April 21st, 2013

Sunday
Unit 1
Weight 14.9 Kg (gain due to increase fluid)
Nurses Nicole/Beki

Welcome home!



Late yesterday afternoon (Saturday), in PICU, the doctors thought you were stable enough to send us back to Oncology, Unit 1.  After giving you one more bolis of fluid to make sure circulation was ok we could be moved back to Unit 1. The "quick" bolis actually took us till 6:00 pm to get the conformation the docs were happy with.  The resident came back and explained that things were just a little nuts, but to rest assure we would get over soon and then again delayed while the nurses did a shift change.  Mom and Auntie Tannis had gone out for supper and get you fish sticks (another request from you) and Uncle Dustin stayed to help me get you moved.  Side note: Uncle Dusty and Auntie Tannis came Saturday to help out and are staying until Sunday.

At 8:00 pm, Dee the ICU nurse, helped us get you back to Unit 1 and its great to be "home." The nurses there were all excited to see you too.  We were settled right away, the nurses said the nights priority was to get you to sleep. They had the evening doc ready to do a quick evaluation, the nurses did vitals and then we all worked to settle you in to go to sleep.  Everything seemed to be going back to routine except for one big change for me, you wanted nothing to do with me, its was all about Uncle Dustin, how quick you lost trust haha.  You had to sit in the chair with Uncle, you had to have him vacuum out your mouth, he had to pick out your snack and then hold your hand while you went to sleep.  After you settle, Uncle went to join Auntie and Mom at RMH to get some sleep.

The night is like heaven back in Unit 1, we both get a much needed sleep with very little disruption.  I wake up well rested and ready for a new day, you, however, wake still needing more sleep and I'm sure the pain is still wearing on you and the steroids making you hungry don't help.  Uncle Dustin is by early to see you and you gravitate to him right away again.  Not long after you mom and Auntie arrive and I take off to RMH for my shower, a little extra rest and some groceries, as your mom is headed home today. 

You spend the morning sleeping on Auntie in the chair, but are still pretty irritated.  At noon, I came back to the room and your mood quickly changed.....for the worse haha.  You seem quite content with your mom and Aunt and I'm starting to think one of them may have to stay and I can go back to the Hat.  Mom and Auntie leave and you and I get back to routine.  You ask for every snack in the place and want none other than chocolate milk.  They say anything you eat with the mouth sores you will never eat again in life, so much for chocolate milk and ice cream sandwiches.  After a quick snack, you settle in for a nap, the nurses keep weaning you off oxygen so we can take the nose prongs out and by 4:00 pm you are just on blow bye (hose blowing oxygen towards you face).  This allows you to sleep even better, you start to snore and reduce the sleep deficit.

Even though you are sleeping we can still see the mucisitis is bad.  Your throat is swollen and so sore you didn't eat much today.  You are also getting puffy again in your hands, feet, face and pelvis.  They give you some medicine to try and pull all the fluids together so that your body can get rid of them.  The meds seems slow acting but we don't want more to help it just yet, we will wait till the morning to give another dose.  As usual, we are trying to fight so many side effects at once its hard to tell if we are getting anywhere making you comfortable.  But tomorrow is another day, another challenge and I'm sure somewhere there will be another small victory.

You are my hero as always,

Dad

Here is a picture of you finally resting peacefully with Auntie Tannis.