Day 1 Post Surgery

   
    Charlotte's had an up and down day.  She did not sleep great last night.  Around 8:00 last night we noticed that she had a bit of a fever and her amazing nurses were able to give her some Tylenol and some antibiotics to get the fever down quickly.  Charlotte's urine output was not great overnight and they were trying to decide if they should give her some medicine or some fluids.  The nurses were able to give her some medicine that helps with urine output and this was able to help.  Charlotte has an epidural catheter in her back that can effect urine output which is what the medicine was given to help with.  Currently she is now on fluids.  She has also been given Tylenol for the pain that they think is coming from where they placed her MedPort. Charlotte's epidural helps with pain on her lower half of her body however the MedPort is located up on her right side just under her clavicle.  As mentioned in the previous posts the MedPort is where she will be receiving all of her medicine including her chemo.  Her oncologist, came to visit us early this morning.  He did not have any updates for us this morning, however he did want Charlotte to be seen by an ophthalmologist to have her look at her eye for any concerns that he thinks could push up chemo starting.   The nurses came and dilated Charlotte's eyes and then the ophthalmologist ran some tests to check for the neuroblastoma cells in her eye.  They wanted to see is there was any significant growth that could already be causing problems such as pressing on the eye, the orbital socket or the optic nerve.  The mass on the eye is what is leading us to be more aggressive with her treatment.  Often with neuroblastoma when it is found, especially with little ones, there is a possibility that the tumor can shrink and eventually turn into a ganglioneuroma, where the neuroblastoma essentially matures into benign scar tissue.  However, because she has neuroblastoma cells on her orbit they are concerned that any growth could put pressure on the eye or optic nerve.  Today the ophthalmologist did not see anything in her eyes that looked to be concern.  Her optic nerve was an appropriate color of a yellow/orange, the ophthalmologist was looking to make sure it wasn't a pale color. The ophthalmologist also didn't see anything floating in her eye or that her eyes didn't move on up or down or shake.  This was good news, we did not need to start chemo any earlier and we could let her heal from the surgery.  Charlotte has not had the best day, she has nursed a little and had some breast milk from a bottle, the most she has taken in one sitting was 58mls.  Charlotte has also not been happy unless she is being held.  Most of the day she has spent in someone arms and that is where she will sleep and is happiest.  She has enjoyed her mommy jumping around and dancing like a fool for her, that has been the one thing that has given us some smiles today.

Charlotte is 10 months old today and it is hard to believe how quickly the time has gone by.  We have already started to plan her first birthday and are so excited about it.  Charlotte loves her puppy, Jax.  She also loves playing paddy cake.  Charlotte crawls all around the house pulls herself up and is taking steps along the couch to the coffee table.  She loves bananas, apples, cheerios, steak and peanut butter.