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One Long Day

2/25/2012

4 Comments

 
Dawn
 
It is a new dawn and the sun is shining.  Outside our window I have a view of a rather ugly building, and a patch of perfectly blue sky with puffy white clouds.  When I was working with my father one summer he told me that as a kid he called these clouds, “big puffers”.  Ever since then I think of them as big puffers.  *smiles*
 
Our day started early, with Zoë waking up at 4 in the morning.  She was uncomfortable and we found out why shortly when she had a big poop.  I promise I will not talk about her poops… much… but this poop is a big deal. 
It was the first one post-surgery which means that her bowels are functioning. Once she was changed up she calmed down.
  
This afternoon her dressing on her epidural failed. So it had to be removed to insure that she did not get an infection.  It is quite a setback to have lost this line because now she can feel her abdomen and legs. Her Pain
Management Team was hoping that she would have this line for about five days.  So instead she is now on
morphine (a drip, and a nurse assisted push).  She is pretty much OK, but there are times when she is moved and she screams out in pain. 
   
Zoë is being very much herself, and has refused to nap most of the day.  At one point she was on the epidural, Tylenol, Valium, Ativan, and anti-itch meds, and she was still awake!
 
So Zoë is down a few lines, the Arterial line is out, and she has an IV in one foot that is failing, so that should be removed soon. She will also have the tube that was is in her nose removed soon, because she does not need her stomach drained anymore.  We are just waiting for the go ahead from the surgery team who is in charge of her at the moment.
 
High Noon
 
I managed to go for a walk just after I ate lunch and I got to graffiti Zoë’s name on a steel beam that will be going into the new addition here at Children’s.  *Smiles*
 
Dusk
 
The big news of the day is that Zoë has been moved out of the ICU!!  So we are back on 6 East.  Our home away from home.  All of the nurses are so very excited that we are back.  I am excited to be back.
 
At the moment she is doing her best to try to fall asleep, but we are sharing a room, and I think she is not used to the noise of a TV.  During all of Zoë time in the hospital to include even the short stay when she was born we have had the TV on three times.  Two football games, and the Super Bowl.  So needless to say the television is not a common noise for Zoë.
 
It is also a huge annoyance for me.  I have no desire to watch television.  My spare time I spend writing, or working on Zoë’s website. I upload pictures, read, or listen to music, and just have some quite time.  Now I am doing my best to block out the noise of loud stupid television shows, and even louder and more annoying commercials. Zeppo and I got rid of our cable, since we are not really there to watch anyway, and I have to say 2 weeks at home without TV was not bad at all either.
 
Zoë is having a very difficult night.  She wants nothing more to settle down and sleep, however she is awakened by belly pain.  Mostly caused by what we think are gas pains.  An x-ray was taken around 9:30 and hopefully we will know more sooner. Zoë is back on suction…boo (good thing they did not pull the tube out of her nose).  The drain in her incision was also blocked a bit, and was cleaned. Once doing that a LOT of fluid has come out of her abdomen.  The IV in her right foot was also removed.  So she is down to just one IV now in her left foot.  She is laying in bed looking up at a “Get Well Soon” balloon that her birthday twin Sarah sent her, (Thank you Sarah!). Zeppo is leaning over her to try to get her to sleep….or keep her awake by making popping noises with his mouth, and taking pictures of her with his loud camera.
 
Tonight will be a very LONG night.  Her incision dressing needs to be changed due to leakage, so that will surely get her screaming.  
   
I told her nurse tonight that the only reason why she is having issues is because she left ICU.  She wanted to be the center of attention on the 6th floor. Poor nurses probably thought they were going to have an easy night tonight too with Zoë since she normally sleeps through the night.
 
I am off to lay down I hope for at least a half an hour before dressing change happens…
 
Love and Hugs from CHB!
 
P.S. Dressing change accomplished… before I got to lay down…  I have the feeling this very long day will only get longer, and longer...

Here is the grafiti. 
Picture
4 Comments
Sarah
2/25/2012 11:47:33 am

I'm serious about the getting well soon! <3 birthday twins!!!

Reply
Lizz
2/25/2012 11:51:37 am

Hang in there Zoe! You, mommy and daddy arr doing great! Keep making those strides!

Reply
Amy Dame
2/25/2012 09:44:57 pm

Keep fighting little one - you're doing good!

Reply
Bill from UDC
2/26/2012 11:09:56 am

What strength and courage you and Zeppo have!! I've been thru major surgerys with my son at age 5, tubes coming out of his scull and all other part of his body, 11 surgerys in all over 1 1/2 years. It doesn't compare to what you three are going thru, she is so young and beautiful. Thanksing God she has such great parents to stand by her thru all this. Will continue to pray till she is out of the hospital and resting well at home.

Reply



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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.