Sunday, August 26, 2012

Repeat Sweat Test and Check up

The sweat test is the 'gold standard' diagnostic test used to diagnose cystic fibrosis. Two months ago we tried to perform a sweat test on Victor, but he was too little (only 2.6kg) and we could not get any sweat out of him. We learned that the doctors had seen cystic fibrosis in his genes, so how this sweat test could be more accurate remains a mystery to me (I asked the nurse performing the sweat test, she didn't know either).

So this morning we repeated the sweat test. This involves cleaning the skin on his leg; applying some kind of chemical to stimulate the sweat glands; applying an electrode on his calf and another on his thigh; and bandaging his leg to keep it in place. The machine is then switched on and a small electrical current goes through the electrodes to also stimulate the sweat glands. This stays on for a period of time. Then the electrodes are removed, his leg is cleaned and a small sweat-collecting patch is placed on the thigh (looks like a little circle of paper). This is taped down securely and his leg is wrapped back up to keep it warm. He then gets wrapped in blankets to make him hot and sweaty, while this process occurs on the other leg.

Apparently the electrical current feels like tingling on the skin and is not painful. Victor had more of a problem with the cold chemicals going on his leg than the electrodes being switched on. I bundled him in two warm blankets, put a beanie on his head and held him up on my chest so he would also warm up from my body heat as well. He had a feed then slept through the whole thing. It worked; he produced enough sweat to be able to perform the test. The results will probably be back by tomorrow morning and I will get a call on Monday to let me know. This test measures the level of salt in the sweat. A higher level of salt is indicative of cystic fibrosis.

After the sweat test was over, Mum, Felix, Victor and I went to a cafe for lunch before Victor had his check up with his CF team.

First we weighed and measured him. He is up to 4.72kg (10lbs 7oz) and measures 56cm long (22 inches). This puts him on the 10th percentile on the weight chart and 3rd percentile for height. It also means he has put on almost a kilo in a month and grown 3cm since we last saw them, so that is really good news.

Next we met with Victor's physiotherapist. She is happy with how things are going and we discussed starting some little baby exercises and stretches, because exercise is important in keeping him healthy. She said a good idea might be to get a gym ball (one of those big ones you sit on) and gently bouncing with him. Lots of tummy time is also very important for him.

I asked her about these physiotherapy 'vests' I keep hearing about in various CF forums. Straight away she told me they were not recommended. There had been a very large study conducted and it strongly demonstrated adverse outcomes and more frequent hospitalizations among the people using the vest, to such an extent that the study had to be abandoned. So no hospital in Australia will recommend use of the vest. Instead, we will stick with what we've been doing, which is manual physiotherapy.

I then met with Victor's dietician. She was very happy about his growth and we are increasing the amount of enzymes to a scoop and a half for two feeds of the day. Since he's breastfed it's hard to tell how much he actually gets at each feed so we have to just guess. If he's gone a while without a feed (such as overnight) and is likely to take a lot more at the next feed I will choose that one to give the extra enzymes. We discussed starting solids and he'll probably start at four months. He doesn't need to take enzymes for most fruit and vegetables so that will help simplify things when we first start out.

We also saw Victor's respiratory specialist who is happy with him too. He spoke to me about how he was going, looked at his charts and what the other specialists had said, watched him breathing and listened with a stethoscope. Unfortunately he will be away on leave next month for the CT and bronchoscopy so one of the other respiratory specialists will do it and he will see us two weeks afterward. His medication dosage has increased to 1.1mls of antibiotic because he has grown bigger.

We then went to the hospital pharmacy to pick up all of Victor's medicines because we are almost out of everything. I got 3 months' supply of everything, which came to the shocking total of $69.60, even with Victor's health care card which caps all medication prices at $5.60. I suppose that's not really too bad, it could be so much worse, I just wasn't expecting it as I had never bought that much medicine in one go before. I definitely got a few stares from other parents waiting for prescriptions as I needed three shopping bags to carry all the medicine to the car, probably looked like I had just bought out the pharmacy.

So it was a good check up and Victor is doing really well. He is healthy and doing everything that he should be doing. Felix was amazingly well-behaved on our long day at PMH. He played at the big playground on Level 7 with my Mum and came back with a balloon animal (a monkey up a tree! So cute). He was so tired by the end of the day that he almost drifted off to sleep on the way home in the car, and I don't blame him: we had been there for five hours.

Victor sleeping at the cafe after his sweat test.

Felix playing with sugar packets, waiting for lunch.

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