So we realise we’ve been a bit quiet on the blog lately… sorry!
It’s been safe to say the past few weeks have been eventful! People may remember on Stanley’s 1 month update we had explained that after his last clinic appointment a cough had returned within a few days and he was then put on two more weeks worth of antibiotics , the first weeks worth seemed to help slightly but towards the end of the second week Stanley didn’t seem himself at all. He seemed to be coughing more, he looked poorly I always say him and Alfie get poorly eyes (not literally poorly eyes!) but you can always see it in there eyes when there genuinely unwell.. maybe a mum thing?! He was constantly being sick and not much was settling him and considering he’s usually such a happy and content baby we knew something defiantly wasn’t right.
After a day or so of him being poorly it was becoming apparent that he wasn’t getting any better so I had spoken with Stanley’s dietician and contacted his nurse and agreed to take him into the hospital the next afternoon, upon arrival the CF team came into see him right on time as always, it makes me so much easier not having to wait around and after checking him over it didn’t take long for them to see he didn’t look the same as he had two weeks previous , his cough sounded worse and in general he just didn’t look very well! They took bloods and cannulated him, he was then admitted for what we thought would be a few days of iv antibiotics a chest X-ray and scan on his stomach. Little did we know we would end up spending the next two weeks as an inpatient!
Chest X-rays , scans etc all came back fine which was positive! The original cough and viral swabs that had been taken had come back clear so doctors where abit stumped as to what was making Stanley so poorly, by the Saturday he seemed to have gone down hill quite quickly, his respiratory rate was at double what it should be, his ribs pulled in every time he was breathing, he struggled on feeds and was so noisy when breathing, by the time the night staff had come on his sats (oxygen levels) had dropped the on call doctor had to be bleeped and he was placed on oxygen and more bloods were taken, they are sent down to children’s intensive care and thankfully came back fine but he literally went blue! These babies do like to give us a scare don’t they?!
By the start of the week he seemed to have picked up again and by the Wednesday he was back downhill.. for a week he carried on up and down up and down – but by the end of the week we at least had some sort of answers as to what had gone on. Stanleys viral swab was sent off for a more in detail screening which came back that he had a common Virus – the rhinovirus and that’s more than likely what caused him to be poorly, thankfully it wasn’t anything serious and it just so happened that it had hit Stanley harder than it would other children.
I’m sure those who have the Facebook page have noticed that Stanley now has an added extra.. his feeding tube!
This isn’t something that was planned to happen, but over the last few weeks he’s not seemed to feed as he should and sounds quite noisy once fed, the ng feeding tube was put in just over a week ago now as Stanley was taking around half of what he should do of his feeds , it was border line but as it was coming up to a weekend the decision was made to put it in and good job they did as over that weekend he took even less feed orally, all in all it has seemed to help a lot. We have defiantly noticed the difference in him he’s so much more settled in between feeds, he sleeps longer at night and although it’s not ideal for him to have the feeding tube it does seem to be doing a job at the minute. We are pushing him as much as we can with his oral feeds as we don’t want him to end up avoiding them and hopefully sometime soon he will pick up with them again and the tube can come out, but as his cough had improved and he no longer needed any hospital treatments we decided along with his team it was best to bring him back with the tube in and be at home. Most of the CF team are very keen for the tube to be out asap but at the minute It’s catch 22 trying to encourage a baby that should be feeding normally to feed , but then not being able to physically make him drink a bottle that he just won’t take and without feeds taking so long that it makes it difficult to fit in medications and physio in between also.
A few people have now asked about how the feeding tube works, who puts it in? We decided the same as we did with Alfie to pass the tubes ourselves, it’s something both me and jack already knew how to do with having had Alfie using one in the past. I have now been signed off to do it again and jack will shortly also, it makes it so much easier. I can appreciate it’s not the nicest of things to do but if a tube was to come out and neither of us knew how to pass one it would mean sitting down the hospital or waiting for a nurse to put a new one in each time. We have nothing against those who choose to do this but for us the truth is we just don’t have the time!, between work and school runs, physio and medicines we didn’t want to be waiting hours on end for something that would take less than a minute to do ourselves.
Physio for now has been upped again so we are now spending 2/3 times per day on Stanley’s PEP resistance mask, we are also doing percussion physio which Stanley seems to find quite relaxing! ( it’s not something normally used anymore as stated before but it was something extra to add in whilst he was poorly) the mask can be quite time consuming, but it’s something he needs and that has to be done and when he’s better and fully recovered hopefully physio can be dropped down to once a day .. something we’ve not managed yet apart from for two days after his last clinic appointment.
Whilst in hospital we juggled a few things around and his milk has now been changed to one he finds easier to absorb, we now make up 7 bottles every morning for the day adding in scoops to his bottles which add extra calories to his feeds to help him to carry on gaining weight, medications were also changed around and he is now taking 12 doses of medicines a day! we really might as well start up a chemist!
So far though they all seem to be helping which is a positive after a bad few weeks. The longer we go after diagnosis and learn more about CF treatments, we have come to realise its really trial and error for a little while finding out what works for Stanley and what doesn’t, hopefully in a week or so we can come off the stronger dose of antibiotics he is now on and move back onto his normal ones and see how we go,
As for milestones he is exactly where he should be! everyone comments on what a happy and smiley baby he is, he’s seemed so close to giving us a giggle every now and again but still hasn’t quite managed it yet! he really seems to be making so many more noises now in response to talking to him which is very cute! We also unexpectedly had teeth appear.. very young I know but two of his top teeth have just started to break through so we’re now stocked up on teething gels and powders and hope they help!
We are due tomorrow to have both of the boys sweat tests done, this tests for the amount of salt in sweat from a small patch on there arms and the levels will confirm CF or no CF.( people with CF have more salt in there sweat) we already know Stanley defiantly has Cystic Fibrosis because both of his faulty gene types were found after his heel prick test, but the sweat test is something that has to be done to add the final result to confirm diagnosis. Alfie is having one also as they tend to test siblings as well even though nothing was picked up on Alfie’s heel prick when he was born.
One thing is for sure Alfie is defiantly happy to have his little brother back home with us, he came in every day to visit and hated leaving Stanley, he is fantastic with him and so loving towards him it really is lovely to watch them growing up together I couldn’t wish for them to get on better than they do. two brothers.. little best friends. ❤️
We were inundated with well wishes whilst Stanley was poorly, and people offering help towards fundraising and donating items/ doing things to help raise money for CF and we are very grateful.
We are now nearly 10 weeks after diagnosis and it truly does get easier, I think we’re now at the point where we have got our heads around it as much as any parent can and have now gone on to find our own routine as a family – life really does go on as normal, our two little treasures continue to make us both smile each day 💛💛
Thank you to those who continue to share the blog and Facebook page, for all of your likes and comments, it’s brilliant that people are reading and keeping up to date with Stanley’s progress the support has been fantastic!
We have now booked our venue to hold our charity night on the 10th February 2017 and we are now asking for anyone that would be willing to make a donation of gifts that we could use to auction off or raffle on the night to get into contact with us via the blog, Facebook or twitter pages.
Please take a look at the link on both the blog and Facebook for our JustGiving page to see how you can help! 💛💜💛