Thursday, August 16, 2012

Start Here

I have decided to write a blog about our lives; things are pretty busy around here and I often forget to update people or forget who is up to date and who is not. I also want to create a 'journal' so we can look back and see how far we've come. This blog means that I can write in detail about what's happening and people can read it if they want; they won't have my posts clogging up their facebook news feed! Please don't expect fantastic writing because it's not meant to be. This is really just my thoughts written down. If it's coherent then I will be happy with that.

So, where to start: Felix is two and a half, Victor is almost three months old. Felix is a very clever, happy, active little boy, and Victor is a sweet, smiley, contented little baby. We found out that Victor has cystic fibrosis when he was about 4 weeks old. It was a pretty big shock and sometimes it still is.

Victor was born on 18th May 2012 by a repeat elective cesarean. He weighed 2900g and was 46cm long so he was only a little guy. He has been a very placid baby right from the start and breastfed very easily which was fantastic. Everything was fine for those few days in the hospital; he fed frequently and slept very well for a newborn. He lost a small amount of weight those first few days which is to be expected. All was within the normal range so we went home a few days later.

Five days after his birth, two midwives visited us to check up on us. He had gained 40g which they said was good. Then 13 days after his birth, the community Child Health Nurse came to visit. When she weighed him, we discovered he had actually lost weight. She told me this was nothing to worry about and we would weigh him next week to see how things were going. I mentioned his strange poo to her: it was bright green and pretty disgusting. She never looked at it but said that was fine, just the body clearing itself out after the birth. I had never heard of that before but she seemed to know what she was talking about.

The next week I went to visit her, and he had lost MORE weight. Once again, she told me things were fine. I mentioned that his nappy changes were still the same, she told me the exact same thing. I was starting to doubt her competence but didn't want to be the psychotic mother when a medically trained professional had told me everything was fine.

I was really starting to worry about him though. He was just so tiny and it didn't seem right that he was losing weight. He was barely ever awake but he was still very young. His skin broke out in a pretty bad case of 'milk rash' and he looked so tiny and thin. I started getting this horrible feeling that something was very wrong but I couldn't figure out what. I started looking things up on the internet like lactose intolerance, Celiac disease, Crohn's disease, anything I could think of, but nothing fit. I just kept seeing him grow up to be a sickly, skinny kid and it was an awful feeling. I decided that if he hadn't put on any weight by next week I would take him straight to the doctor.

Well, the next Thursday when I went to weigh him again he HAD put on weight...30g. I had no idea how much he was supposed to be putting on but the Child Health Nurse was very happy about it so I figured she must have been right and now everything would be ok.

Then at 8am on Monday my phone rang. It was a nurse from Princess Margaret Hospital (PMH). She told me the results of the newborn screening had come back showing elevated levels of SOMETHING (cannot remember what she said, it's all a bit hazy actually) and that he might have cystic fibrosis. He needed to come into the hospital the next day for a sweat test which would determine whether he had it or not. I really had no idea what to say and I can't remember a lot of what was said but I will always remember how kind she was. She asked me if I knew anything about CF. The only thing I really knew about it was that it affected the lungs. She told me it also effects the digestive system. This is when things started making sense. She told me to stay away from google because there is a lot of outdated information on the internet. We talked for quite a long time while Felix bounced on the couch next to me...I'm pretty sure I gave him lollies so he would let me talk without interruption even though he hadn't even had breakfast yet. The nurse on the phone gave me lots of info: her phone number in case I had any questions, the name of our doctor, where to go for the sweat test and what to bring. I wrote it all down on an envelope with one of Felix's textas. As soon as I got off the phone I called Phil and I must have sounded pretty terrible. I called Mum and my step mum Sarah and ended up spending the day with Sarah and my Nana, who was visiting that week.

This is when I found out that there had been a previous case of CF in my family, which I had no idea about until then. My Dad's cousin had it almost fifty years ago. Since CF is a genetic condition it was seeming extremely likely that Victor had it too.

The next day Phil and I took Felix to my Mum's house and we set off to the hospital with little Victor. He had a sweat test done but he was so tiny that they couldn't get any sweat out of him. They sent us to see our doctor anyway and that's when we found out that there was really no doubt in their minds that Victor had cystic fibrosis. Two mutations had shown up when they looked at his DNA. That, plus the clinical symptoms he had been showing (weight loss, strange poo etc) was really enough to tell us. We were to start treatment the next day.

So for the rest of the week we took Felix to Mum's house first thing in the morning and headed over to PMH. We met everyone in his CF 'team'. They all sat down with us individually and explained everything to us. We met Victor's physiotherapist, dietician, genetic counsellor, respiratory doctor, gastroenterologist, specialist nurses, and social worker.

Victor's treatment was planned out. We do fifteen minutes of chest physiotherapy twice a day. This involves 'patting' his chest in various positions to help break up and clear the mucus. He takes enzymes with every feed because he is pancreatic insufficient. This basically means that he can't digest fats (which is why he was losing so much weight!). He also takes a vitamin supplement every day (Vitamins A, B, D, E, C and K) and a salt supplement six times a day (3ml over the course of a day, given in 0.5ml doses).

He did (and still does) really well with the treatment and quite enjoys taking his salt! I think he also likes getting the little bite of applesauce, which is what we mix his enzymes with.

Victor, 1 day old.
I did eventually go and google everything and still sit up every night reading everything I can about cystic fibrosis. I generally cope pretty well with it all during the day. I just focus on his treatment and I feel that this is something proactive we can do to hopefully avoid him getting sick. We haven't changed our lives much, just need to find time every day to do the physio and make sure we bring his enzymes with us everywhere. I get a little overwhelmed with it all at night though and this is often when I get upset thinking about what this means for him and what the future holds. I try not to dwell on that though and it is hard to be upset when you look at him. He is just thriving now and has lovely chubby cheeks and a big smile. He is a cuddly boy just like his big brother and the two of them adore each other already.

2 comments:

  1. He's an angel! I wish you all the best with your darling Victor. My mom was a teacher, and probably her most favorite, most wonderful student in over 30 years of teaching was a boy with CF named John. There is alot more that doctors can do for CF patients now than when John was a boy. I know where you're coming from about the Christian blogs - that perspective doesn't compute for me either. But everybody has to find their way to muddle through, right? Love your boys, mine are all teenagers now, so I'm jealous of your babies. Happy 2014.

    ReplyDelete
    Replies
    1. We do live in a great time, we are very lucky that there are so many developments happening to work towards a cure. Thanks for commenting :)

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