Monday, January 13, 2014


4am my internal alarm went off and was ready to go to the hospital.  I sat up and contemplated getting ready and just heading over to Capris room.  Then I looked at my two other kids sleeping so peacefully, I wanted to tell them goodbye and make sure they were ready to get on the plane.  So I tossed and turned until 530 when my alarm went off and it was time to get up.  When I got to her room, the hospital was so quite it was a little surreal.  I combed Capris hair and kissed her forehead.  I painted her hand and made some posters of her tiny hand.  I keep going in and out of panic attacks.  Everything is fine and i feel prepared and then my chest tightens and I cant breathe.  I cant believe we are lifeflighting my baby.  This little tiny 10 pound girl who was smiling and flirting with nurses a week ago is now paralyzed and sedated, swollen from all the IV fluid with a breathing tube down her throat.  She doesn't even look like the same baby.

  As i was looking at Capri trying not to break down i felt an arm around my shoulder and turned to see our doctor from earlier in the week when we were in the CSU.  Seeing her brought me to tears.  When we were up there she made me feel so calm.  She would come to the room and hold Capri and we would just sit and talk like we were old friends.  She made me laugh when all i wanted to do was cry.  every once in awhile you meet someone at the hospital that just makes such a difference in your life.  And it wasn't like she did anything specific that i can pin point, she just.. i don't know, made a horrible situation not so horrible.  I was so glad she came to check in on us.

Lifeflight arrived and spent a few hours making sure everything was perfect and hooked up just the way it was supposed to be.  Michelle was one of our lifeflight nurses that took Capri the day she was born, and even though i don't know her it helped me to feel at peace because she was familiar.   We got to the ambulance, made it about 5 blocks down the road and then had to turn around because her nitrix machine wasn't working.  Another hospital lifeflighted a working machine over via helicopter and we finally made it to the airport.

When i was told we were going on a lifeflight i pictured a private jet with reclining chairs, a little mini fridge by my seat and then the back of the plane with a nice padded bed like area for Capri.  Apparently my imagination had gotten the best of me :)  It was a cold metal plane with a bench and 3 seats facing each other.  after stuffing all of the bags behind a gate in the back we all squeezed in to our seats.  Capri had a monitor that was swinging back and forth above her head, on by her stomach and one at the end of her cot.  There was medical equipment everywhere and it never stopped alarming.  30 minutes into the flight i was watching her oxygen dip into the low 80s high 70s.  I must have drifted off because Michelle told me she would give me her coat so i could lay my head down and rest.  This is the first time I have felt like i could sleep so i accepted her offer and fell fast asleep.  15 minutes later i was jolted awake by alarms and a whistling air sound.  i shot up and saw Michelle taking Capri off the vent and started to hand bag her.  I looked at her monitor and she was in the 60s.  Her face was white.  This kept happening for the first 2 hours of the flight.  Finally they decided they needed to suction her (we try to avoid that because it puts her in SVT).  After releasing a lot of secretions her oxygen went into the 90s and stayed there for the rest of the flight.

We got to mayo our lifeflight team debriefed the doctors there and headed out.  As soon as they left i noticed her heart rate was 140 and told the doctor that this is usually her SVT rate.  He told me she was just upset and that it wasn't SVT.  I watched it for a few more minutes and told him that no it really was her SVT.  He called cardiology down to get there opinion and sure enough i was right.  Times like this i really hate being right.  They gave her extra heart meds and told me that shocking her is not going to solve the problem.  It was only a temporary fix that makes her heart worse every time they do it.  Surgery is what she needs and they don't want to risk hurting her heart anymore so as long as her blood pressure was okay they would leave her in it.  By the time I left the room a few hours later she was still in SVT.  This is so different from primary childrens.  They wanted her out after 15 minutes.

Tomorrow we will meet with Capris surgeon and hopefully schedule it for wednesday.  My body is on overload so i cant even process that surgery is so soon.  I need sleep.  I am hoping that being here will help me to relax and maybe sleep through the night.