Thursday, May 23, 2013

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.


  1. Those birthday photos - he's an absolute angel! I
    hope Victor does show that 'dramatic improvement' soon and you can safely move ahead with your travel plans. My heart goes out to you Lauren - you're such a good mom. This may sound crazy, but you're in a tough spot, and it's an idea - it's almost like you need a hypnotist, a baby whisperer, or some kind of behavioral psychologist, to maybe give you tips on how to calm Victor down when using the nebulizer. Or scour the net - other CF parents may have some helpful suggestions. Again, just an idea.

    1. Thank you :) We have a psychologist as part of the CF team available, I completely forgot about that actually...perhaps she would be able to help? The poor thing starts crying as soon as he sees the nebulizer :(

  2. Here's a few places to investigate - Good luck!

  3. When our daughter started neb treatments, she was 9 months old. We wrapped her (arms and all) in a fleece blanket, tightly. It felt a lot LESS like holding her down and more like a cuddle/swaddle. It took her about 3days to stop fighting, but we used the blanket for a few weeks. She is 3 yrs old now and does treatments ALL the time with no complaints. Best of luck and have a great vacation. I enjoy reading your blog!! (CF MOMMA from NY State)

    1. I love the idea of swaddling in a blanket! We are lucky, he's so much better with the neb now (amazing what a few days can do!) but it was definitely traumatic to begin with! He's about to finish up this course of neb treatments and I don't know when he will need to use it again so we could be starting over next time we have to use I will be keeping this trick in mind for sure! Thanks so much for the tip :)

  4. Oh I just stumbled upon your blog. I too am a mama to a brave little cfer. Our beautiful girl is now 11. It's still early days for your cf journey and although it never gets easier I think you do get your head around it, so to speak. Fingers crossed your little guy is on the mend fast and your family enjoys a happy and healthy holiday. Leax

    1. Thank you! Hope your daughter is doing well too.


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