month 3 already wow.. we’re now 12 weeks after diagnosis.
Stanley will be 15 weeks old next week and the past few weeks (touch wood) things have been pretty good!
After our two week stay in the hospital for IV’s we are all settling back into our normal routine, when Stanley first came out of hospital we were up to 3 times a day of his PEP resistance mask and doing physio in between this also, we were up to 12 lots of mediciations a day, ng feeding aswell as bottle feeding and all in all it’s quite a lot to fit into one day! However now Stanley seems to be improving we’ve gradually decreased to one lot of physio a day, 10 lots of medicine rather than 12 and no extra physio in between unless really needed..this is the first time ever that we have been able to just do physio therapy once daily apart from for the short two days after his first clinic, and it really does make a difference, it means that most days we can get physio done in the morning and carry on the rest of the day as normal without having to think about fitting another lot in, he’s still really good with having his mask on his face, most of the time he will be very chilled out and have a look around whilst it’s on him which does make our life’s a lot easier and hopefully this continues as he gets older ( we can hope?!) we’ve now gone back onto the phropholactic dose of antibiotics flucloxocillin which along with his regular medicines now takes us down to 10 lots of medication a day.. a lot still I know but it’s a step in the right direction and we will take that!
His weight gain seems to be struggling slightly .. it’s hard not to take this one personally because we literally cannot feed him anymore if we tried! He is now having more calories than he ever has done previous,with having the high calorie milk and his duo cal scoops also providing extra calories, yet he’s still not quite meeting the weight gain he should..although he is still gaining which is a positive of course, he is now 11lbs6oz which is a massive difference from the tiny 5lb baby we had 3 months ago. His creon (enzymes to help digest fats) has now been increased again and after speaking with the dietician a few days ago it seems that the dose of sodium chloride (salts) Stanley is on is actually quite a low dose.. sometimes if there isn’t enough of this in your system it can have an effect on weight gain. So the aim is to get a Urine sample before his next clinic which is a week away and test the levels of this , if it happens to come back low this could explain the problem with the weight gain and his dose will then be increased which will hopefully solve the problem! Sometimes little things like tweeking dosages and different medications can make all the difference.
During the last week or so it’s been pretty hectic with appointments, as mentioned on the previous blogs last Monday the boys had there sweat tests.. Tuesday was health visitor for weigh in day.. Wednesday was the speech and language therapist.. Thursday we saw the dietician.. Friday we saw the CF nurse then Sunday was the Diana nurses and back round to this week it was more phone calls with dieticians and nurses, and more weight checks, and these are pretty much average weeks for us now. Stanley’s team is so involved in his care which means a lot of contact whether that be text,phone calls or clinics all in order to keep up to date with what’s going on, obviously we have Alfie’s appointments to and it just so happens the boys are now under the same people for certain things which means that both of there appointments can be combined into one which is really helpful to us and less time consuming in the long run!
The main thing that has been focused on this month has been Stanley’s feeding, on his two month update it was mentioned that Stanley had come home from hospital with his nasogastric feeding tube in place and the hope was that after having a chest infection in hospital it was just that his confidence had been knocked slightly with taking bottle feeds and that it would pick up again and the tube wouldn’t be in for very long atal, it now seems that this won’t be the case.. since Stanley was born we have noticed that he has been noisier after feeding in general, but due to his age and his diagnosis the noise and this constant cough seemed to have had been put down to other things, the fact that he was a c-section baby they always tend to have more mucus.. the fact he had CF was causing the cough.. But even with CF he should NEVER have a cough, this is why it’s so important that at the first sign of one, antibiotics are changed immediately to a full treatment dose in order to treat an infection should there be one there, physio should be upped to clear any secreations and so forth. Stanley at 14 weeks old had been on 10 weeks of a full treatment dose of various antibiotics including introveinus and yet he still seemed to have this cough!, speech and language therapy had assessed him whilst we were in hospital but obviously at the time he had an infection which can make it difficult to determined if something else is going on.. Alfie’s regular speech and language team were due to check up on him at home so they also came out to see Stanley last week and assessed again, it turns out his coordination is completely wrong when feeding.. basically a child of Stanley’s age should be taking around 3/4 sucks of a bottle then take a breath and swallow.. however Stanley is trying to breathe and swallow on every suck which is why he is becoming so tired when feeding and can give up feeding even when still hungry.. also the noise appears to be coming from his upper airways and from listening to him it sounds as though when feeding the feed isn’t going straight down into his stomach and some sitting on his vocal chords instead. Which obviously puts him at high risk of infections and aspiration, which is something you don’t want to happen to any child let alone one with CF, who should he get chest infections will do irreversible damage to his lungs.. so now after several weeks of ruling out the obvious me and Jack along with his CF team have come to conclusion that it’s time for the ears,nose and throat (ENT) team to become involved with his care and for a bronchoscopy to be booked in order for surgeons to have a proper look at his airways and find out what’s going on, until then the feeding tube stays in and we now have a plan in place in which he is taking more feeds via the ng tube rather than a bottle as this appears to be the safest way at the moment.. our boys hey .. will they ever do anything simply?!
Development wise we are still getting our daily doses of those beautiful smiles! He’s very nearly giggling ❤️ he roles over from his front onto his back although it seems to make him jump every time and he ends up having a few tears! Since the tubes gone in he’s sleeping for longer periods and is back to the very happy and content baby which aside from the doing the obvious each day you could very easily not know he’s there! He’s such a little treasure. We have been having some nice trips out.. family partys, long walks with Alfie looking for Pokemon which is most defiantly his favourite at the moment! After everything that’s been going on on recently it must have been a big change for Alfie to get used to, all of the trips to the hospital having people in and out of the house and just in general not having all of mummy and daddy’s attention as he had previously had for five years before, but even after all of that he still attended school every day and recently had a fantastic parents evening! His teacher said he is a delight to have in class (proves my theory he must save all of his attitude for home hey?!) and we couldn’t be more proud so it just goes to show between all the chaos abit of normality defiantly goes along way, he is still being the best big brother ever and Stanley adores him 💛💛
We aim to update the blog more frequently now at least once a week now that things are hopefully settling down slightly.. we would just like to say thank you to all of those who have made donations towards the raffle and auction for Stanley’s charity night, we are in the process now of contacting companies asking if they will help and we hope to have as many prizes as we can to make as much as we can on the night for the CF trust!
If you have any queries about the charity night.. how to get tickets, make donations or know anybody that will , please contact us.
Facebook: Get It Off Your Chest -Stanley’s Journey
Thank you 💛💜💛