Today we had Arlo’s Children’s Clinic. We attend this about every 6 to 8 weeks now, although it was a lot more frequent for the first few weeks and months after his diagnosis.
Normally the appointment would be face to face at the Royal Berks Hospital but for the first time this one was virtual.
We were told that if we had any concerns at all about Arlo then there was always the option to go in for a face to face appointment but since his cough from last week hadn’t gotten any more persistent or productive we stuck with a virtual appointment. Seems like a no brainer to avoid hospital right now. And it’s much less disruptive to Arlo’s day.
Next time they want us to go in so I will do a set of photos and Instagram stories to walk you through what clinic is like when we do go into hospital. But all the crucial things that make up a clinic were still there in this virtual version and I will walk you through it in my blog below.
There’s actually so much we have to cover when we catch up with his team - it makes me realise how much we are doing and monitoring on a daily basis for Arlo.🙏
Here’s your walk through guide to children’s clinic for wee CF-ers:
Weight and height measurements:
Normally the first thing we do when we walk through the door at the hospital clinic (after our temperatures have been taken of course!) is go into a weighing room where a couple of nurses will ask us to get Arlo naked and pop him on two machines that weigh him and measure his height. These numbers are then fed through to Arlo’s CF team.
For the virtual clinic, the team asked us to weigh Arlo at home using regular scales! A little less scientific and maybe not 100% accurate but it did the job and gives the team an idea of how Arlo’s weight gain is tracking. When Arlo first started on the digestive enzymes, he jumped up a number of centiles for both height and weight which showed how well the enymes were helping him to absorb the good stuff in my milk. Now he tracks nicely around the 90th centile and they are really happy with his weight gain and how tall he is! He’s so long!🙈
One way system:
Once Arlo has been weighed and measured, the nurses show us to the room where Arlo’s appointment will take place. It is a one way system when we go in to the hospital and we never see another patient. This is very well designed and completely intentional to keep all the child patients safe - even before COVID this would have been very similar. Every patient has their own room and they are kept very separate from one another. We are able to get Arlo comfy once in his room and we can get out muslins (for any dribble!) and toys to keep him occupied while we wait for his paediatrician to arrive. Clinics can go on for well over an hour so it is good to have some toys to keep the wee man happy. Although he does like to smile at his team as they each pop in to see him!
The virtual clinic was rather different and done from the comfort of our lounge!
Update with his physio:
Arlo has 2 physiotherapists allocated to him. We always speak with either one or both of them at clinic to talk about how Arlo’s PEP is going, how he is responding to the physio and any concerns we may have. They also advise us on other activities we could do that are appropriate for Arlo’s age that would be beneficial to his lungs and overall health. For instance, bouncing him on a gym ball or putting him in a bouncer like the one we have in the kitchen.
Today was no different at the virtual clinic and they are pleased with his daily physio - it’s hard work for Arlo doing PEP twice a day but so rewarding to hear that we are doing everything right for Arlo!
Cough swab:
Normally the physio team would also take a cough swab. This is to detect any bacteria in Arlo’s lungs. CF patients can be harbouring a particular bacteria in their lungs without showing signs of infection such as coughing. The aim is to catch this as soon as possible to prevent a serious infection from developing and to prevent any damage to the lungs. You have all seen the COVID tests and this swab test is very similar. It’s effectively an extra long cotton wool bud that is put to the back of Arlo’s throat until he coughs a few times on it.
As today’s clinic was virtual, we were sent a kit to do this at home and then Martyn had to drive to drop it off at the lab at the Royal Berks Hospital. We have done this before - we had to do this for Arlo over Christmas when he isolated staphylococcus. He is so good with it. Such a legend!😘The results take a few days to come through so we won’t know until later this week if anything showed up on the cough swabs we took yesterday.
Update with his dietician:
We meet with his dietician at clinic. She assesses how his weight gain is tracking on his charts and we mostly go over Arlo’s creon (digestive enzymes) dose. There is a maximum amount of creon that he can have in a given day that is calculated some way using his weight (our lovely dietician does the maths so don’t ask me to explain further!!). But as I have said it is more of an art than a science, so some patients need to go right to the top of their limit to keep their weight up and others can be on a much lower dose and still be gaining weight nicely. We have increased Arlo’s dose every time we have been to clinic so far and he has gone from half a scoop to two full scoops with his milk feeds.
Now we are weaning the dietician is also able to offer advice on when to give creon (with meals that contain fats and protein) and she is also a star at just giving general weaning advice at the moment.
Update with his paediatrician and specialist nurse:
Of course we also have an update with his paediatric doctor and his specialist CF nurse. I am constantly texting his CF nurse with updates on Arlo’s general health and any concerns I may have in between clinics. We speak most weeks and she always talks through any concerns over mucousy nappies or nasty sounding coughs or issues with medication etc. She can always pass me on to anyone else in the team if needed between clinics.
But we only tend to see Arlo’s paediatrician at clinic (and long may it stay that way cause it means Arlo is doing well!) We speak to Arlo’s Doctor about all of his progress. We talk about anything from how he is responding to his prophylactic antibiotics, how progress is going with Kaftrio becoming available for under 12s, how Arlo is developing, etc. etc. We focus on the CF things but also other things. For instance, between 2 and 4 months Arlo had a slightly herniated belly button and his Doctor was able to confirm that I was right in thinking it was a herniated belly button and reassured me it would most likely go away on its own!
The only thing different with a virtual clinic is that his Doctor would normally listen to Arlo’s chest. So if the cough swabs show any infection we may need to take Arlo into hospital for an examination which would include the team listening to his lungs.
So that was your walk through!
If you made it this far then you’re either very bored or very lovely and caring and want to know what Arlo has to do at clinic!!😂💕😘
Comments