On that note though.. Dylan has woken up full of cold this morning! No idea where he has caught it from but I guess it is just one of those things. He had throat swabs taken this morning so will wait for the results and keep an eye on him. Obviously after last time we aren't taking any chances so tonight both Mummy and Daddy are both staying and we have him back on regular observations, including us checking him more frequently than usual!!
He hasn't been needing oxygen in the day time since Wednesday but had needed it overnight the past few nights on just a tiny 0.1-0.2ltr due to him having mild sleep apnea (probably from this cold developing and restricting his airways). This tiny amount was enough to keep his airways open and for him to maintain 97-100% oxygen sats, tonight he is sat a little lower at more like 95-96% due to him being full of cold and his airways being more restricted, even his little nose is blocked up which is obviously where the oxygen is delivering.
Dylan did have a chest X-ray last night at around 9pm due to him appearing breathless at points and his sats occasionally dropping below 92 yesterday. Various doctors had listened to him but it was done to air on the side of caution and check exactly where he was at. It was all fine so that may have been the start of the cold that he has woken up with today or that Prof. Walker abruptly stopped his Sildenafil yesterday as opposed to weaning it off slowly so he may need time to recuperate from that too.
His sats today have been lower than they have been previously without the oxygen and his heart rate is a lot higher but that is probably down to this cold again and how hard his body is working to fight it. He isn't neutropenic yet, but we know after last week's chemo it may happen soon, luckily this is his week off now. He doesn't have a temperature though which is good, if anything he is probably slightly on the chilly side at points.
I guess my biggest fears right now are a relapse and him ending up back on the ventilator.. if he gets a fever he could have another seizure, if his airways close up he could require intubating, if this moves on his chest it could end up an infection and pneumonia again. All these worries are likely to keep me awake the next few nights and on edge the next few days. I suppose this will be what I will feel like every time he gets sick though, he is just so fragile and the absolute worst thing for him is a respiratory infection or virus as we've already witnessed once.
If I could wrap him in a bubble I would!
We've been given a slight timescale of how long his chemo regime MIGHT be.. he may not stay on this harsh protocol for a lot longer, depending on the CD25 results and if things are now slowing down. The original plan was June at least I believe so will probably see what happens after that but he may then go on to maintenance chemo. This maintenance chemo, when he does go onto it, will probably continue until he is 5 years old at least as that seems to be the age the disease usually burns out by and will decrease his risk of it reactivating again. That obviously means the next 2 years at least will be spent fighting this disease but hopefully he will be able to start nursery and school even if only part time.
He is doing loads better with his walking now, he is very very wobbly and can only do a bit at a time but finally has the confidence to try a bit more now which is good. He will probably need a wheelchair or a special buggy for some time though.
His DLA has been awarded which is great news and means I can apply for carers allowance and he will be entitled to a blue badge which will help us out no end if he isn't as mobile now as he use to be, especially with me now at 32weeks pregnant!
We have also received paperwork from Make A Wish which is very exciting!! They are just doing all their admin and checking out his medical records so hopefully he will be granted a wish through them to use when he is discharged and a little more stable.. I already know what he wants ;)
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