Three Weeks..

Today marks our longest admission so far and I dread to think how much longer it is going to be still..

Today he had his 4th dose of his first chemotharapy drug Vinblastine, yesterday they also started him on another type that he will have for 5 days this week then a 3 week break. He is on steroids daily and they are monitoring his blood counts to ensure non of his levels drop too low. He is also on lots types of antibiotic, anti sickness, antacid, folic acid and iron supplements to boost his blood production and prevent the need for transfusion (just incase he needs a transplant one day) but the iron is making his tummy sore at points. We don't have any major hair loss yet, just a few strands falling out here and there but hair loss is a small price to pay if the treatment works.

He had a new left sided chest drain on Monday morning after it became dislodged again overnight and he had a new pneumothorax. It doesn't look like the pleurodisis has worked yet but only time will tell with that one. He also decided last night and this morning that he didn't want the two right hand chest drains in and they both came out all by themselves, which was fairly amusing! They then clamped the left drain to see where we were at with both sides.. The right hand side is VERY slowly reaccumulating but not enough to put a new drain in yet so the overnight plan is to pop him back on oxygen to help it reabsorb and reassess both sides in the morning, obviously if he worsens overnight they will deal with it accordingly.

We are waiting for Oncology and Radiology to have a discussion about another CT scan to get a baseline of where we are at now, as obviously Dylan's lungs will have gotten worse between his original scan and the date treatment started. However, it appears they can actually see a marked improvement on the most recent X-rays compared to those from December / January and even compared to the one from 11th February so this is amazing! Now obviously we know that just because the cysts are resolving / bursting doesn't mean it'll be healthy tissue left behind, those parts will always be scarred, but hopefully it'll make it easier to see how much healthy tissue his lungs actually have. Plus less cysts = less collapsed lungs eventually and maybe one day it might even stop happening altogether, fingers crossed!

What we need now is time.. time for the treatment to consolidate all the cysts, time for the cysts to stop bursting and the lungs to stop constantly collapsing and as it stands we have that time, Dylan is doing extremely well despite all obstacles in his way! The biggest issue at present is obviously the constant pnemothoraces but I cannot fault how swiftly and efficiently the team dealt with it all on Monday.. and we now have a plan in place, so if they continue to be managed properly then eventually, slowly we will get there... 

As the PICU consultant said today.. "We aren't out of the woods yet but the trees are definitely clearing.."

This Is Our Normal Now..

People keep asking me if Dylan will be home soon, and that now he is on treatment they hope things will get back to normal soon. It's a lovely sentiment and it makes me smile to know people are thinking of us. I find it difficult to respond at times or say the right thing, I think unless you've ever been in the situation it's hard to understand the implications a long term and life threatening disease has upon a family and what they consider to be 'normal' or for how long that will last...

Chemotharapy for example can last anything from 6 months to 6 years plus. In Langerhans Cell Histiocytosis it is not uncommon for treatment to be up to 5 years! This means more than just 'hair loss' it means stomach problems, bowel problems and soreness, muscle aches, sickness, infection risks, decreased or increased appetite and general fatigue amongst other symptoms depending on which type of drug you are on.

Dylan's constant collapsed lungs, these are happening daily now and whilst eventually it should slow down now new cysts cannot form, this process can take MONTHS. Whilst this is happening he needs constant tubes to drain the air from his chest or it can compress his lungs causing respiratory failure or even compress his heart and cause cardiac arrest or worse. These tubes have to stay below heart level as they are water sealed to prevent air going back in. This means he cannot leave the bed properly, run around, or even go and play in the playrooms.

This is but a glimpse into our life at the moment, and we are only 2 months into a very long journey...

I have only slept in the same bed as my husband for a maximum of 14 nights since Christmas Day 2015.. or even under the same roof for that matter!

We spend one night at the hospital with Dylan each, then swap and spend one night at home with Bryce..

The house feels so empty!! Bryce goes to sleep in a bedroom with an empty bed in it, a bed that his brother only moved in to on Christmas Eve whilst poor Dylan sleeps in a hospital bed away from all his family, as there is no bedside space in HDU only parent rooms down the corridor.

Bryce and Dylan don't see each other 5 days a week, there just isn't time to sit in the rush hour traffic back to the QMC after school and then be back in time for dinner, homework and bedtime.

Dylan is scared, confused, bored and in a strange environment being poked and prodded and he only gets the comfort of both his parents in the same room for 4/5 hours a day at a time before one has to head back to fetch Bryce from school. Bryce also only has one parent at home with him each night / morning.

Mike isn't able to work at the moment..

We have another baby due in June and haven't brought a single item yet. All the boy's old clothes are still in the loft, the nursery needs re-painting, we don't have a pushchair, bottles, steriliser, baby monitor or even a crib anymore and we just haven't had the time to get anything yet! To be honest it has been the last thing on our minds.. it felt like all the excitement of a new baby was ripped away from us at only 3 days after our 12 week scan when Dylan first became ill..

Dylan's birthday is in 2 months.. He missed Bryce's and will no doubt be spending his special day in his hospital bed..

THIS is our 'normal' now and could be for quite some time.. it is exhausting, emotional, stressful and downright lonely at points BUT I would rather have it this way than not have Dylan still with us at all..

And that's what it is all about I guess, putting life into perspective despite the struggles we all face daily <3

Pleurodesis Take 2..

Yesterday the decision was made to fetch Dylan off his oxygen, it was clearly the right decision as it appears his sats are actually BETTER now than they were last admission which is baffling! I guess what this could mean is with all the cysts bursting and treatment going on that his lungs are working slightly better now and less 'stiff'?! Here's hoping!! Oh but doesn't he look beautiful without his nasal cannula in...

They also decided to do a double sided pleurodisis this morning at 8.30am.. this was a massive shock to us as we thought it'd be a long time before that was even discussed let alone booked in! The surgeon that did his previous one weighed in on it all and decided he would do it in the ICU department under ketamine again so not even in theatre! This again surprised us, but it is a fairly simple procedure that uses the chest drains already in place to put the solution inside the cavity, and it minimises the risks associated with his lungs and general anesthetic.

He had the procedure done and has been fantastic ever since! Minimal discomfort and happily playing away despite the chest drains. It'll take some time to see how effective it has been, but it's not like we are going anywhere any time soon! Truth be told it probably HASN'T worked as he should technically be feeling at least some discomfort and it looks like all of the solution has come back out of the lower right side drain which is frustrating. There is always the option to try again though whilst we are still here..

Two Weeks

So, it's been two weeks since Dylan's episode..

That's two weeks since I thought my baby boy was going to die in my arms..

Two weeks since I was repeatedly told he wouldn't make it..

Two weeks since Mike had to fly back from Barcelona early so he could say goodbye..

Two weeks since we were told his only option was Ecmo (temporary lung bypass) or transplant which he was too sick for anyway and wouldn't have survived..

We have had our ups and downs along the way..  He currently has three chest drains in after needing an extra one on his right hand side yesterday. He is still on 2ltrs of oxygen but that is mainly for helping healing not through necessity. He is physically and mentally back to where he was prior to his episode despite the constant bursting cysts and the original worry of brain damage from lack of oxygen..

Today Dr. Helen Spencer from Great Ormond Street Hospital came to visit us here at the QMC. She is the transplant consultant for GOSH and was here to do his transplant assesment that prior to his episode was booked for Monday the 22nd. A lot has changed since that appointment was made, we now have a diagnosis and we are on treatment to stop the disease but unfortunately that will not reverse the damage already done. She told us a lot of information we had already researched ourselves.. lung transplants are not a cure, the life expectancy after one is not guaranteed but their median expectancy is now ten years with 60% surviving that long. If he gets listed there is no going back, we cannot change our mind if a set of lungs become available and risk wasting them as they are so valuable. Lungs can become available within hours or years and there is no way of predicting that so we cannot leave the decision until the last minute or it may be too late. There are many many risks with the surgery and afterwards as it is a very complex and serious operation taking up to 12 hours or even more. It is not a decision to be taken lightly and we need to seriously think about whether we want to go down this route or not..

If it was clear that it was the only option we would go ahead, myself and Mike had discussed this previously at great length before his diagnosis when we thought he was terminal. It sounds selfish in some aspects putting him through such a serious procedure if it might only give him a few more years with us but we only want what is best for him..

However, it is not a decision we need to make right now! As it stands, in her opinion, he is NOT a candidate for transplant at the moment and it is important that we give the treatment chance to work and see how well it works first.. This was actually the first thing she said to us before the assessment began and it was a breath of fresh air! We were worried we would be pushed in to making that decision today based on how bad he was on the 10th, but the fact he has 'recovered' back to where he was prior to that is very promising.

This means we can consider more effective methods of pleurodisis to stop his lungs collapsing and that as long as his lungs eventually stop collapsing and the cysts stop bursting, he should cope for now with the amount of healthy tissue he has available. Whether that will be enough in the long run is a question nobody can answer, it is just a wait and see, but for now he is doing ok!

Expect The Unexpected

So apparently having two 'working' chest drains in isn't enough peace of mind.. especially if the left one isn't working again at the point it is needed!.

Dylan burst another left bullae last night and the chest drain wasn't working again.. it was a slow leak luckily and got worse gradually resulting in a new drain at 3am ish. Dylan really likes keeping us on our toes and giving us sleepless nights, so the title of this blog is apt really!

They wheeled him back around to ICU to do the drain in the end as things just weren't getting done on the ward and people kept getting crossed wires or not reading all the information. We are staying on ICU/HDU until all the departments can have a meeting and sort out some strict protocols and procedures for dealing with him when he has a pneumothorax.

He is fine in himself and both drains are working nicely for the moment. Dr Spencer from GOSH is still coming Wednesday morning so tomorrow he will have all his tests in preparation for that which he won't enjoy but it has to be done!

Despite having a rough night last night he has refused to nap today and has instead spent most of the day eating! I think the steroids have well and truely given him the munchies that's for sure!

He is asleep now, hopefully he will stay settled and we will have a peaceful night fingers crossed!

Downgraded Again!

Yesterday was Bryce's birthday and in the morning we went to visit Dylan and Daddy at the hospital with his presents (and a present for Dylan) just as he had requested. It was lovely watching them together, Bryce kept letting Dylan open his presents and had taken him a party bag and a cupcake.

Despite having two 'working' chest drains in, Dylan's right lung was still deflated so shortly after myself and Bryce left at 12.30 they resited it and it started working much better!

Bryce's party was fab! He had a few no shows but there were plenty there and everybody seemed to have a good time. I had lots of help from family and I couldn't have stayed sane without them! Bryce got lots of lovely gifts and is very grateful to everybody.

Once arriving home and after Bryce had opened all his gifts from his friends, I was informed by Mike that Dylan had been moved onto the Oncology ward! This was the good news I had been waiting for all day as it officially meant he was over the worst of our ordeal and stable enough to begin a long term care routine.. Obviously he will have more pneumothorax and need chest drains putting in for a long time to come but they have a plan in place now that seems to be working so hopefully the risk of him crashing like he did before is minimal now.

Myself and Bryce went back to visit him today and take him some gifts people had dropped off for him, including some 'wiggly bags' for his Hickman line. The ward is absolutely lovely.. it's like a private hospital! Dylan's tv isn't working but they should be fixing it tomorrow so that's no major issue. He is getting a lot more care and attention now he is the correct place which is great. His right hand chest drain is still bubbling away a lot which shows there is clearly an ongoing leak, we know these can take weeks to heal, hopefully it will slow down soon.

Having two chest drains in really limits his mobility and he is pretty much confined to his bed which I think he found difficult at points watching the other children playing and racing up and down the corridor on ride-on cars. As much as I like the peace of mind I get knowing he has a working drain in each side, I wish he could get up and play and try to live as normal a life as possible... hopefully the pneumothorax will go soon and occur less frequently eventually...

Sleep Deprived!!

So after my last post yesterday things just got worse..

Dylan slowly deteriorated as the night went on.. his breathing got worse, he got very distressed and his CO2 level crept up. We all assumed from the right hand side leak! But nope! An xray at 1am showed the left side chest drain had actually become dislodged and air had reaccumulated quite a lot.. Now whether this could have been discovered earlier rather than allowing him to struggle and suffer all night is another matter, but they soon wheeled him back around to ICU and by 2am he was having a new chest drain put in on that side..

He came round fairly quickly after the drain.. in fact whilst they were cleaning him up he was babbling away like a drunk which was pretty hilarious! His breathing improved straight away as did his CO2 so no need for ventilation.

They did an xray to check placement after the new drain was fitted and the right hand side then had started to reaccumulate. Luckily it was only doing so slowly as air could still escape and he was breathing fine so they left him overnight and I finally went to bed at 3.45am!!

We got moved back to HDU this morning and then they put a right sided chest drain back in this afternoon, and after a bit of suction it seems to be working well so that's is positive. We've just got to accept that Dylan might need constant chest drains for the next few months but as long as he is happy and stable then it really doesn't matter as they don't seem to phase him now.

Tonight is my night at home, busy baking and prepping for the biggest boy's birthday and party tomorrow! Fingers crossed Daddy has a smoother night than I did yesterday!!

Emotional Rollercoaster..

That's the best way to describe today!!

When I got to the hospital this morning, I could hear Dylan giggling and playing from down the hallway! He was so full of energy and it was lovely to see. The right hand chest drain had been clamped for well over 16 hours with no more air leakage so at 11am they removed it...

Then air started leaking causing the dressing to fill up like a balloon! Dylan got very distressed by it all of course. Eventually the air found it's way out of the dressing and has continually leaked since. At the moment whilst it is leaking and can escape they aren't rushing to put a new drain back in, the problem when it's only a small amount of air is that there isn't a lot of space to put the tube into without catching more cysts.

The left hand side isn't doing anything so they will be clamping that drain at 2am tomorrow all being well and doing an xray at 9am. Fingers crossed the right side won't accumulate / collapse overnight if the air can escape out at the moment. That way at least we will be able to see what is happening in the morning.

I can see myself being on edge all night worrying about that darn right hand side!!

On another note.. I have had contact, through one of the LCH groups, with a lady in the US whose daughter had the exact same rare presentation as Dylan and her outcome was very positive! I have passed her doctor's details on to the team here so hopefully they can discuss Dylan..

Lots of ups and downs, but that is to be expected. The next few months are not going to be smooth sailing at all and we may be in for a LONG stay here but fingers crossed there is a light at the end of the tunnel, no matter how long it is...

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..