Tuesday, September 18, 2012

Lung Function Testing

Today we went to Princess Margaret Hospital for Victor's lung function test. Lung function testing will become extremely important as he gets older; as the name implies, it measures how well the lungs are functioning. The testing he had done today is partially for his benefit, but it was primarily for Cystic Fibrosis research. Not much data has been collected for young babies' lung function testing so there isn't really a way for doctors to interpret the data collected, but they will go over his results with me and explain them in a few weeks' time. These clinical trials are being performed so that one day we may be able to use lung function tests on infants, instead of the more invasive CT scan and bronchoscopy (which he is having done this Friday). It will also give us a baseline to go off as he has more of these tests done in the future.

Our day really started last night. I had a rent inspection today as well, so I stayed up late making sure the house was tidy and getting everything ready for the morning so we could leave quickly. I finally got to bed at 1.30am, only to have Victor wake for a feed at 2.30am. He had to begin fasting at 5am so I set my alarm for 4.40am, gave him a last feed so he wouldn't be too hungry, and got back to bed until 7am. At some point Felix ended up in my bed too, so not a very relaxing night at all!

I went to PMH with my sister in law Lulu, and she was able to watch Felix and take him upstairs to play while I stayed with Victor.

We were able to park across the street at the Telethon Institute for Child Health Research, where we had a reserved parking bay (as anyone who has tried to find parking in Subiaco knows, this was really helpful!). We then went to PMH and met with the medical researchers who are running the clinical trials. They went through everything with me, weighed him and gave him a quick check up to make sure he's healthy, then it was time to get started.

I gave Victor a sedative (choral hydrate) which was an oral solution given by a syringe. He didn't like the taste of it at all and spat out a little bit, but the majority of it went down. Then I gave him his dummy and rocked him to sleep, which didn't take very long.

We then walked across to the lung function testing room, which was small and quite dark and filled with pieces of equipment and medical machinery. I placed Victor on a little table and a respiratory doctor sat with him. The researchers explained everything to me as they did the testing. It was strange seeing him asleep on the table; although he was not actually anesthetized and was just asleep and breathing on his own, I think the fact that his head was held still by a donut-shaped pillow made it look unnatural because he doesn't sleep staring at the ceiling, he faces one way or the other. There were seven of us in that small room, including Victor and myself, so it was quite crowded and I didn't really get to see exactly what they were doing in detail.

The first test was measuring his resting breathing rate. They just wanted to see how fast he was breathing.

For the second test, he inhaled a tracer gas in a mixture with oxygen (so he was still breathing the normal amount of oxygen normally present in the air). The tracer gas is quite dense so it wouldn't cross over into the bloodstream. This test was to see how quickly and efficiently he was able to expel the tracer.

The third test used sound waves to take measurements of the internal structure of the lungs and see if there are any obstructions in there. This meant they put a little inflatable vest around his chest and tummy and a mouthpiece over his nose and mouth so they could control his breathing. He had to hold his breath for seven seconds so they could use the sound wave to take the measurement.

I sat in the room for the majority of the test, but did leave for a few minutes to speak with the head researcher who is also a respiratory doctor at PMH. We discussed the research and he told me about further, related trials that he thinks would be beneficial for Victor to participate in, which Phil and I need to discuss because there is a difference in opinion in our house about participating in clinical trials.

While I was out of the room, Victor woke up very briefly and the researchers were able to quickly re-settle him with a cuddle.

I came back into the room as they finished up. He was still fast asleep so I picked him up and we took him back to the original room. He still had a little monitor on his foot, measuring his heart rate. Two of the researchers stayed with me as we waited for him to wake up. We waited...and waited...and waited. We waited so long for Victor to wake up that I either made two new friends or got myself blacklisted with my inane babble. Eventually he woke up at 12.15pm, one of the longest-sleeping babies they've had, apparently: he had been given the sedative at 9am. He woke up smiling and had a good feed before we left and were given the all-clear from the respiratory doctor.

Felix came back with a balloon animal (an elephant), a sticker, and another sticker which he stuck on his little brother's shirt. Victor was drowsy for the rest of the day, and had a few long naps at home. He was awake for a while and was his usual self, but he really just wanted to sleep.

Speaking of sleep, he is now sleeping in the cot in his own bedroom! He's doing really well at night, normally only waking once a night and putting himself to sleep after a bath and a story.

We have two quiet days ahead until Friday, which is the CT scan and bronchoscopy. Phil is getting that day off work to come with us which will make everything a lot easier.

We have also had a visit from Phil's Mum, Donna, which was really nice. The boys loved spending time with their Grandma and they miss her a lot now that she's back in America.

While I was washing dishes, Felix decided to play with everything at once...!

And then he felt the need to get everything out in Victor's room too....sigh.
We have been spending time at home lately, doing lots of painting, reading, imaginative play (Felix) and seeing friends and family. Victor is starting to hold toys now, which go straight in the mouth, and he will be starting on solid food next week.

Victor with his favourite toys...space-themed baby gym! He's getting so big.

Felix painting a picture from a Lightning McQueen colouring book.

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