so after being in hospital again all week we are now officially back home!
This week seemed to go a lot slower than when we had previously been admitted, I think it might have been that this week we just didn’t know what was going on, at least when you start a course of iv antibiotics you know that it will be a 14 day course and so you are prepared to have to stay in, this time however we went from one extreme to the other most days,last Sunday we had found blood in Stanley’s nappies and so by the Monday we were in hospital, bloods taken to try and find out what was going on, a cannula was put in but wasn’t necessarily needed and we were stopping in the night for observation.
By the Tuesday it seemed like we were back to square one again Stanley’s cough had improved so much but after physio coming round that morning it had completely changed and he had a wet mucusy cough once again, the doctor came to examine him and decided she wanted him on iv antibiotics she wasn’t happy with the way he sounded, although bloods came back normal which was a positive!, when going to put his first dose of iv’s in his cannula came out so another one was put in and another and another.. after having so many in on his last admission he is just becoming so hard to cannulate and to get them to stay in long enough to be able to do anything with them. For us it’s not nice to have to have needles let alone a four month old baby who doesn’t understand what’s going on and after speaking with the doctors we decided enough was enough.. it’s unfair to put him through effectively being a pin cushion for something that’s not even working!, but he still needed iv’s which meant having a long line put in, basically just a longer version of a cannula. They usually stay put and for longer but they are tricky to get in and can mean having to go down to theatre depending on what sort of line would needed to be used. By this point the team has gone home it was out of hours and so this just wasn’t possible to do, the nurses spoke with doctors on the ward and he had an I.M dose of antibiotics, this is an injection in the muscle at the top of your leg it leaves a horrible big bump! but the dose covered him for 24 hours and only had to be done once.. better than being poked and prodded trying to get a cannula in!.
The next day Stanley’s consultant came to see him along with one of the CF nurses and after speaking and him examing Stanley he decided to keep him on the oral antibiotics he had already been on previously and to see how we got on, it saved having to try and get a line in if we could possibly do without one, so the plan then was to see how he went the day after and home Friday, which we have achieved! BUT he still after a week has blood in his nappies, after doing bloods again and them coming back normal again for infection, it seems to lead us to think that something in the gut is becoming irritated but we’re not sure why or where it’s coming from, the dietician has now tried changing his milk again in order to see whether he maybe has an intolerance to something however I don’t think many people in the team are convinced that this is the cause, more it’s being tried just so that it can be ruled out. Anyone that’s stayed in hospital knows not much happens over the weekend so we have been allowed home but we have to go back on Monday morning to see how we have got on over the weekend, Without tempting fate I have a feeling we might end up being back in again! every single nappy being changed still has blood in and I’m not sure how long exactly this will be allowed to carry on for before having to do more tests to find out exactly what’s going on obviously we are hoping that’s not the case though and that we can find a cause without him having to be admitted again.
Stanley has remained happy still even with everything that’s gone on and he very much enjoyed all of attention from the staff on the ward this time especially the ladies! infact he was quite happy when the play team were painting his feet to make a picture as you can see he was very laid back and enjoying himself!
One positive from being an inpatient was that we got to see teams that we otherwise would have had to wait to see as an outpatient in clinics, we saw the Gastro team who have confirmed what we already knew in that he has reflux, Stanley is going to have a ph study test which will determine exactly how acidic it is, effectively telling them how severe it is..along with a barium study which is also known as a contrast test, dye will be put down his feeding tube under X-ray for them to see exactly where the feed is going and whether there’s any twists or blockages in the gut also. We also saw the ears nose and throat team and they are now trying to get Stanley under the same consultant as Alfie, him knowing Alfie’s condition already will make it easier rather than having to go over past history again to someone who’s never treated Alfie before, we are unsure of whether Stanley might have something similar to the condition Alfie has which might explain why he struggles to swallow and feed. He is now being fed completely via the ng feeding tube and takes no oral feeds at all. We are now waiting for him to be booked in for a bronchoscopy to look at his airways and Gastro will also take a look whilst he is under general anesthetic so that it saves him having to be put to sleep more than is needed! Our boys hey they don’t likes to do things by halves!
Another plus is Stanley is now going to have his own chair! hurrah! It’s not something he has ever used before he normally sits in his bouncer or swing but they don’t allow him to sit completely upright and there not great for posture, so in the week after speaking to physio they said they would have a chair for him to try and he loved it! He is really strong all his muscles are working as they should but he was able to sit upright (you can change the position to sit however you want as the chair is attached with Velcro) which can only be a positive for his chest especially when having a cough and he was quite happy being nosey and being able to look around properly! physio came into us on Friday and said they had ordered one for us at home and it should be here within a few weeks which made Stanley happy as you can see!
And as ever big brother Alfie was in to see him every day after school and didn’t leave his side until it was time to go at bedtime, he honestly is the best big brother infact we seem to have to tell him to slow down on the kisses and cuddles! Stanley doesn’t seem to appreciate being squeezed every two seconds haha! but I just love how much he loves him. 💙
When Stanley was first born I put a quote up “because I have a brother, I will always have a friend” and It’s true they are little best friends ❤️ Alfie is defiantly glad to have Stanley back home again judging by the selfies I’ve found of him and Stanley asleep on my phone! 💙💙