Beads of Courage

So this past clinic visit was the first one that I was not able to attend. It was a bit tough to be at work all morning and wonder how things were going. Luckily for me my work day goes by so fast that before I knew it, it was lunch and P.J. had finished up at the hospital. A quick three hour clinic, that might be a record! I was able to get an update from P.J. on my lunch break and hear the answers to all the questions I had sent with him to ask. I was a bit worried about Nash's belly size...seriously, it's huge! They agreed that it is large but not hard so all is well. I guess he's just chubby, weighing in at almost 24lbs! (80th percentile for weight!!!) I was also curious to hear about the ultrasound results and if his liver enzymes were still showing as being a bit high and if so, what that meant.

The ultrasound did show what they expected, that Nash would need to start on a new medication for his liver. I was a bit stressed to hear about the new medication but was told that it was pretty standard for CF patients to be taking it. The new medication is called Ursodial or "Urso" and from the information sheet that P.J. brought home my understanding is that in CF patients there is a malfunctioning protein that causes salt and water imbalance. This can cause bile to become think, the flow of bile becomes slower and a blockage can occur which can then cause damage to the liver. The Urso acts like a cleanser and he will have regular ultrasounds and blood work to continue monitoring his liver.

Our problem this week is that every time we try to give him the Urso he projectile vomits. I called Clinic to see if this could be some type of reaction but apparently it's just that gross that he's making himself sick. Awesome. So, it's been a stressful week with the physio battle every night and trying to get him to take this new medication. He's also learned how to spit so when we try to give him the Aquadeks that he's on (which stains bright orange) he spits it out. This is the stuff he use to suck back as a newborn. Guess he's now figured out that it's disgusting.

One thing that was new at this clinic visit is that Nash has received his necklace for "Beads of Courage". This program runs in many Children's Hospitals across Canada and the US but is new to the Alberta Children's. Each time a patient has a procedure, admittance, clinic visit etc. they receive a new bead in representation.