The Summer that Changed Everything

The Summer that Changed Everything

On June 17th 2012, Madison got on the ambulance and was transported to Primary children's medical center for a cardiac consultation to see if they could help resolve her pulmonary hypertension and possible fix her PDA.  The photo was taken of Madison just after we arrived at Primary around 12:30pm and she took what would be her last bottle feeding ever.  I rocked her to sleep and laid her in her bed.  The nurse who had admitted us was named Earl, he became concerned when her oxygen needs started going up.  It was decided she was stressed from the transfer and to give her some time.  

After shift change at 6:30pm Madison was still needing more oxygen and becoming more irritable she also had a croupy cough so the Nurse Practitioner and the attending Neonatologist decided to run a respiratory panel.  It came back positive for Rhino virus (the common cold).  Madison was moved to isolation in order to protect the other children in the unit and things continued.  We were waiting to talk with cardiology in the morning.  As the night progressed Madison became more and more ill, she pulled her oxygen off and desated into the forties within minutes something she had not done in months.  I was scared!!!!!!  Finally after several hours Madison went to sleep so around midnight I went to try and sleep in my car for a few minutes.  Four hours later I received a call from the nurse practitioner, Madison was not doing well and they were having to in abate her.  She needed to go back on the vent.  

I was devastated I ran back into the hospital, in time to give her a kiss before the sedation completely knocked her out and then I was asked to step out of the room.  I have never been more upset, my first instinct was to blame the staff at Primary Children's, obviously they did not know how hard it had been to get her off the vent and they did not know what they were doing.  That is a lesson I learned, blaming the medical staff that is saving your child's life may seem the easiest solution but it will not make the situation any better. 

In less then twenty four hours my baby had gone all the way back to square one and we were not even done going backwards.  Everything had changed!! Prior to June 17 I had never been afraid of losing Madison for real, I mean I understood what was happening but it had never been an option for her not to come home.  But here was my baby fighting for her life because of a cold, she went from seven to ten pounds almost over night, she was off feedings and had to have two pick lines and a central line placed in order to receive medications to keep her alive.  She switched back to the oscillator and then onto what is called the Brocotron, before her saturation level was stable.  

She went into early heart failure because of the pressures in her heart her kidneys stopped functioning properly and she had to have a urine catheter placed to keep her from going into kidney failure.  Her veins were so collapsed it took seven hours of trying in two days to get a pick line they even shaved a small place on her head to try and place a pick line.
She also required large doses of steroids in order to keep her lungs dry enough.






 She was on more medication then I could count and she had to be completely sedated in order to keep her form pulling her tubes out or hurting herself.  she was also fed completely through iv fluids.

This other picture is of the Brocotron machine that finally helped Madison to Breath better.

But there were good times to, I learned a lot and made so many friends.  I had no idea how much I was going to need them in the coming months but apparently God new.  Throughout the rest of June and July we fought through Rhino virus and then the recovery, and then we started to see the impact the virus had on her little body.  I think I knew then she would never be the same, she would never eat from a bottle again and she had a long road ahead but she was still here and for that I was forever grateful.   On July 17th after a month we were able to dress her again, and on the 22nd I finally got to hold her again

At the end of July we were moved from the isolation room to bed 48 and we joined the Karp team.  The Karp team is a special team designed for long term NICU babies, the nursing is a bit more consistence and instead of having a different NNP every day we have two who take turns so the care is more consistent and we can make a long term plan.  At the time we moved to the team Madison was the third oldest baby in NICU and we were looking at several months of treatment before she could go home.