Saturday, September 22, 2012

CT Scan and Bronchoscopy

Finally it's the end of a very long and stressful day. Victor had his firct CT scan and bronchoscopy today. This is part of his standard care, it's basically to have a good look at his lungs and see if there are any areas where damage might have occurred, or if there is any sign of infection or inflammation. By doing these tests before he shows any signs of infection we can hopefully prevent any permanent damage to his little lungs.

Once again, our day really began the night before. I got everything ready so we could leave the house by 6.10am and set my alarm for 4.40am for Victor's last feed before he had to begin fasting. I had received fasting instructions the day before: he had to stop eating solid food from 2am (irrelevant, as he doesn't have solids yet) and could have the last breastfeed before 5am. So I woke up to feed him in time for him to begin fasting, went back to bed for an hour, then it was time to go.

We arrived at PMH at 6.45am and began upstairs in the Same Day Procedure Unit. We filled out lots of paperwork, weighed Victor and put him in a little hospital gown. The anesthetist spoke to us, as did a doctor and several nurses about what was happening today and gave us the opportunity to ask questions. Just about everyone asked the same questions, with one of them being when did Victor last eat. I told everyone who asked that I last fed him at 4.40am, but he had a tiny bit of apple puree to take his enzymes with at the time as well. I had completely forgotten about that until I had already given him the apple, but I figured that since it was such a tiny amount it wouldn't really matter. No one really seemed to know if it was okay or not, until the anesthetist told us it was fine. We went downstairs to the radiology department, where we met with more doctors and nurses.

This is where I have to mention that 99% of the time, nurses are wonderful people who do fantastic jobs and are really caring and good at what they do. But sometimes, they are not so fantastic, and unfortunately today we ran into a couple of nurses who perhaps needed to go on holiday or something.

We sat in the waiting room, and had more nurses come in to speak to us. Once again we were asked when Victor last ate, so once again I told them at 4.40am and he had a small amount of apple puree at the same time. One nurse then said "Oh. He had apple puree? Nope, he wasn't supposed to have that. Have you told anyone about that?" we said yes, we've told everyone. "They didn't tell me that," she said to the other nurse in the room. "Did you tell the anesthetist?" Yes, we answered. "Well, look, you weren't supposed to do that so we'll probably have to delay everything. We've had problems with this before, there's strict rules about it. Next time do not give him the apple puree." She decided to tell us off in a very passive aggressive way.
"So next time we just don't feed him at all then? Because we have to give him enzymes before he eats, otherwise there is just no point in feeding him as it will go straight through him, he will get a very sore stomach and diarrhea," we explained to her. She didn't actually answer that, and just kept saying that now everything would have to be delayed. Luckily, this is when the anesthetist came in and said everything was fine, the tiny amount of apple puree did not affect anything and we could go ahead as planned.

Another nurse told us that if we wanted to, one of us could take him into the procedure room and stay with him as he went off to sleep. I said that if it was okay, I would like to stay with him for that. When it was time to go in, yet another nurse came to take him. I said that I had been told I could go in with him. She asked me who had told me that, and seemingly reluctantly let me come in and stay with him as he was put under anesthetic.

I carried him into the room, which contained a CT scanner and another table, which is the one I placed him on. He smiled around at everyone as the little mask went over his nose and mouth and he wriggled around and then began to close his eyes.
"Okay, thanks for your help," the nurse said. I found that comment to be quite condescending. It felt to me as if they really didn't want me in there at all and thought I was being...not really sure...overprotective? Annoying? Either way, the feeling I got was that they would roll their eyes about me once I left. It was a really terrible attitude for them to have, especially on such a stressful day for us. I understand this procedure is not a big deal to them, but it is for me. This is the first time my baby had gone under anesthetic and the first time he'd had a procedure away from me, not to mention the fact that he is only four months old. But I knew that he would be in good hands with the doctor doing the procedure and the anesthetist looking after him.

The procedure, as described to me, was having a CT scan first to look at his lungs. This is to identify any potentially damaged areas (hopefully none) and just to have a good idea of what his lungs look like.
The bronchoscopy was next. This is where the doctor inserts a small camera on the end of a flexible tube down his throat, into his lungs. They looked at the airways to see if there were any signs of inflammation, the colour and quantity of any lung secretions, and to see if the airway stayed open while he breathed instead of flopping closed. They also squirted a small amount of saline into each lung and sucked it back up, taking mucus with it. This will be tested for various germs in the lab. The doctor also did tracheal brushings, which is scraping a few cells off the trachea to be tested for signs of inflammation.

I went back into the waiting room to join Phil and Felix, and that's when we spoke to a researcher about the clinical trials we are participating in (that's for another post).
We took Felix to the hospital Cafe and gave him some breakfast, and then we were told that Victor was all done and in recovery. I went back upstairs to wait for him while Felix finished breakfast. Phil then took him to play in the 'Megazone', the playground on Level 7.

I went in to see Victor, looking very small on a big hospital bed. He was just in a nappy, his little hospital gown had been taken off at some point, and he was wearing a peach-coloured beanie. He had an IV line placed in his hand and a monitor on his toe, measuring his heart rate. He was beginning to wake up and was seemingly disoriented and very unsettled. I picked him up but he was still very upset. I asked if I could feed him, but the nurses had just called for the Ward staff to come and get us and they didn't want me to start the feed only to be interrupted. Personally, I think that would have been worth the risk as he just became more and more upset. Not even his salt supplement helped (it usually settles him) and of course, his dummy was in the car! The Ward staff arrived and we were handed over to them and went up to the Same Day Procedure Unit.

I gave him a feed but he was still very unsettled and basically cried through the attempt. Phil and Felix arrived with the dummy, and I was able to rock him to sleep and finally he settled. The Ward nurses did a few obs, checking his heart rate and listening to his chest. He had a little bag in his nappy to collect a urine sample, so they took that off and took out his IV line and the heart monitor still on his toe. He also had a pretty large bandage right at the top of his thigh, almost in the groin area which was where blood was taken during the procedure. He woke up during this but was much happier and back to his usual self. We went home and had lunch, and then Victor had a very long nap. (So did I!)

He has been coughing a bit today, which we were told was a common side effect of the tracheal brushings they did as part of the bronchoscopy and should only last a day or two. He has also been a bit sleepier than usual, which is to be expected.

Me and Victor
The doctor told us that everything went really well, and we should get the results by Tuesday. He said that Victor's lungs are looking good, with no signs of inflammation, and not too many secretions at all. The airway is staying open as he breathes.

I was given Victor's little hospital bracelet and the tiny mask they used over his nose and mouth to keep as a 'souveneir'. Not really sure what I'm supposed to do with it as it holds limited appeal as a mantelpiece ornament...

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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