Monday, December 10, 2012


This is my feelings and observations of the past week.
20 minutes before I handed her off to surgery

When I saw Cecilia for the first time post Glenn, I exhaled relief.  There was once upon a time I cried myself to sleep not knowing if my baby would ever come home... ever see outside...there was a time I cried I did not know if my baby would ever open her eyes and look into mine and know that she has a mother...there was so much we have been through and she made it through it all!  We made it through the scariest time of her condition. She rocked it! ♥

 She did not look exactly like my Cecilia, but I expected her to be swollen.  It was weird, Karl and I both saw her, and we saw Sophia in her (her big sister).  Katie was taking care of her, who is a nurse that has had her the most often over any other nurse there.  I think of her as a family member to Cecilia.  Cecilia was waking up already!   Her body was trembling.  I thought she is in pain :(  The more she would wake up, she just went crazy.  Another nurse came in to help draw up meds for Katie.   I thought that this pain meds are not working at all!  She had a fever, and her blood pressures were too high, then too low.  They broke her fever, and I know she got Albumin atleast once.  Her labs looked good.

 tied to the bed so she doesnt hurt herself during her fits

Next day I heard she has hazy lungs, so (and the next few days from here on) were to get fluid off by administering diuretics.  Cecilia was having serious trouble staying comfortable.  She was a baby in pain and distress thrashing her body around crazy.   She started to get blood tinged urine which the thought was her bladder had some trauma from the foley.  She was extubated.

My favorite person in the PICU, Marissa from child life, gave us some goodies for us to bring home to our other daughters at home.

We changed rooms, and they started her feeds.
a rose from Sarah
headband from Christine

I was on an emotional high.

Later in the night, her nurse said that her central line seemed wet, but it had good blood return and flushed well.  Cecilia got a blood transfusion and it did not leak blood during it.   Sometime later, the dressing was bloody though.   She said she will wait for the NP to get in so that instead to describe the dressing to her, she can see it for herself, and she was expected to be arriving shortly.  I went home to shower, and I got a call from the NP that one of Cecilia's chest tubes was looking milky,  This is an indicator of Chylothorax, so they would change her formula to Enfaport.  Shortly after I came back I noticed Cecilia was extremely soaked and her nurse soon changed her bedding.   I assumed it was sweat at first, but that just didnt seem right because she did not look sweaty and her hair was dry.  Her nurse later noticed that her central line was saturated, and so he and a couple of other nurses changed the dressing for the first of many times this day.  I was across the room so I did not see it well, but it was a little red from what I could see.  He talked about maybe it got irritated from the prep you have to use to change the line from earlier.  I swear I heard another nurse say, "Does that look yeasty?"...Cecilia has had 2 central line infections in her blood before, so I already had a bad feeling.  They couldnt even get 1 tegaderm to stick to her skin, and so they layered dressing the best they could.  I wished I would have spoken up and demanded it to be investigated.  I made myself trust that it would be handled appropriately and in a proactive fashion.  I always follow my gut and I didnt this time because my journey at this hospital is always me or my husband complaining about our daughters care.  It leaves me so uncomfortable everytime I have a problem with them.  An hour after shift change, the nurse had to change the dressing again because it was already wet and it was not looking secure.  She kept looking at it, and she thought they will definitely pull the line out in the morning.  She said what the other nurses have said, "it flushes fine"...I really thought everything was going to be ok because Cecilia looked good, other then some irritation on her face from her rubbing it.  She was finally able to sleep.  I went to sleep.

They talked about the line at morning rounds.  They mostly talked about how to save the line.  Her RN wanted the NP to be with her when she changed the dressing, and so it was  said that sounds like a plan, and we will pull 2 out of the 3 chest tubes with it.

When they undressed the central line it was caked with what they described as yeast.  They drew some blood from the line to be sent off for testing, thoroughly cleaned it, and then pulled the line out.  Her neck was very raw.  They put some Nystatin powder on it

 I dont have any pictures of it from what it looked like when it was pulled

 "It's just a rash" is what I told myself over and over...I felt like in denial, that this is all just a little bump in recovery and Cecilia is doing good, actually she is doing great!  Her monitors looked fantastic!  Her HR had been 90-100ish all day, which is a huge difference then her Interstage baseline.  Her RR was in the teens and 20's.  Her Renal NIRS were in the 70-80's...  I felt so good about Cecilia's recovery that I actually went home to sleep in my own bed that night.  I returned around 9 am.  The first thing I looked at from the doorway is my sleeping baby I love so much.  I looked at the monitors.  Cecilia's HR was 140's, NIRS in 50's, and RR 40's.  The next thing I checked was her oxygen/flow because she was on as high as 60% and 3 liters.  I saw it had been weaned and I figured her body was just adjusting to the weans...Then I looked at her face.  She looks like herself again!  I got close up to her in the barely lighted room.  She wasnt puffy anymore.  But her neck...Ugh her neck!!!!!!!!! :(  It looked so bad!  It looked so painful!  It looked worse to me!

I went to find the doctor and she said it actually looked better to her because we want it to dry up.  It was cracked and bleeding in the creases of her neck.  Her nurse was tending to it and she wanted to put some ointment on it.  I was incredibly concerned about her neck.  Inside I was freaking out, but I was keeping my cool.  Everything about the situation was so concerning to me...recently post op and all!  Her nurse was giving her antibiotics, but it was given through her Gtube.  I wondered why haven't any specialists been involved!   When I later saw the NP  I confronted her on this and she mentioned there is no wound care doctor until Monday so she hasn't called any specialists.  My friend Tiffanie came to visit.  It was a long time since we have seen each other.  I missed her...  Everytime a doctor or nurse came in the room I observe their reactions to her neck.  Certain nurses are the only ones that looked at her with any compassion.  Her main Cardiologist was just full of smiles about how well Cecilia is doing, not really acknowledging her neck.  Nobody is going to ever stick up for my child but me I guess.  I was waiting for it to happen and it never came.  It felt like everyone is shrugging this neck thing off completely likes its nothing.  She just had open heart surgery!  Any infection in her blood could kill anybody, and she is so vulnerable right now!  Cecilia was acting funny.  Tossing and turning, but in a much more weak way.  Her nurse was checking her temperature often.  Cecilia felt warm to us, but the number on the thermometer kept reading OK.  She looked at the wound often.  She noticed it is looking worse.  I agreed!

 I felt like the tension in the air between me and her nurse was waiting for something really bad to go down... and she didn't have to say she was worried, I could sense it.  She had not had hardly any urine output the whole day.  Then Cecilia projectile vomited.  As we were cleaning her up, Doctors came.  I feel like everything got much worse rapidly.  They decided to rectal temp instead and it read she actually did have a fever.  Now they called specialists once this was confirmed.  I tried to look at the monitors often, but I couldn't take my eyes off of her and her neck.  I didn't like the way she was breathing.  She was working so much harder.  I saw her HR was 180 and climbing, everything else was on alarm (her blood pressure, her sats, and RR).  Her NIRS I saw had now dropped into the teens.  She was out of it and lethargic.  I think she was in and out of consciousness.  They soon put her on IV antibiotics.  After ID left, someone from plastic surgery came.  He said he wanted to clean it and it just broke my heart.  She has just had the day from hell.  I cringed at the pain it will bring her.  I had to leave and as I stood up he looked me in the eye without any ounce of compassion and said "Mom, when this heals there will most likely be a scar".

 improvement from 2 hours later after the Infectious Disease and plastics saw her

Next day
Night shift was finally a completely different atmosphere.  For the first time my daughter was examined and I felt like somebody cared how much this sucked for her to be going through.

I hate this.  I hate this place. I want to scream at everybody.   Over the next day I cried and yelled and called people out.  I got to the point I dont even want to say another word to anybody there.  Leave Me Alone.  I am team Cecilia and it doesnt feel like they are.  They are the people that are supposed to save her life and give her a chance of life...The worst part is I like most of them, I even love a lot of them!   And I feel like they just spit all over my baby.  I wanted them to be great, but they keep letting me down.   Karl has been with Cecilia.  He says I have to come back and give him a break.  I dont want to go.  I've been inconsolable at home.  I am so angry and hurt.  I need my baby to get better.  The day I met her surgeon I began to believe my daughter was going to have a great quality of life.  I dont feel like she has at all.  

This is my feelings.