Jinxed

It's official. Dad is hereby declared as being jinxed when taking Oliver to the hospital without mum.

In an effort to let Karli have some time off today, I offered to take Oliver in to the hospital by myself. We briefly joked about my being jinxed, since both times I have done this before Oliver has returned with a cast, and then had to have his port removed. "Ha, ha," we spoke in jest. "What else could go wrong?" In order to break the suspense, in short, Oliver's port isn't working - again!

We got to the hospital parking area and headed off to get a coffee and some breakfast. Oliver amused himself with his toys and some crackers while I briefly flicked through the paper as I ate a bacon and egg sandwich and drank my coffee. We then headed in to the hospital. From then it started to go downhill. First we upset Oliver by putting some EMLA on his port site. EMLA is a topical anaesthetic cream that is used to numb the port site so it doesn't hurt when kids are needled. They don't use it on kids younger than 12 months because they are so upset at being held down that the stab hardly registers. But Oliver had seemed to be responding to being run through, so it was decided to put some EMLA on. We had also avoided it because usually it is kept in place by a piece of tegaderm, which causes much grief when coming off. We tried a different strategy of using a non-stick dressing with an elastic 'garter' thingy. Needless to say, taking Oliver's shirt off in the hospital usually results in a fair degree of complaint and protestation. Upset already and it was only 8.45am.

next I asked about bloodwork. In recent times all bloodsd have been done on the ward so the kids don't need to go near the building site next to the pathology lab. Lucky I asked.
"Haven't you gone yet?" "
"No. I haven't been given the form."
So up to pathology to have the boy's finger gored and milked of it's precious fluid. Fortunately we were the only ones in the waiting room.

Back down to the ward for my 9am appointment. Weight and length were taken - 12.05kg and 76.5cm ~ 50th and 5th percentile respectively. Then a walk to get the boy to snooze while we waited for the doctor to see us. At 10.10 I had an idea that EMLA is only supposed to be on for 1 hour, so I headed in to let a nurse know how long it had been, and hoped to remind them that I was still waiting to see a doctor. It worked, they got on to a doctor within the next 30 minutes. Then it was off to get needled.

Oliver wasn't happy about being held down, but he didn't seem to feel the needle. EMLA works apparently. Well, we couldn't get the port to bleed back - strange I thought, although I wasn't 100% happy with the way it was inserted and dressed. It was decided to give fluids to get it flowing before trying again.

The next 2 hours weren't a whole lot of fun. Oliver was very upset. Not happy in my arms, not happy in his pram, not happy with food, not happy to play. Makes for a bit of a stressful time, especially when you are ina room with 6 or so other patients. Nobody likes a screaming baby.

After an hour and a half I decided I'd had enough and unplugged his drip from the wall and went for a walk to the kitchen to heat up his lunch. Of course, he fell asleep by the time I had finished, bless him.

So I sat on the cot and rocked his pram in the same day care room. Some poor little soul started screaming after waking up from a GA. Fortunately the boy slept through it. When he woke up he seemed happy enough, so he sat and played while I gave him his luke-warm dinner. the nurses soon returned to check on him and prepare him for his chemo. Apparently they were having trouble in the chemo room, thus the long wait. Well, the boys port still didn't bleed back, he was none too pleased, and it seemed to be swollen around his port site. In fact, I'm certain I could feel the striations in his muscles - not normal for one so young. So the needle came out and a dressing was put on to soak up the fluid that was leaking out, and we trotted up to get an x-ray to check it all out. What a difference having the needle out and letting fluid drain from the body rather than get pumped in makes. I had my little boy back. Happy, settled and cute as a button.

Back on the ward the x-ray was in and the plan was laid down. The port's catheter had flicked up and so wasn't draining down to Oliver's heart. In fact, it was going up to his little head, against the flow of blood, and into smaller blood vessels. I suspect that this meant that all that screaming was due to a bit of a head ache. It is also the reason why fluid began to leak out of his port site even while he had fluid running in - the result of a difference in pressures. The plan is for mum to take him back in tomorrow to have chemo under a GA, since that's the only way to get a canulla into him with comfort for all. And that's the way it will be done for the rest of his treatment. A GA every 3 weeks until the final one on 1st July. Once Dr Kikiros is tracked down, we will have a date for his port to be removed.

So, that's that. Thank goodness that things are getting easier towards the end of his treatment - not!

Now for some positive news. We saw Dr Angela today and Oliver was able to display his walking prowess. I'm so proud of what my little man has achieved in his short life. We also saw some of our friends today. Michelle, the young 12yo girl with the same cancer as Oliver was in for a checkup. She finished treatment in February, and had to have a lumbar puncture to test her cerebrospinal fluid today. She was a stage IV, so it was in her CSF when she started treatment. She looks great. Happy, no nasogastric tube, and her hair is coming back. It was so good to see her. I can't describe it, but you could see that she wasn't drained. During her treatment you could see a deep tiredness behind her young eye's, despite the beautiful smile on her face. Now there's a sparkle returning.

And the beautiful little Ava was in for a checkup. She also looks great. Smiling, growing, beautiful hair, and just so bright and bubbly. She turns 1 in 3 weeks, and we are looking forward to celebrating with her, although Oliver will be on treatment.

Unfortunately, I met another family with their first baby, a beautiful little 11 month old daughter. In a months time, around her first birthday, she will hopefully undergo a bone marrow transplant. They have a donor and it looks like it's full steam ahead. Thankfully, Oliver hasn't needed such treatment, but I know it isn't an easy path to tread. Please keep this family in your thoughts.

In random news, I have started to listen to John Denver. It makes for quite an ecclectic mix on my ipod - John Denver, Kanye West, and Nickelback. And I'm probably heading back to uni in July. An update to follow.