Our Other Superhero..

So there is another boy in our life that deserves some credit.. and that is our eldest Bryce!

He is an amazing, strong, polite and helpful young man and I couldn't be prouder of him. He has handled all this fantasically well, despite clearly being frightened at times and confused. We've tried our best to explain things to him within his level of understanding.. He is so clever and picks up on everything even if he doesn't always show it outwardly to other people. 

When he came to see Dylan in ICU last Thursday he was visibly frightened, whether it was the tubes, the fact Dylan was comatose, the monitors, or just picking up on our fear and the fact he was kept off school and brought to his brother's bedside.. Children are so perceptive and I don't doubt he knew on some level what had happened and what might happen next..

When he came on Friday, Dylan looked pretty much the same but he had been moved into a side room for infection control purposes, Bryce still looked very concerned. I made sure I told Bryce "Dylan is going to be ok, he is going to get better.." and I didn't actually feel like I was lying! Bryce's face suddenly changed and whilst still weary there was a visible smile and almost sigh of relief. He then relaxed and started asking questions about all the different equipment and what it did, bless him!

Bryce has been able to spend a lot more time with his brother this last few days and they have been just beautiful together, it melts my heart! Last night I took Bryce home, as Mike did so the night before, so I could get some bits done and some rest.. I spent the evening wrapping birthday gifts though..

It is Bryce's 6th birthday and party on Saturday and Dylan will still be in hospital.. I feel sorry for Bryce in all this too, I've barely had time to do much present shopping at all! And, obviously Dylan nor Daddy will be able to attend his party. Plus, a lot of his school friends have not replied to the invites because they were sent so last minute due to all our hospital stays. I am trying my utmost to make it as special as possible for him still and I hope he won't be too sad! However, just to prove how super Bryce is too... with NO prompting from me he said he wants to save his presents from us, take them to the hospital in the morning so he can open them with Daddy and Dylan, and he wants to make sure Dylan has a present to open too!! How completely adorable and amazing is that! Then he said we have got some save Dylan some cake of course..

ICU - HDU

Today we got downgraded!!

We got moved from Intensive Care to High Dependancy after Dylan's chest and bone xray, which is massive step!

Realistically we should be moving onto an Oncology ward soon but they are being cautious because of Dylan's lungs being a "ticking time bomb" and the ease of being able to put new chest drains in quickly without the need for theatre when on ICU or HDU.. which is understandable.

We were still supposed to be visiting Great Ormond Street on the 22nd and were going to get transferred down there from QMC.. however, they are short of parent accommodation so it looks like Dr Aurora and Dr Spencer may actually be travelling to us at the QMC which would be very helpful and save a lot of trouble, but either way we are just so grateful for their help!

Dr Bhatt from respiratory at QMC seems genuinely shocked by Dylan's recovery..

He kept telling us on Friday how Dylan would definitely need a transplant asap (whereas Oncology were saying no he wouldn't), but today he actually said 'maybe' in a few years! To hear this from him is very reassuring as he is definitely more negative and weary of Dylan's condition and his lungs capability. But, only time will tell how Chemotharapy helps the bullae consolidate and how quickly this happens. The healthy lung tissue will never return but eventually should stop 'bursting' as the cysts will become scar tissue, but, that could take years with how many he has. He can, however, grow healthy tissue around these as he grows now the process should have been stopped by the treatment.. how much and whether it will be enough healthy lung for when he is an adult though? ..Only time will tell...

Here is our little superhero in his cape from Tiny Superheroes (www.tinysuperheroes.com) as ordered by his Auntie Sami.. he really is super!!

Fighting Like A Superhero!!

So.. since Dylan perking back up on Thursday he remained stable which meant I was able to attend my beautiful sister's wedding on Saturday which was lovely.. obviously I was sad not to have my husband and Dylan there but it was nice to spend time with my eldest son and see my sister get married. I was so proud of her..

Whilst I was at the wedding Dylan had a Hickman Line fitted and the left chest drain removed, after surgery they turned the background rate on the ventilator down and he started breathing over it. At 5pm all his sedation was stopped. At 12.30am Sunday they thought he was getting tired so they turned the background rate back up which actually woke him up fully and he tried to pull the tube out so he was extubated. He was fully "awake" and not sedated by the morning.. best Valentines Day gift ever!

He started suffering drug withdrawals.. he was very confused, shaking, hallucinating etc and got very agitated causing his breathing to become shorter which blew another bullae on his left hand side, so another drain was fitted. This time he did desaturate again but he did not need intubating and soon bounced back. They started him on medication to control his withdrawals and wean him down which seemed to work a treat!

Each day that goes on he becomes more lucid.. today he was pretty much back to his normal self except a little tearful. We have had lots of talking, eating and even some smiling!

Fingers crossed for more good days and progress!

Ups & Downs

Today has been a bit rocky to say the least..

When we arrived on the ward this morning they were just about to phone us.. he was critical again and we were told effectively to prepare ourselves. We phoned my parents and asked them to keep Bryce off school and come to us incase we had to say our goodbyes or we got transferred elsewhere for Ecmo as a last resort...

However, the little terror had other ideas and stabilised by the time they arrived..

Most of the day he has remained stable, chemo was started and they reduced some of his drugs. His catheter stopped working and they had to replace it during which he woke up so they had to resedate him to continue..

We went for some dinner and whilst we were gone they turned him (to prevent bed sores) and again he woke up and starting coughing and resisting the ventilator which caused him to desaturated and his CO2 to creep back up..

Once sedated he settled down within half an hour to an hour..

We have just left him for the night, I got no sleep last night and feel very unwell today, I just pray he remains stable overnight and that when they turn him again at 3am it doesn't undo any progress..

He is such a little fighter but the problem is at the moment he doesn't need to fight, he needs to relax and heal and let the machines help him.. not wake up and interfere!!

Praying, praying.. praying to whoever will listen right now..

Prayers

Yesterday my beautiful boy almost lost his fight. He took a rapid turn for the worse and we nearly lost him on the floor at playgroup.. had it not been for the calm and collected actions of one of the staff I don't doubt we would have done...

He is still fighting for his life in ICU at Nottingham's QMC with a bilateral pneumothorax and he is very weak.

Every second, minute, hour is torture but it is currently 18 hours post resuss and he is still fighting so I am praying for him..

Whether I believe in a god after all this is questionable, but the truth is we were at church playgroup and had we not gone I would no doubt have lost him at home alone by myself.. 

Most of all I am praying to him, pleading for him to fight this and pull through, praying his little body gets stronger and begging him to hold on..

We finally have a diagnosis for him.. it arrived, ironically, shortly after we transferred to the QMC..

Langerhans Cell Histocytosis

This means he needs chemo BUT if his little body is strong enough it is something he can fight and can beat at least unlike many of the other things we feared he could have.. I just hope this diagnosis hasn't come too late and I pray and pray to anybody who is listening to help him fight.. he is so brave and so strong and I have faith he will try as hard as he possibly can but I am petrified!

I was warned at Derby, before transferring to QMC, that he might not make it but my faith got partially restored when he woke up in resuss and tried to interfere with the doctors!! His consultant here has promised me that he will tell me if there is no hope.. at present there is, be it however small, but it still something..

I sit writing this at 5am because I just cannot sleep.. we are in a room straight across the hall from his bedside and I know they would call us if there was any change but I cannot relax and I cannot switch off.. this morning was too scary, too real, too fresh in my mind still..

Pray for him, pray for us.. <3

GOSH Appointment

Dylan's transplant assesment date has been confirmed today as the 22nd of February, two days after Bryce's birthday.

We've been advised to travel down on the 21st and prepare to stay until the 25th. Aside from all the tests, part of the assesment includes counselling for myself and Mike.

I am scared.. scared they might have some results back by then, but also scared they still won't know. Scared they are going to tell us our beautiful brave boy needs a transplant and scared of the risks. Scared they are going to tell us what we both fear deep down, that even with a transplant his life expectancy is short. Scared they'll tell us he can't have a transplant. Scared his condition is terminal, which part of us already suspects. Scared they will shatter our naive illusions of false hope...

I don't know how to deal with all this, I don't want to deal with all this!

I don't want to outlive my child, I don't want to imagine a day without him.. a day where I can't see his beautiful smile, kiss him, hold him and run my fingers through his hair. Smell him, tickle him, bath him, play games with him. I've made almost 3 years worth of memories with him, got to know his cheeky character and love him more every day and I want that to continue not be torn away!

I don't want to have to tell his brother that he is leaving us. I don't want to break his little heart! He will miss the giggles as Dylan crawls into his bed, the cuddles and kisses, the Baymax fist bumps and high fives. He will miss holding his hand on the school run, he will miss the dressing up, the puzzles and games. He will miss every single part of him and it's so unfair.

We will not only loose a child, we will have another that is broken.. and who knows how old Logan might be when that day comes. Will he miss his big brother? Will he be sad for hardly knowing him? Will he be too small for Bryce's attention? Will his childhood be spoilt with countless doctors and hospital visits, and two parents that are grieving?

There is no 'right' time to loose a child.. but I can't help thinking how this is all the 'wrong' timing with Logan on the way and Bryce still so young and innocent. I fear for my children more than myself..

This can't be happening, it can't be real!

Help me...

Difficult Decisions..

Dylan finally got discharged on Monday, very late in the evening. It took a lot of discussion but they decided to send him home without oxygen for now as his sleep study was ok. They do, however, want him to do a sleep study at home next Thursday so we've got to go back to collect a monitor.

On Tuesday we had a scan appointment which went really well. Afterwards I was referred to the hospital midwife as I have a low Papp-a result. This can cause slow growth, placental issues and surprise surprise pre-eclampsia. She then looked at all my previous paperwork and saw I had the same with both boys so that would make sense regarding the pre-eclampsia, but apparently they've only recently changed the process of monitoring the levels.

We also discussed Dylan.. this baby's (Logan) lungs looked absolutely fine on the scan after I asked them to double check. Professor Smith at QMC mentioned that if Dylan was born with such damaged lungs then they perhaps would have shown up as brighter on his scans, so the consultant on Tuesday looked through all the images from my four scans with Dylan and all looked normal.

I have another scan booked now for 23 weeks for reassurance, and they advised me to contact them if we get a diagnosis for Dylan before then. The question was asked if this is genetic and Logan has the same would we want to continue with this pregnancy...

I would be lying if I said the thought hadn't crossed my mind, but every second with Dylan is worth all the pain and misery.. as long as he isn't suffering then it is worth every single second and I wouldn't change it for the world so yes we would still continue to have Logan..