July 20, 2012
Day -3 (3 days until the transplant)

Today I had the luxury of sleeping in late in my own bed.  What a treat to be able to sleep without being woken up by nurses or preposés.  Living at the hospital sure makes one appreciate the comfort of home.

The effects of the chemotherapy are starting to kick in.... irritability.... not eating.

She ate ¼ of an apple, a couple bites of toast, and a few swallows of water.

The nutritionists figure that by Monday or Tuesday she will have to have the feeding tube installed.  

She needs to maintaining a minimum level of calories and if she can’t do it on her own, it will be done for her.  

This will help her bounce back quicker.

There are so many things that need to be done to my little girl - many of the things are done by the nursing staff but we need to, or at least we have chosen to, do many things to help make this entire experience easier for Manue.

Medication by the mouth; depending on the day, up to 6 syringes.  Understandably, Manue will not take medication by the mouth willingly anymore.  

In order to give the medication, someone needs to hold her little arms so that she can’t hit the syringe away and her legs so that she can’t kick your arms away that are holding her arms.  Another person needs to take her chin and hold it such that it can’t move side to side while at the same time, slowly administer the medication.  

Not too fast otherwise she is just going to vomit it back up.

Mouth care; she will soon develop mucositis.  We’ve all experienced one or two in our mouths.  We know how painful they are.  Now, imagine them everywhere in your mouth, throat, digestive tract, and intestines.  The saving grace is that they will ONLY last seven to ten days.  Morphine will be adminstered as needed to help ease the pain.

Mouth hygiene is really important.  

So, three times a day, she needs to brush her teeth.  After she has brushed her teeth, we need to swab the inside of her cheeks with a giant q-tip soaked in a terrible tasting solution.  

Finally, we need to once again swab the inside of her cheeks with another giant q-tip soaked in another solution that definitely is not the taste of candy.

As you can imagine, she doesn’t want to open her mouth as easily as she used to.

We’ve worked so hard to ensure that she trusts us.

We always try to give her the choice but ultimately it needs to be done whether or not she wants to.

For a three year old, she is extremely strong.  You would think that something only weighing 13.4 kgs would be easy to manipulate but think again.  Not so easy.