baby · cysticfibrosis · journal · mum · mummy · parent

Cystic Fibrosis – First Clinic Visit

Fletcher had one of his first of many clinic visits yesterday. This brought a lot of bad memories flooding back, which felt really odd. We also signed him up for a research study that they are testing on CF infants which can help future generations.

Our second trip to the hospital felt really odd, as we entered the building and got in the lift, (of which has a repeat recording of Wallace and Gromit playing over speaker, which im sure will entertain our son in the future, but more than likely irritate us) and we took the long walk down the corridor to the room in which we got told Fletcher’s condition. The last time we were here, we we’re being told our precious baby had a genetic disorder, so naturally this place brought nothing but dread and fear. Luckily, the clinic we will have to visit regularly wasn’t actually in the same location in the hospital, we had to go to a different level which felt better as it wasn’t the place of bad news anymore. It still felt odd to look around at all the toys and the children playing in the waiting room thinking, one day he will be just like them, playing with the toys, talking happily to the nurses and this place will become somewhere he will feel comfortable and sometimes unfortunately he may feel uncomfortable visiting – thinking he will have treatment sometimes or tests or whatever he may have to go through. Ultimately this place will become a normality.

Every 2 months Fletcher will have to have a clinic visit and they will do a variety of checks. He will be weighed, they’ll also measure his height and oxygen levels. All was well on his first visit, he is 7 weeks old and currently weighing 11lbs 3oz (his birth weight was 7lbs 10oz). They said he is a long boy, (can’t remember the actual measurements) so I reckon he’s going to be tall like his daddy! They also took a cough swab by tickling the back of his throat with a cotton bud, which would make him cough on it providing them a sample to test. They do this to see if Fletcher has picked up any infections that could affect his lungs and perhaps give him a chest infection. As ultimately that’s what CF is about – they can easily get chest infections which is what can slowly deteriorate their lungs. I’m speaking based on what we’re learning about the condition as we go, I could be talking out of my ass really, but this is my understanding of it at present. The results from the swab will come back next week and hopefully it will be clear. I have my doubts currently because Fletcher has tonsillitis, so I just have a feeling that he will have picked up something or may need antibiotics for whatever reason. Especially because he’s not been himself lately, he’s been very miserable. I can tell he’s in discomfort, poor fella!

As well as his routine checks, we spoke to a consultant regarding a research study we were told Fletcher could take part in. I’ll do my best to explain this as simply as possible – as it is a little confusing, even for us. The aim of the trial is to determine the safest and most effective way to treat infants with Cystic Fibrosis with antibiotics. At the moment infants in the UK are prescribed an antibiotic, usually flucloxacillin, every day to prevent infection with a bacteria called Staphylococcus aureus. Although this approach appears to help prevent SA infection, there is a worry that it may make earlier infection with other bugs, such as Pseudomonas aeruginosa (PsA) more likely. This trial is designed to test if infants with CF are more likely to get an earlier infection from PsA if they are taking flucloxacillin on a twice daily basis (“Prevent and Treat”) or Antibiotics in a more targeted manner when they develop a cough/cold (“Detect and Treat”). (Yes I did just copy and paste most of that)

If patients want to participate in the trial then they will be randomised into either Group 1 (prevent and treat) or group 2 (detect and treat). We agreed to take part as we want to help progress research to help future generations. Fletcher was randomised into group 2, and so this means he won’t be given the antibiotic and he will just simply get them only when he actually gets an infection rather than beforehand. This makes life easy for us to be honest, we won’t have to give him antibiotics on a twice daily basis, and apparently it doesn’t taste very nice. We already give him 2 different liquid vitamins every morning, one of which is bright yellow and smells like marmite, so he often dribbles this back out in disgust, which means I have many yellow stained bibs.

We also spoke to the physiotherapist and dietician whilst we were there. The physiotherapist was asking us how were getting on with Fletcher’s physio, which is going well. He tends to fall asleep whilst we do it, so he’s obviously not bothered in the slightest at the moment. He may start to object to it as he gets older, keeping a toddler still for long enough will be challenging I’m sure! The physio we perform on Fletcher is easy, it’s basically like winding him but instead, we have to pat him around his lungs for 15 minutes a day. This helps to move the mucus off his lungs and hopefully help clear them. As he gets older his physio can be something as simple as jumping on a trampoline or running around getting out of breath. So we have to force exercise on to him from a young age as it will benefit his lungs. We spoke to the dietician about Fletcher’s feeding habits. Such as how often he is feeding and how much I can express. She explained how as he gets older they will help us during his weaning, she said that he may need more calories than most babies and they sometimes advise to wean earlier than the typical 6 months. All things considered obviously, such as his weight gain.

Our next appointment is at the beginning of August and so yeah… here come the regular trips into town. Meaning lots of car parking charges, (which aren’t cheap considering each trip isn’t a quick one) lots of quick lunches at McDonald’s or Gregg’s (maybe we ought to bring a packed lunch in future), and lots of mumbo jumbo CF information that can at times confuse us. I think Fletcher must have enjoyed the day as he cried his heart out all the way home. I’m surprised I didn’t dislocate my arm as I kept trying to single handedly stick his dummy in his mouth from the front seat. Traffic lights aren’t fun as it is, but worse when you’re dying to get home and comfort your screaming baby!

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