Unit 1
Weight: 13.0 kg
Nurses: Christina/Amy
And we are back down...
I arrived at RMH last night at around 9:00 pm. You were already sleeping but seemed a bit unsettled. I decided to come up last night because you had an appointment this morning at 10:00 am with Lindsey, our primary nurse and Dr. Anderson. We were hoping with that we might be able to pack up and head home for awhile as you have handled your side effects well so far. You do have some mouth sores as well as bum sores, but dad has been using creams and rinses to keep the sores manageable.
During the night, dad was taking your temperature and you started to run a fever. He also noticed that your pillow was soaked because of your drool. The drool is a sign that the mouth sore could be getting worse and you are not swallowing due to the pain. Dad called the Oncologist on call and she said to bring you in to be assessed. We got you ready and I drove you and dad over to the hospital at 5:00 am. They gave you some Tylenol for your fever and some Morphine for the pain.
When I made it back to the hospital this morning, after a necessary Tim's run, you were in "okay" spirits but having troubles eating and drinking. It is obvious that this hurts your mouth. You also have a nose bleed that is difficult to stop. Dad ended up pinching your nose for 5 minutes to try to get the blood to clot. Your platelets are at 23 so they are contemplating a blood transfusion. Your heart rate is a little high and you feel cold. Amy suspects that you will need a blood transfusion to boost your red blood cells too. They are also giving you some fluid to help lower your HR. You spend your time watching TV and playing on the iPad. You get upset because you are hungry but everything hurts in your mouth.
You do finally have a blood transfusion by early afternoon. They APT is following you again to help manage your pain. It is so difficult to see you in so much pain again. This happened so quickly and I don't think your dad or I were ready to deal with this so suddenly. You are still on Morphine and it is on a PCA again, where your dad or I can control the amount of pain meds you get. This is very difficult as we don't really know how much pain you are in and we don't want to sedate you. It is a constant struggle and the doc and nurses rely on our input when it comes to your pain level.
You do manage to eat a small piece of cheese and one digestive cookie; however, you can tell it is very painful trying to get the food down. As the day continues you are visibly in more pain and your spirit is deflated. You spend some of the time sleeping but when you are awake you cry out for dad or I and just want someone to lay and sit with you. It kills me to see you in pain. I know that we have done this before, we all knew this could happen again but I just wanted it to be better this time. There was a bit of hope that this would be easier on you this time and we were just living on that little bit of hope. I just pray that the pain is controlled enough for you and that you don't have to suffer.
Love you to the moon and back,
Mom
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