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

Boredom Busting..

Thank heavens for Daddy's laptop and it's array of films, today we've mostly been watching Disney Cars, Planes and Monsters Inc. Tv's are like gold dust on these wards and they've taken the bedside ones out this week, not entirely sure why! 

It frustrates me sometimes as it tends to be the older children that rush in the mornings to grab the Tv's and sit playing Xbox or watching movies at full volume all day, especially those that are mobile and able to go to the playroom where there are games consoles anyway! Then the younger, bed ridden children such as Dylan miss out.. hence Daddy's clever idea this admission to bring the laptop, yay for Daddy!

Surgery Time..

Due to the fact Dylan's lung collapsed again so quickly, the decision from Great Ormond Street was that they wanted the Pleurodisis done sooner rather than later. They decided after much discussion to allow the surgeons at QMC to do it on the right side only for now and take a biopsy at the same time.

He had the surgery yesterday at 3pm and already the lungs are both looking good so no major concerns aside from pain management.

He looked so fragile last night but is such a trooper! The first things he asked for were 'Mummy' his dummy, 'Bryce' then a banana!! No worries about him not eating or drinking that's for sure!

Back Again!

Monday 11th January we had a clinic appointment at the hospital, where the doctor advised me they were going to refer Dylan to Great Ormond Street Hospital. They had been in contact with them over the weekend and decided that Dylan's condition would need a lung transplant one day which GOSH would do, therefore they wanted to assess him and decide and further tests and surgeries such as biopsies and pleurodisis (sticking the lungs to the chest wall of sorts) to stop the lung collapsing should any more cysts burst.

The doctor advised me that it would take 4-6 weeks to hear from Great Ormond Street and that he would make Dylan a clinic appointment for in two months time..

Later that evening Dylan seemed a little distressed and I started to worry. He soon calmed down though and went to sleep. The next day he was up and down, one minute he was fine then the next seemed upset. The deciding moment was when he was complaining of pain from the cold on the school run, so I asked my husband to pick up a portable SATS monitor on his way home from work. When we checked him his oxygen levels were sat at 86% so we phoned an ambulance.

After a few crossed wires at the hospital and an xray, it was discovered that Dylan's right lung had collapsed again, and we were sent back to QMC where they monitored him overnight and then put another chest drain in the following morning...

Answers Pt.1

Fast forward to almost two weeks later and Dylan's lung had healed enough to do a CT scan. This in itself was risky as we knew his lungs were 'abnormal' and that another General Anesthetic would risk more difficulties, but the decision was taken that the benefits would out way those risks...

Now imagine the sight you would see if you looked at the lungs of a 50/60 year old smoker.. Dylan's were worse! His lungs were both covered in damaged tissue "cysts" called bullae which burst thus causing the collapsed lung.

Official diagnose part one.. Bullous Lung Disease but since they have no idea what caused it that is only a part answer..

Blood tests were taken and sent off to Sheffield for Genetic testing, as clearly Dylan is not a smoker and neither are we! His condition is almost unheard of in non smokers never mind in children, so he is somewhat of a medical mystery. With no other signs or symptoms we simply had to wait for the Genetic testing which can take months. So on January 7th, convinced his lung was all healed we were sent home with emergency instructions just 'in case' his lung collapsed again within the next few months whilst awaiting answers.

We enjoyed a lovely weekend celebrating Daddy's birthday and having a proper 'Christmas Day' with all the family...

Christmas 2015

Christmas eve we travelled down to London to visit my husband's family and exchange gifts. Dylan had developed a tickly dry cough two days before but nothing chesty sounding and he was happy and cheerful so we weren't concerned at all..

We arrived shortly before lunchtime, Dylan seemed tired but soon cheered up with some food and present exchanging. He was a little grumpier than usual on the way home and soon fell asleep.

Once we arrived home we did all our Christmas eve family traditions, leaving treats for Santa and Rudolph, sprinkling the reindeer dust, putting on new pyjamas and having a snack. Dylan didn't want his snack and got upset and made himself a little sick, but that wasn't overly unusual as he often did that. He went to bed excited to be moving into his big brother's bedroom and his new bed, and he slept fantastically.

Christmas morning was magical, he seemed happy and full of delight, opening all his presents with extreme concentration and taking the time to enjoy it all. Unlike his brother who just torn into everything at the speed of light!

Dylan went for a little nap before lunchtime as we were due to visit my parents that afternoon and I knew it'd mean a late night. When he woke up from his nap something just wasn't right..

His breathing seemed laboured, he didn't want his lunch and was tearful and distressed. I dropped him and Daddy off at the local Walk In Clinic and started to drive Bryce to my parents, I didn't even get quarter of the way before my phone rang...

His oxygen levels were dangerously low so they were taking him to the hospital in an ambulance. I quickly dropped Bryce at his grandparents and rushed to meet my husband.

They suspected a bad chest infection or pneumonia, however, a chest xray soon revealed something more serious. Dylan had a spontaneous pneumothorax (collapsed lung). We were transferred to the QMC in Nottingham so they could put in a chest drain in theatre. Another xray showed abnormalities on his lung, but further investigations had to wait until his lung was healed...

Happy Birthday!

On April 26th 2013 at 10:17am after a fairly short induction of labour, our second boy was born via emergency Caesarean section. He was perfect, needed absolutely no help breathing, and once I awoke from the General Anesthetic I held him in my arms and was breathless myself at his beauty. He looked just like his big brother and I was stunned as to how alert he was and how big! Weighing in at a chunky 8lb9oz I was thankful he was a c-section in some ways!!

My pregnancy with Dylan was fairly straight forward to start, unlike his brother Bryce with whom I suffered Hyperemesis Gravidarum for the first trimester. However, during the third trimester with Dylan the dreaded Pre-Eclampsia raised it's ugly head again, as it had with Bryce, and the decision was later taken to induce labour late at night when I was 39+6. They suspected Placental Abruption the following morning so that is why it ended in emergency Caesarean.

After a short stay we went home, a happy family of 4 now with no worries or concerns and excited for our future!

Fast forward 2 years to October 2016 and we conceived again! This time took us a few months of trying, unlike the boys who were both conceived the first attempt. We were thrilled, excited for our third and final addition and looking forward to our last Christmas as a foursome, little did we know the world had other ideas...