Its now 5pm Saturday night. Its a beautiful sunny hot day near the end of August. We should be having a family dinner together. Maybe some BBQ and some cool drinks. Nylah would be throwing her food on the floor and saying 'NO' to something. Nevan would be munching away slowly at the only thing on his plate he even remotely liked. Ah the good ole days...
Kidding aside today is not what we expected. I just got home from a night stay with nevan at the hospital. The day went okay considering neither of us slept. He then napped the entire morning away to make up for it. His mood is awesome though. He is happy and joking and making light of the situation now. He ate noodles for breakfast, noodles for lunch, a KITKAT for snack and I'm sure Mommy will make a nice batch of her world famous........Mr Noodles pack for dinner.
His health could be better. We are already upset that his one night stay was not exactly the truth. He now is scheduled to be in hospital until Monday the earliest to clear him of the methotrexate. Thats yet another word I no longer need to spell check... As of this evening we have a new set of problems to clear as well. Nevans temperature has risen, his heart rate up and has just been sent for a chest xray. He has had a nasty cough for days now. This cough is made worse by the NG tube down his throat. Dr's are now trying to rule out the cause of this cough. His heart rate and temperature change may be a result of an infection in his well sealed PICC line entry point. Perhaps it's been sealed too long and is rebelling with a skin infection. We would love to get rid of his PICC line and replace with a PORT (not a well aged cooking sherry found in my collection) but there are other factors at play still that may not make that option safe. We should have some answers in the coming days on all of this. In the mean time Nevan is enjoying his relaxing stay in a private room with his own TV.
Funny story of the day;
the nurse comes in with a syringe the size of a turkey bastor.
I ask what it is.
nurse; "it's his glutamin for the day mixed with water, it is 60ml "
me; "where does that go?"
nurse; "his NG tube"
me; theres no way your giving him that on top of the feedings he's had and having right now. Plus he's drinking and eating noodles. I'll mix it with water or juice or his yogurt for later."
nurse; " oh okay that's fine, ya that is kind of a lot."
I show nevan the syringe and tell him he needs to drink more or they will have to push that syringe through his tubby everyday. Later in the day I notice he's drinking his juice with glutamin 10 times faster than usual. I ask why he's drinking so fast. He says " I don't want the big needle put in me"...I have the image from a cartoon from the 50's of coyote being chased by someone with a giant syringe. Nevan makes me laugh constantly..
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