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!


  1. Victor could not be more beautiful. I am happy that he had such an overall positive annual review. Keep up the good work, and enjoy your trip to the USA. That's where I live, but I hope you're visiting a more picturesque locale than my own, the good ole Garden State, New Jersey!

    1. Thank you! We will be visiting the West Coast, but I hope to see more of America one day!


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