First Illness

Felix and I both had a cold last week. It was nothing too bad...congestion mostly, fatigue, a mild cough. I just wanted to go to sleep the whole time so we spent a few days on the couch watching movies and using hand sanitizer obsessively. The whole idea is that what's just a mild cold for Felix and I could be something much more serious for Victor, so we tried our absolute best to protect him from it. Even so, I felt like a walking germ factory and every time I held him I could feel myself shower him in billions of germs. And with a baby who can't walk yet, you hold them a lot.

Victor got a fever last Monday, just like Felix had a few days before. But, like his older brother, the fever was gone the next day. When Felix showed other symptoms a few days later, I pretended that Victor still hadn't caught it, as he had no symptoms. But, of course, he started coughing on his birthday. His eyes were heavy and he was very sleepy. I called PMH that afternoon and spoke to the doctor on call. He said to keep an eye on him and see if the coughing resolves over the weekend, since he was otherwise well and breathing ok. 

On Monday I put Victor down for a nap only to go in there ten minutes later because he woke himself up with coughing. It sounded really bad, like he was choking on phlegm. I called PMH and spoke to one of the CF nurses. She initially told me to bring him in the next day, but when I said we are supposed to be going overseas next week, she told me to bring him in that afternoon. 

Luckily, my Dad is having a few weeks off from work and was at home so I was able to drop Felix off with him. Victor and I headed to PMH. We met with one of the respiratory doctors and both the CF nurses. They heard him cough several times, and heard his cries turn into big, productive coughs. They heard 'crackles' in his chest through a stethoscope. The decision was made to treat the cough with both nebulized antibiotics (tobramycin) and an oral antibiotic. The hope is that by treating it from both angles, it will resolve quickly in time for the flight. I was told that if we don't see dramatic improvement in a few days, he will probably need to be treated with IV antibiotics for a few days. And if that doesn't work, then he will be too unwell to travel.

Phil arrived at PMH then and we picked up his new medication and headed back down to respiratory to learn to use a nebulizer. This is his first time using one, so we had no time to buy our own and we're just borrowing one from the hospital. Victor was all smiles as we sat in the office with one of our CF nurses. She taught us how to set it up and everything, and then we attempted to actually use it on Victor. It did not go down well. It took the three of us to hold him and the little mask over his face while he screamed and thrashed around. He knocked the nebulizer (neb) cup and spilled most of the medicine all over the floor so he only had about five minutes instead of the required fifteen. We took it home with us and I was really anxious about it, especially how I'd go using it on my own.

The next morning was a disaster as I was by myself with him and he knocked the neb cup again. 

That night Phil was home to help me. We held him tightly as we administered the medication. It broke my heart to see him so upset. Sweat and tears mixed together on his tiny face and he sobbed and said 'Mama, mama, mama,' over and over while looking at me. It's the clearest I've ever heard him say it and I couldn't save him from the situation. I held his little hands, partly for comfort, partly to stop him knocking the neb cup again. We got the full dosage of medicine in him.

This morning I was on my own with him again and I had a big knot in my stomach. He did a lot better this time, but it was awful to watch because he began thrashing and screaming to begin with and finally just resigned himself to sitting there and crying silently while I held him on my lap, arms pinned down with my left arm and held the nebulizer mask to his face with my right hand. This evening with Phil was the same. It felt awful. Like we finally won, but we had to break his spirit to do so. We finally overpowered the tiny baby with the strong will and he's just given up.

My only consolation is that this really is for his own good and one day he will understand. And he forgives easily. After the neb I wash his face, because the medication can cause irritation if left on the skin, and he will smile at our reflection in the mirror. He will then want to play and a few minutes later he's laughing like it never happened, but his eyes are still puffy from crying.

I know there are worse things that could happen and there are children going through much tougher things than learning to use a nebulizer. It doesn't make his fear and frustration any less real and valid. And it's really hard watching your child go through that. We have to persevere though, because he has to get better. He doesn't like the home nebulizer but he'd hate the IV in hospital even more. And then there is that chance that he'd be too unwell to travel. At that point we only have lose-lose scenarios. I don't even know what the best option would be at that point. 

I am going to call PMH in the morning and talk to them about Victor's cough. It's still there, but I think it is less productive sounding than it was on Monday. He's definitely not choking on phlegm. His cries are not turning into big, nasty coughs. He's sleeping well and eating well. He is happy and playing during the day. These are all really good signs. His breathing is perfect. To my untrained ear I think his cough is sounding a little drier, but I doubt myself a lot and wonder if I'm just hearing what I want to hear? In any case, he's definitely not getting worse. I have hope we can avoid IVs this time, but I'm interested to see what the CF team say about him tomorrow. 

I know this is the deal with CF, that ordinary bugs can cause big problems for them. It's just hard to fathom, still, that the little stuffy nose we had has made my boy this sick. I mean, I understand that this is the problem and we know and understand this, but seeing it in action with my own eyes is so different to reading it on paper or talking about it with a doctor. It's awful. I hope that tomorrow he does exhibit the 'dramatic improvement' the doctors are wanting.

Happy Birthday, Victor!

Victor's first birthday! I can't believe it's been a year. Seriously. It's gone so fast.

I love planning birthday parties and giving my best shot at making a themed birthday cake, even if they don't turn out like the perfect things all over Pinterest and the more crafty blogs floating around the internet. My Mum always made themed birthday cakes for my brothers and me when we were little and I remember every single one of them. So I have to do the same for my boys, of course!

I felt like I had absolutely no time to plan anything because everyone in the house has been sick, so Victor's party was just family over for cake and a bit of party food in the morning. He had a 'Monster' theme, which was really fun to do!

Victor was so happy to have everyone over and he got so spoiled!

He absolutely loved eating the party food...vanilla pudding and cake were his two favourites. In fact, he may have had a second piece of birthday cake after making it very clear that he was not done yet!

Thanks so much to everyone who came to celebrate with us, and to those who couldn't make it but were thinking of him on the day. I really can't believe my little baby is one already!

Insurance: Denied

Am I living in some kind of la-la land? I realise the seriousness of cystic fibrosis. Truly, I do. I tend to not dwell on it and only focus on what is happening to my family right now. This has been a good and bad approach; good in that I don't get bogged down in the what-ifs and maybes, bad in that I have a tendency to gloss over things "oh, but that won't happen to us." Yes, I still have that mindset. Incredible, really, when I know firsthand that yes, these things do happen to you!

Today I had a nice little jolt back to reality in the form of a phone call. I think all my visits to cold harsh reality come in the form of a phone call, no wonder I keep accidentally breaking each and every phone I've ever had. I'm inadvertently saving myself from things I don't want to hear.

Today the phone call was from the insurance company we applied to for travel insurance. We are going to America for three weeks soon, so we applied to the one company we found that didn't outright deny coverage for CF patients. This particular company said they would consider covering CF on a case-by-case basis. Victor's doctor signed the forms and said he was more than happy for Victor to travel. Victor has been very healthy so far. The medications and treatment he's on are simply preventative at this stage. So it came as a shock to me when the voice on the phone told me our application to have Victor's CF covered for travel was denied. I actually had to get her to repeat what she said.

It felt like massive waves of disappointment roll over me. Everything had been going right. Everything was fine. The kids are healthy: we just wouldn't be going on this trip if they weren't. We got the hoped-for bassinet seat on the long haul flight. We discuss the flight and where we'll be staying with Felix all the time and watch Peppa Pig 'The Holiday' every day during morning physio. I was so confident that this would not be a problem at all. But there we were: denied. I asked why, why was he denied insurance? I was put through to someone else who explained the company takes a 'very conservative view' when it comes to covering CF and he was denied because he is on antibiotics.

Antibiotics...but they are preventative antibiotics. He is not actually sick. He is on antibiotics to prevent sickness. This is standard treatment for babies with CF here! I was told that I could appeal the decision if I could provide medical evidence, but it was highly unlikely they would change their minds. Especially due to our destination and the length of stay.

I don't know why, but it really upset me. I felt irrational and pathetic being so upset about it. I hung up the phone and cried into my pyjama top, feeling like an absolute loser. I took the washing off the line and cried some more. Wandered around in a little circle becoming more agitated and sad. I don't know why it took me so long to realise that not everyone has our best interests at heart. I don't know why it was such a revelation to me to realise that the insurance company's bottom line was money, and that they had absolutely no obligation to cover anything they were even a little bit hesitant about? It hurt to have my child denied something that the majority of people take for granted. I have never been denied insurance before. I've never really even thought about it. To me, getting travel insurance has never been a big deal...I went with the cheapest option, my only concern lost baggage. Seriously. I have lived my life like a little cork bobbing around in the water, keeping afloat somehow, almost oblivious to waves or stillness, because things will turn out ok and nothing is serious because I pop up to the surface again, unharmed and ready for the next current to take me along somewhere. But now I feel the pull of something anchoring me in place and I realise that this is so much bigger than me. I realise that our lives are forever changed in ways I didn't anticipate and there will be more in the future that I still don't know. I now truly understand that Phil and I have to be Victor's advocates, and what this actually means. I suddenly know that I am not the same person any more and never will be again. I know I will lose friends. I know I will gain some too. I know that no one else will ever truly understand what we go through...but that works two ways, because I can never truly understand what life is like for someone else.

I calmed down and called PMH to get our letter sent out so we can get through customs with Victor's medication, and our lovely CF nurse suggested getting in contact with CFWA about travel insurance. I left a message for them but I'm not hopeful. Honestly at this point, I just think we might as well go without it. We'll get normal travel insurance for all four of us, and hope that Victor doesn't have any need to see a doctor for anything CF-related while we're over there. If he does, then he will still be able to get help, but we will have to pay for it out of pocket or discuss options with the hospital. Of course, I am fully expecting that he will be fine and nothing of the sort will happen: if I thought there was a chance of that happening, then we just wouldn't be travelling at this time. And we have checked with his doctor, who is happy for him to travel.

Although I was calm, I still felt unhappy and just exhausted after the morning we had. It just really threw me and so for the rest of the day we just pottered around the house. I took the boys outside to play for a while when suddenly I could smell cigarette smoke coming over the back fence! I couldn't believe this was happening. I am fairly certain it's our new neighbours because we have never had this problem before. I felt absolutely livid. And today of all days! I took the boys back inside and shut the windows and doors. Luckily they had already played outside for a while by this point so they didn't mind coming in, but still, I shouldn't be forced to bring my kids inside because someone is smoking nearby. But that's a different issue for me to rant about another time.

I wrote this on the day it actually happened, which was a few days ago now because I have been busy and quite frankly didn't want to keep thinking about this issue right now. We received a letter from the insurance company shortly afterwards, confirming what they said on the phone. It's there now in black and white in case there's any confusion. Phil and I glanced over it, muttered a bit, and threw it in the black hole of paperwork we have in our house. I'll probably see it again in a years' time and do the same thing with it. Whatever. I consider the denial of insurance to be just another example of ignorance (oh, there are so many examples) and I am not letting it get in the way of our holiday. We have a plan in place in case of emergency (Plan A, B, C, D and so on!) and we are setting the rules for our own life, considering we know our situation better than a company ever could. And I say that these boys are going to see their Grandma and that is final!

How You Can Help

Wondering if there is anything you can do to help a family or individual with cystic fibrosis? Here is a list that can be continually added to of things you can do to help right now:

• Make a donation to Cystic Fibrosis WA (or the Cystic Fibrosis charity in your country/state)
• Join or set up your own Great Strides team
• Create your own fundraiser, with proceeds going towards CFWA (or equivalent)
• Share details of an upcoming fundraiser on social media so it reaches a wider audience, even if you aren't donating yourself
• Share pictures, facts, blogs, any information about CF you find on social media and in real life to raise awareness
• Educate yourself on CF. Find out the facts.
• Quit smoking, or at very least, confine your smoking to your own property so that others are not forced to smoke along with you
• Register as an organ donor
• If you have your own business, donate a percentage to CF research, perhaps during May (which is CF Awareness Month).
• Learn how to perform physiotherapy (chest percussion) to help out a family by giving them a break now and then
• Learn how to administer other medications for a young child with CF to give the parents some time off
• Learn how to fat-match with enzymes and spend some time with a young child with CF
• If the person you know with CF is admitted to hospital, go and visit them. Bring something for the person with CF to do. If they are young, take over for a few hours to allow the parent to go home for a little while.
• If you know someone with CF in hospital, visit the family members left at home. Spoil any healthy siblings, who will be missing their brother/sister or perhaps feeling a bit neglected. Prepare a meal. Help hold down the fort for a while.
• Buy something from the CFWA online gift shop.
• Volunteer to help your local CF charity in a practical way.
• Make sure your immunizations are up to date. Needles don't stop in childhood! 
• Make sure your kids have had all their vaccinations.
• If you are sick with something contagious, especially something like the flu (or worse), stay home and look after yourself. Don't share the germs!
• Wash your hands more often.
• Ask the family how they are going. Listen if they want to talk.

You can also head over to our Facebook page: May is CF Awareness Month so I am posting a CF Awareness picture every day.

If there is anything else you can think of, post it in the comments and I will add it to the list!

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!

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 everywhere...it'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.

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?'.