Friday, April 19, 2013

Annual Review 2013

Today was our first annual review, which is basically the same as our regular appointment except that we see everyone, review all Victor's medications and how things are going and make sure that everyone is up to speed with everything.

It was just me and Victor today, as I dropped Felix off at Mum's house before I left. A regular appointment takes forever and is exhausting and I knew this one would be even more so.

Our first appointment, after getting Victor weighed and measured, was with the physiotherapist. We discussed his physio routine, which is going pretty well, and there's not really any adjustments that need to be made. I can start patting more of his back now as his lungs have grown and they are obviously a lot bigger now than they were when he was a newborn! We discussed behavioral issues that may crop up in the near future as he becomes a toddler and tries to assert his independence. Basically the biggest key seems to be consistency and routine, so we are going to stick to doing what works for us.

We spoke to the dietitian next. Victor is eating very well, and he has put on weight, but not as much as they were really hoping for. I am going to add more fat to his meals to see if that helps, but it's probably just because he's so active right now that his weight has naturally leveled off a bit. He is still within the right area on the charts and is definitely proportional so they are not concerned about that at all. Next month he can start drinking cows' milk: yes, that means in one month he will turn one!

Next was the gastroenterologist, and we talked about what was coming out of Victor's other end. Recently things have been a little strange so I got to describe my son's poo, in detail, to a lady I had never met before. Since this was a super fun experience I will paraphrase what's going on. He poops about five times a day and each one is different: some are really hard, some are liquid, and the rest are somewhere in between. I haven't noticed any oil in it though (which would be a sign that we need to increase his enzymes). She prescribed him a reflux medication that will help with absorption of the nutrients he's eating and hopefully get things to improve in this area.

Last of all was the respiratory doctor. We discussed his CT and bronchoscopy results, especially the Klebsiella that was found. He explained that the Klebsiella bug Victor has is related to some very nasty bugs, but the particular one he has is not that bad and that's why we are just treating it using oral antibiotics rather than a hospital stay and IV antibiotics. He also changed the dosage of it so we don't have to wake up in the middle of the night to give it to him, which is great! Hopefully this will mean that Victor sleeps a bit better at  night than he has been. We also discussed the CT findings. Victor's lungs look good. There was a small amount of air trapping in the very bottom but he said this was present in practically all CF patients and he was not concerned about it. It's like a reminder to not become lax and to remember that while he seems so healthy, we all need to be vigilant about his treatment and care.

I definitely felt like it was a bit of a wake-up call when they found Klebsiella in his lungs. This bug will not infect a healthy person: it will only grow in the lungs of people who have lung disease or who have immune problems. So that was a big reminder that even though Victor has never even had a cold, he does not have strong, healthy lungs like the rest of us. It made the whole situation seem real instead of this 'what-if' situation that in a way, it had been.

But it's still important to remember that he is healthy and can do anything he wants to. In fact, today his doctor wrote up a letter about his medication to show to customs and gave us the all-clear to fly...because we're headed to America in just six weeks!

I only bought one months' supply of medicine today as we're pretty stocked up.
Had to add this photo of Victor, even with all the mess behind him! Happy baby racing down the hallway!

Saturday, April 13, 2013

Results of CT and Bronchoscopy 2013

The good news is that Victor's lungs are looking good on both the CT scan and bronchoscopy.

The not terrible, but not so great news is that a bug was found in his lungs. It's called Klebsiella and they caught it nice and early (this is why we do annual bronchoscopies even though he's well!). Victor has no symptoms.

What we're doing now is giving him a new antibiotic, an oral one, every six hours, for a month. This has replaced his usual antibiotic. I have an alarm set on my phone that goes off four times a day when it's time for his medicine: 7am, 1pm, 7pm, 1am.

His doctors don't seem to be concerned and we will review the situation at the next check up, which will be very soon. I'm not sure what will happen if it's not eradicated, or how they will test to see if it has been or not.

We don't know where he got it from and probably will never find out. Klebsiella is a bug that lives literally's very common in the natural environment and in the intestines and mucus membranes so I guess he could have got it from anywhere.

I am looking forward to this month being over, and talking to his doctors about this particular bug and what we're going to do next. I'm glad his doctors are on top of things and that we caught this so early that no damage has occurred.

Monday, April 8, 2013

CT and Bronchoscopy 2013

On Friday we woke up before dawn, at 5am, to get ready for Victor's second CT scan and bronchoscopy. 5am was the latest time he could have breastmilk before he had to begin fasting for the procedure, which was done under a general anesthetic. Phil had the day off work so we could go in together, and my Mum came over to watch Felix at home for us.

I fed Victor at 5am and instead of going back to sleep, like I'd hoped, he decided to wake up properly. Luckily he was in a good mood which gave Phil and I the chance to get ready and make sure we had everything packed. We had to bring the usual things: Victor's medication, nappies, wipes, changes of clothes, but also the box containing the study drug and paperwork. I had also packed a small overnight bag for Victor and myself at the advice of doctors, 'just in case'.

Mum arrived at 6am when Felix was still asleep. Our appointment was for 7am and Victor was the first to go in, his age working in his favour.

Victor was very happy the entire time we were there. We filled out paperwork and then were led downstairs to the radiology department. I went in with him while they administered the anesthetic. The room was quite large and home to an enormous CT scanner, which looks very white and modern. I placed him on the little table, but he wasn't having it: he instantly rolled over and tried to escape. He needed to lie on his back to have the anesthetic so the nurses held him down while the anesthetist placed the little mask over his nose and mouth, which of course made him instantly hysterical. I held his hand the whole time but I don't think it brought him much comfort. The nurses said they purposefully didn't hold his legs down so he would feel as though he had a little bit of freedom to kick and fight.

Eventually the gas kicked in and his eyes started to close. I was quickly ushered out of the room by a nurse who was very nice and asked in a sympathetic tone "Are you alright?" I was fine. It wasn't nice seeing Victor so upset like that but being ten months old he gets upset like that if a toy gets taken away. I knew he would be well looked-after and now that the anesthetic had kicked in, he would be ok.

Phil and I went to get some breakfast at the hospital cafeteria and then waited up at the 'Friendship Room', which is essentially a waiting room for parents with children in theatre. It was at least forty-five minutes later when we were called back downstairs to radiology because Victor had finished and was in recovery.

We ran down to see him, but when we got there the nurses told us he was in recovery but still fast asleep. They explained there are two ways a child can go after anesthetic: either they wake up fast and hysterical (which is what happened last time) or they continue to have a sleep while being monitored, and wake up slowly but much happier. So we sat back down in a waiting room down the hall and waited for about half an hour, the maximum amount of time they will let a child sleep for post-anesthesia.

I went in to get him and saw him sleeping peacefully on the hospital bed. We gently woke him up and he immediately sat up and I picked him up off the bed. He was happy to be held and although his eyes were bleary, he was interested in everything and looked around at everyone.

I carried him back up to the day ward and we stayed in there for a while longer while the nurses observed him. He had a feed and then played with some toys, but he was most interested in chewing on some plastic tubing on an oxygen cylinder! After a while the nurses were happy for him to go home so they took out his IV and we were sent on our way.

Overall the procedure this time was much easier. I think that has to do with the fact that we've been through it before and knew what to expect, and also because he's older now and not so tiny and confusing and fragile. I had some conflict with the nurses the first time which I was anticipating this time as well. I found that I managed to avoid it completely by just speaking directly to the doctor and anesthetist, not going through the nurses for everything.

Victor and I back in the ward after his CT and bronchoscopy. You can see his eyes are still a bit drowsy here, but he'd been playing with toys and getting into everything!

We won't get the full results until later this week, but the doctor came to see us before we left the hospital. She said there was no sign of inflammation in the lungs at all and they looked pretty clear. There were some secretions but not too much so her opinion was that things looked pretty good and normal in there. She also told us that the CT scan looked good, however there was a small area of slight change noticed in the lower right lung. She was quick to say that this could have just been because of the way he was lying and not actually a change at all, and they could only see these images on a small screen so it was hard to tell. They will be looking at the images properly this week. During the procedure they also do a lavage, which is squirting saline solution into each lung and sucking it back up and then testing that solution for germs, and tracheal brushings to collect lung cells. If they found any nasty bugs they will let me know immediately and he will be admitted, but it's Monday night now and so far it seems we're in the clear.

Victor has recovered very well from the procedure with only a tiny bit of coughing immediately afterwards (which is a normal side effect). He is back to his usual self! Eating us out of house and home and endless readings of 'Where is the Green Sheep?'.

Thursday, April 4, 2013

Anesthesia, Fasting and Enzymes

It's really frustrating having a conversation with someone when you're both not on the same page. I got the phone call today regarding fasting information for Victor's CT scan and bronchoscopy, scheduled for this Friday. The nurse who called me said that we would have to stop all solid foods at 2am, and he would have to have his last breastfeed before 5.30am in time for the procedure, since it will be done under general anesthetic.

Now, that's pretty simple information. I don't have a problem with any of that at all. But last time Victor had this done, we ran into a problem regarding enzymes.

Basically, Victor needs enzymes any time he eats anything. The enzymes look like tiny little round grains, and we mix the correct dosage into a bit of apple purée for him. The apple purée is needed firstly so he can swallow the enzymes without choking on them, and secondly the apple provides a protective acidic barrier around them so they don't start activating in the mouth or anything like that, and begin their work in the small intestine, where we need them.

Last time Victor had a CT and bronchoscopy, I didn't even think about it until it was too late: I gave him the enzymes with apple purée before feeding him. When we got to the hospital, no one seemed to know if that was ok or not. Some nurses said yes, some said no; the anesthetist said it was fine so everything went ahead.

This time I wanted to remove any doubt and asked the nurse calling me today. She had no idea, and said it was up to the anesthetist whether that tiny bit of apple purée was going to be a problem or not and she didn't know who was going to be on that day. She suggested that I either not give the enzymes (bad idea) or mix them with milk.
"Can you do that?" I wondered to her. Mixing enzymes with milk? I would guess that milk was alkaline rather than acidic?
"Yes, that will wash them down," she said. "Maybe he will choke a bit but he's on solids, isn't he? He should be fine with taking things from a spoon."

It was at this point that I realised I was talking to someone with no real working knowledge of the treatment of cystic fibrosis and who had probably never seen a bottle of pancreatic enzymes before.

So as soon as I got off the phone with her, I called one of the CF nurses at PMH. She was surprised by the question because apparently no one has ever asked that before! She admitted she didn't know the answer but would try to find out. Until then, she advised to mix the enzymes with milk: it's certainly not ideal and he probably wouldn't get much benefit from it, but it would be better than nothing. She said they would have to work with the radiology department and devise a plan for administration of enzymes while fasting because this was a bit confusing. She did say that taking the purée shouldn't be a problem though, because the tiny amount of apple would definitely be absorbed before undergoing anesthesia, but some anesthetists can be a bit pedantic apparently.

Quite a while later I wondered if mixing the enzymes in apple juice could work? I don't think I would be able to bring myself to feed him without enzymes at all because I am so used to it. Sometimes I give Felix something to eat and suddenly have a mini heart attack because 'I've forgotten his enzymes!' Of course, Felix doesn't have enzymes! On a tired day I am at risk of going around giving enzymes to everybody, it's become so routine.

And speaking of being tired, Victor has been sleeping especially badly lately. I finally got a good look in his mouth and there it was, four little sharp points of a molar sticking through his gum! No wonder he's been so miserable lately. It even looked sore. I could feel a tiny sharp speck on the opposite gum so looks like another one isn't too far off. I can't wait for this teething business to be over!

Wednesday, April 3, 2013

Lung Function Testing 2013

Today we went into PMH for Victor's second lung function test. He had his first one last August, so it should be an annual thing (I think) but we've only had an eight month gap in between.

Lung function testing is really important for older kids and adults to measure, well, lung function. It's not usually used for infants but that's why we are having it done: as part of a study to see which data they can use from it and to see if they can incorporate lung function testing as standard care for babies and toddlers. It also ties in with CT scans and bronchoscopy and they use the results from both procedures to look at respiratory health. The researchers follow each patient for several years and will use all the collected data to see if they can use the results of these early tests to predict long-term health outcomes.

Since we have been through this procedure before, it was a lot easier since I knew what to expect. We arrived at PMH at 9am down in the respiratory department (my aunt and Felix went to play in the Megazone...Felix loves that place!). We recorded weight and length (he has grown!) and filled out a bit of paperwork, went over Victor's medications, etc. The doctor in charge of proceedings today went over everything with me again just to make sure everything was clear and then we got started.

To have the tests done, Victor had to be sedated with chloral hydrate. It's an oral medication which I administered, and Victor hated it. It must taste really awful because he screamed hysterically when I gave it to him. He calmed down and I rocked him to sleep. It didn't take long before he was sleeping peacefully. We then walked over to the procedure room and I placed him on a little table. There was a pulse oximeter attached to his toe which gave a constant reading of his oxygen levels and pulse so we could easily see that he was doing ok the whole time.

The tests involved having him breathe a tracer gas to see how quickly his lungs could expel it and using sound waves to measure his lungs and things like that. Everything was non-invasive. The reason he had to be asleep is because it would be impossible to get a baby to cooperate! We can't exactly ask him to hold his breath or blow into a mouthpiece. He wore a little inflatable jacket and had a mask on so the researcher and doctor could control his breathing when they needed to. It took probably an hour all up and honestly was all pretty boring. He slept through the entire thing so the researcher and doctor got all the tests done and got all the information they needed, which was great.

Tests all completed, now we're just waiting for him to wake up!
After the testing was done they cleaned the room and we just waited for him to wake up. After a while we switched on the lights and began to make more noise and he finally woke up. I was worried he was going to be cranky, since he was waking up in a strange place and had been fasting since 5am that morning, but he was bright eyed and happy. Because of the sedative he was still a little drowsy and had a lot of trouble with muscle control for a few hours afterwards and kept falling over. He also made the strangest faces and little sounds when he first woke up and acted like he was drunk! I was told he probably did feel a little tipsy! He was interested in the toys we brought him to play with and ended up taking the pulse oximeter off his own foot. And then attempted to chew on it.

He ate a big chocolate muffin in the hospital café, and then we went home where he had lunch and a good nap. He played happily for the rest of the afternoon with Felix. Playing outside is his new favourite thing. He starts out in the cubby house, which has astroturf under it so it's nice and soft and clean for him, and he plays with the plastic food in there and looks out the window. Then he inevitably crawls onto the brick paving and 'runs' to the grass, passing through the garden bed on the way...and ends up completely filthy. Black knees and the tops of his feet are a feature now. It will be a lot easier for him when he starts walking!

Still a bit wobbly but alert and happy after the tests are over. He's just ripped the pulse oximeter off his foot!
We will be back at PMH on Friday for his bronchoscopy and chest CT scan, which is more invasive and performed under general anesthesia so a bit tougher for us all. Because the lung function tests are part of the study, we won't get any results from today because until the study is completed they are all a bit meaningless. But we will receive results from Friday's procedures so we will know early next week exactly how he is doing.
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