through enough and she needed the rest.  They planned to try to take the tube out first thing in the morning.

We stayed for a couple hours; made sure she was resting well and headed to go get Dani.

3/21/2011

The plan was to put Dani on the bus and get back to Inova.  A friend had offered to keep Dani for us and make sure she got to school.  Unfortunately, lack of sleep caught up with me and after falling asleep at , my body did not hear the alarm at .  I ended up not waking up until in a mad rush. I wanted to be there when they took Hayley’s breathing tube out, so we didn’t even pack a bag, just got ready and left quickly. We got Danica to school on time, but had to talk with the principle to let her know what the arrangements were with Dani.

We didn’t get back to Inova until close to 11; freaking traffic!  When we got there, they explain that they tried and aborted the breathing test.  Before they actually take a breathing tube out, they run a test for two hours to see if the patient is breathing deep enough.  Hayley failed and the test was called off within 45 minutes.  My heart sank as I realized how much her fragile body must have been going through.  They said they would try again later if she was up to it, but as it turned out Hayley was not ready.  Her blood pressure kept dipping low around 30’s over 90’s.  I spent the day freaking out every time the alarms would go off on her vital monitor.  Her temperature stayed around 102. 

Well before they tried the breathing test, they had begun to cut Hayley’s medication doses by half.  They explained she wouldn’t breathe on her own at the level of Fentanyl and Versad she was at.  As the medication levels started to leave her system, her alertness happened more often.  I began to see that Hayley was not aware of how sick she was because she was pissed!  She didn’t want to be strapped down and she tugged with what little energy she had to get to her breathing tube to pull it out.  We kept an eye on her all day and she tried with all her might to communicate with us.  As mad as she was, I was elated!  My daughter was back and acting like her strong-willed, stubborn self, but the drugs kept her from understanding what she had gone through.  There was no explaining to her that all the tubes and wires were necessary, she wanted that tube out more than anything.  These moments were brief and she mostly stayed under, but I could feel the heaviness lifting off my chest and I began to breathe again.   

I was told of prayer-chains and prayer-blankets that were coming in from all over the U.S. and as far away as California.  I don’t think Hayley had much of a chance, her injuries and situation were being given to God and he had put her near the top of his agenda.  While she slept, He worked miracles on her body that no one expected; not me, not her supporters and not even her doctors.  His greatness would be shown more and more in the days following.