10 MORE Things To Pack..

If your child is admitted to hospital for a long stay, here is my personal recommendation of things to pack aside from the obvious clothes and toiletries..

1. Ready Meals.. particularly the chilled kind over the frozen ones, these cook faster (for when you don't want to leave your child unattended for long) and can be stored in the kitchen fridge as not all parent kitchen's have a freezer!

2. Caffeine!!.. hospitals can be tricky places to get a good night's sleep so make sure you take your caffeine fix, whether that be tea, coffee or Coca Cola. Most kitchen's have tea and coffee making facilities but you can almost guarantee they will run out at your moment of need!

3. Lunchtime Snacks.. bagels, crisps, cereal bars, fruit, chocolate!... anything that doesn't need to be refrigerated so you can keep it at the bedside and if you really don't want to leave your child's side you don't have to starve.

4. Chargers.. phone chargers, tablet chargers, batteries!!

5. Books or Magazines.. you may think you'll be too occupied with your child but trust me you will get bored! They'll be points where they are sleeping or just happy resting and don't need your full attention.

6. Potty.. if your child uses one at home then my advice is to take it with you!! Some hospital wards can have up to 20+ beds and only one children's toilet or one potty / plastic bedpan etc. and we all know how toddlers cannot hold it at times!!

7. Baby Wipes.. great for cleaning mucky faces and bums or generally washing if your child is bed bound. The wipes they provide often run out fast or are harsh on sensitive skin. Which brings me nicely to the next one..

8. Hand Cream.. the soap and hand gel used in hospitals is very harsh so take yourself some gorgeous hand cream to keep them smooth and crack free.

9. Flip Flops / Slippers.. you won't want your shoes on all the time, especially if your little one likes you to snuggle on their bed with them.. slippers and flip flops are quick to slip on and off! EXTRA TIP : shower room floors are often soaking wet through so flip flops are ideal to stop soggy socks!

10. Home Comforts.. yes the hospitals have toys and blankets etc. but children can feel very insecure in such a scary environment... my advice is to take 2/3 favourite toys and maybe a nice soft blanket (the fleecey character ones are fab for this) to make it feel more 'homely'. This goes for you parents as well, take yourself a blanket, pillow, photos from home.. anything to help you relax if possible as you will need to unwind at points no matter how hard it may seem.

xoxo

Update..

So Dylan had his chest drain out on Thursday and did another sleep study on Thursday night. They are concerned he has reached the stage where he might need to be sent home with oxygen so we are waiting on a decision..

They are keeping him in over the weekend for extra observations, hopefully we will know by Monday what the plan is!

Nurses..

Usually the nurses here are fantastic but every now and again we have an issues.. Dylan's nurse today has been absolutely useless! I understand he doesn't act poorly on the outside and that they don't always get time to fully read the pages of notes but to not even look at the basics is unacceptable!

It took 4 hours to get him to xray after they called for him because she was 'busy' doing the most trivial things. Then it took nearly 4 hours again to get the air humidifier that was requested by respiratory, again for no real reason!

And it has just occurred to me at nearly 8pm that his pain relief was missed off at lunchtime, now yes I should have noticed sooner but Daddy has been here too and we have been back and fourth doing things whilst there was two of us.. Thank heavens he obviously doesn't need it but he was a bit grumpy and had a 3 hour nap this afternoon and he was acting distressed when he woke up, I just calmed him down and tried to give him sweets to cheer him up. If I'd have realised he didn't have pain relief in his system I would have asked for it as it's when he wakes up it seems to hit him like a wall as his body relaxes..

Fuming! Can't imagine Daddy will be happy tomorrow when he gets back, he already lost his rag at her once today!

Getting There Slowly..

Even though it doesn't look like the chest drain is working, the air in the chest cavity is certainly reducing slowly so leaving the drain in today and reassessing in the morning.

Last night Daddy stayed so I could go home and do some of my washing and pick up some more bits I wanted etc. Plus so I could try and get a decent night sleep. The house felt so empty without both of the boys, I ended up sleeping with a blanket of Dylan's and having a bit of an emotional breakdown... I try so hard to stay strong in front of the children, in particular Dylan, so when I'm on my own I tend to snap and loose it all.

I wouldn't wish this on anybody, wondering if your child is going to make it to their 3rd, 4th, 5th birthday. Wondering how much worse they are going to get whilst waiting for a transplant. Wondering what genetic results we will get... The unknown is the hardest part for me, and at least when I'm at the hospital with Dylan I'm just focusing on the present.. 

Disaster!

Yesterday turned into a blur..

After unclamping the drain it was soon discovered that it had stopped working and Dylan was having difficulty breathing and tachycardic. Undressing the drain showed a blockage of blood clots and gunk, presumably from the pleurodisis.

After attempting to flush it 3 times, which was massively distressing for Dylan, it was deemed it was working 'a little' and his oxygen was turned up to compensate.

He is still comfortable this morning so unless things worsen we are awaiting the specialists to be back in tomorrow.

And to top it all off, my eldest now has chicken pox and he was here visiting yesterday!!

One Step Forward.. Two Steps Back

Dylan's breathing became laboured again after lunch and an xray showed his right lung has collapsed slightly at the top again. Clamps taken off for now and will reassess tomorrow. This doesn't necessarily mean that the Pleurodisis hasn't worked it just means the top part isn't stuck yet. Only time will tell...

Clamping..

Despite the fact Dylan is still in pain, his breathing seems ok and yesterday's xray showed his lungs were both fully inflated. So, the decision has been taken to clamp his chest drain this morning with a view to perhaps taking it out.

This little boy amazes me everyday with how strong he is and how he takes everything in his stride <3