3rd Birthday

Today was Dylan's 3rd birthday.. a day that on many occasions this year I did not think we would be celebrating!

To mark the special occasion and because he has been so brave and strong throughout the toughest of times, we arranged a little surprise for him through a company called Promise Dreams. It was all done a bit last minute due to the nature of how poorly Dylan had been until recently but between the company, our Clic Sargent worker, our Macmillan nurse and the doctors and nurses we managed to pull it off...

Mummy also made him a special cake.. it is tradition in our household that I make the birthday cakes and even though it would have been so much easier (and cheaper) to buy the large R2D2 cake that Asda does, it just didn't feel right to do so, it felt more special making one. This I think stems from my upbringing and the fact my parents would always create mine each year, mum baking and dad decorating. Plus I think homemade cakes taste better to be truthful as I am a bit of a cake snob!!

He had an absolutely amazing day and I am so grateful to everybody involved for making it so special!

Today also marked the last dose of his withdrawal medication weaning plan, it has now been 6 days with no chest drains AND.. he took his first steps today!!!!!!! 

The best day EVER <3

Sleepover

Yesterday we had a very busy day consisting of lots of playing and painting. Dylan's oxygen also got reduced to 1ltr after physio so that was a fab step forwards. We were still maintaining good sats and still no chest drains yet, despite Mummy and Daddy being constantly on edge!

Last night Bryce stayed at the hospital with us and we had a little sleepover in our cozy private room! Dominoes pizza may have been consumed and Dylan may have been a little silly overnight and cheeky but it was all good fun..

This was done as a test run to see how well both boys behaved ready for Monday night.. Bryce wants to stay the night before Dylan's birthday so he is here when he wakes up which is super cute!

This morning Mummy had the idea of getting the ride along car that the ward has, to see if Dylan could use his feet and his legs to push himself. He hasn't been strong enough to really stand properly yet but we knew his sitting up was good so I thought this would be a good way to get his leg muscles working a bit..

He did really well.. I kept having to 'pretend' to push it for him but he managed to go across the room on it before getting a bit tired out. He had been up at 5am though playing so he needed a well deserved nap!!

As I type this he still has no chest drains in yet, that is a whopping 77 hours so far with none which is an amazing victory, and it's also our longest time on the ward without a trip to ICU since February 10th! He is also now on under 0.5ltr of oxygen and saturating nicely maintaining approx 98 at rest.

Mummy is busy at home tonight starting the epic process of baking his birthday cake and wrapping the last of his presents ready for Tuesday <3

Cheeky Monkey!..

So yesterday Dylan had his last remaining chest drain removed from the right hand side at 4pm. The left one had previously been removed on the 6th so it had been out for two whole weeks already, but his right hand side is his most problematic so I was very wary!!

The nurses were also very on edge, so after a few lovely settled nights with minimal disturbances, Dylan was put back on proper hourly observations. Well this was not fun at all I can tell you! A certain little person woke up every single hour (a nurse standing over you with a torch counting your breathing will do that I guess) then proceeded to mess around each time and barely get back to sleep before the next set of observations were due! At 2am the little monkey was even demanding I get into his bed with him but then straight told me to "get out" within 10 minutes. He kept asking for his DVD player on and to play games.. mummy was not amused at all.

Still.. I'd rather 2am silliness and giggles with sats of 100% than being back in PICU having a new chest drain in the early hours of the morning so it was a sleepless night for all the right reasons.

His withdrawals have become slightly more apparent.. He has finished his Oramorph and Diazepam now and is in the process of having the Clonidine weaned off, he was on 8mg last week and is now down to 3.5mg with it due to finish completely on the 26th. He has handled it fairly well but has been more shaky and had a slightly raised heart rate at points. I don't also imagine it helped his sleep pattern much either but it needs to be weaned down and stopped eventually.

Aside from that he has been fab! He has regained all the weight (and more) that he lost whilst intubated. His upper body strength is getting there now with him managing to feed himself and play on his games. He is really struggling with standing and is very fearful and shaky so that may take a lot of time to work on but I have nothing but time for that beautiful boy!!

Hoping for a smooth and stable weekend so we can focus on his birthday preparations..

Baby Steps Forward..

We have had a fairly stable week and I'm so relieved as I was so worried to be truthful about moving back to Oncology so soon..

Dylan got moved into a side room in the end to protect him from infection, we've managed not to need anymore chest drains so still only have the upper right hand side one in, he hasn't really had anymore coughing fits and his medication wean is going quite smoothly with only minor withdrawals at certain points of the day so lots of small steps in the right direction..

We have had a few issues with him opening his bowels, they've become a bit bloated and sluggish with all the medications but hopefully we are keeping mostly on top of it now and he is even using his potty at points with lots of help from Mummy and Daddy..

Physiotherapy is going well, he is still weak and shaky but is managing to sit up quite well now and hold his own head up, plus he has been using his arms and hands to eat at points and play which is good progress from the start of the week. We haven't really worked much on his legs yet but every day there seems to be progress being made and he gets that little bit stronger so hopefully we can start looking at walking or at least standing in the next week..

Speech wise he is pretty much back to normal.. demanding and cheeky! He gets a bit breathless at points but mostly when doing other things at the same time such as playing or eating (which he has done lots of since stopping the ng feeds)!!

The only other real 'news' is that the test results for the BRAF gene mutation came back all clear which was a massive relief to us.. yes if he had tested positive it would have opened up new treatment options to us but it also would have increased the risk of it coming back either in his lungs or elsewhere or even opening him up to other forms of cancer that are connected with that gene mutation. He has also had some CD25 blood samples sent to GOSH which will be taken again tomorrow, the purpose of these is to see how the disease is responding to chemo. I am VERY nervous about these results.. yes his X-rays before his infections were looking clearer but with how bad he got with the infections and during his week off chemo I am worried as to whether it started to come back a bit. I think to analyse the results properly they will need to send them off over the next few months so lots of waiting and anxiety to come!

Either way, whatever the results I am so in awe of Dylan and how amazing he is.. I never in a million years thought he would pull through Easter weekend let alone be doing as well as he is so far and that we would be busy planning his birthday with the hospital staff.. every minute of every hour is an absolute blessing and I am so grateful for him, he is my miracle!

Things I've Learnt From Having A Sick Child..

The Having a child that is chronically ill changes you.. whether you intend it to or not! Here are some things I've learnt so far from being the mother of a sick child..

1. Be Thankful.. for every single second, every breath, every hug, every kiss, every tear and every smile! Nobody can know what is around the corner so live life to the full and enjoy every second, the downs as well as the ups! 

2. Complain Less.. no matter how bad life gets, it could always be worse. I definitely learnt to think more before I complained. Despite going through the hardest time of our lives, we met families that had children whom had never been outside the hospital walls their entire lives. Plus there is those that don't make it through, those that loose multiple children etc.

3. Accept Help.. I will admit, I never ask for help and am rubbish at accepting it when I need it. I don't know whether it's pride or just that I feel the need to be superwoman, but you know what, sometimes we all need a little help. It doesn't make us weak or useless, it just shows that we are struggling for the moment..

4. Forgive.. the misplaced comments, wrong spoken words, misunderstandings and minor indiscretions.. life is too short to be upset and baring grudges when you are already in emotional turmoil.

5. Let It Go.. no not the song! You cannot control everything and maintain strong for your children when you have too much going on. So who cares if the house isn't hoovered or the kitchen hasn't been mopped for two days? What matters most is being there for your children, whether that be at a hospital bedside or making sure you can attend school events and keep on top of their homework. As long as they are clean and fed and happy that is all that matters right now..

6. Relax.. sleep when they are asleep, if that means going to bed at 8pm so be it! Getting enough rest to focus on your children, especially if driving long distances to and from school and hospitals, is VERY important. The last thing you need right now is to have an accident or not be alert if your children need you in an emergency.

7. Expect The Unexpected.. just when you think everything is under control life will undoubtedly throw you a curve ball!

8. Capture The Memories.. and include yourself in them! Don't always be hiding behind the camera, make sure you're in front of it with your children too. This is a difficult one for me as I hate being in photographs, but should anything bad happen you WILL find yourself looking back and wishing you had more photographs of you together, as I certainly have at points in this journey.

9. Put The Phone Away.. and spend more time playing and engaging with your children or even just snuggling. Yes there will be times they are sleeping or playing happily on their own and you need ten minutes to yourself to switch off.. just don't make them wait for your attention because your phone call or text is more important, they might stop wanting your attention after a while!

10. Rules Are Made To Be Broken.. and I don't mean all of them but certainly some can be ignored during tough times. So they want to stay up until 9pm, does it matter if they aren't up early or at school the next day? So they want crisps for breakfast, well they didn't eat for 12 hours the day before due to procedures so why not! They want to wear unmatched socks, who cares!! There are more important things in life so pick your battles and save a lot more heartache in an already difficult time..

Noisy Wards & Drug Withdrawals

Yesterday we moved back onto the Oncology ward, but not into a side room like originally planned as Dylan is not neutropenic yet. So instead we moved into the bay directly opposite the nurses station again so they could keep an eye on him better. Now usually I have trouble sleeping because of how noisy it is and how often he has his observations done but last night was a whole new level of annoying...

Dylan didn't go to sleep until nearly 10pm due to the noise and drug withdrawals keeping him awake, he slept fairly well despite noisy new admissions and loud conversations and phone calls from the nurses station but poor mummy did not!

This was until around 2am when they disturbed him to do his blood pressure and by using a torch to check his breathing.. then his withdrawals starting kicking in (he was due Clonidine at 3am). So I ended up sitting up with him until nearly 4am trying to settle him with constant disruptions!

Firstly they were concerned about his breathing and sats until I pointed out it was because he was withdrawing and chewing his dummy in distress and he had Sildenafil at 2am.. I had to explain (again) to the new nurse that had taken over during break time that his heart rate would be continually high and his sats would be much lower rather than trying to creep back up slowly if there was an issue, not to mention his respiratory rate would be much higher than 24. None of this information had been handed over which was a little frustrating having to explain it all myself in the early hours of the morning.

Then she woke him up leaning on the bed trying to reach his fluid drip pump which with his bed being an air mattress made the whole thing move. Then she left the fluid pump beeping away.. Then it occurred to them that his fluids had ran out and they hadn't got anymore for him so I could hear the phone conversation regarding ordering him more which by this point he didn't actually need so I pointed this out and it just seemed like I may as well have been talking to myself as nobody was listening! Not to mention them still discussing upping his ng feeds which PICU handed over not to and again I doubted he would need it increasing in the morning, but I was so exhausted and sick of disruptions I just let them get on with it fully prepared to discuss it all on ward rounds..

On morning ward rounds they did decide to move us into a side room for Dylan's safety.. until he started having a coughing fit after lunch and needed extra oxygen support and a nebuliser so realistically it was deemed safer to keep him in view of the nurses station and nearer any extra equipment for the time being. He started a similar coughing episode this evening also. This could be caused by any number of things so the main thing is to keep an eye on him this next few days.

Other than that he has been doing really really well and now eating and drinking! We are still only at the one chest drain and he has been talking lots today and giggling and generally back to being our Dylan just a little weaker. I have no idea how the next two weeks will pan out with his drug weaning and physiotherapy but he surprises us all every day so he may surprise us even more yet!

Sickness & Blood Transfusion

Dylan got moved off the high flow oxygen yesterday and onto a regular nasal cannula at just 1ltr which was fab progress. He has been more lucid each day and said 'I love you' in response to both me and Daddy yesterday which was amazing to hear. He has been laughing and smiling more. He is still very weak and struggling to move his arms and legs and support his head so we've got a very long road of physiotherapy ahead of us and it might take a long time before he is strong enough to walk again.

We got a phone call at 3.30am this morning because he was distressed, his heart rate and blood pressure were sky high, his sats were low despite his oxygen being turned up to 2ltr and he seemed to be working harder with his breathing. He had also been sick a few hours previous. X-ray were called but everything was fine, we eventually managed to settle him off to sleep but he woke up a few hours later in the same state. We struggled to keep him calm whilst awaiting his next lot of Oramoph and Clonidine and they gave him some anti sickness medication which really helped him. Sickness is a part of the drug withdrawal process though so it was to be expected that as he woke up more he may experience more symptoms.

They took the last remaining chest drain off suction during ward rounds as there had been a concern that the suction was now keeping the leak open and preventing healing. He had a 3/4 hour nap during which his CO2 level crept up as he wasn't breathing as effectively, they did an X-ray just to check and all looked fine and once awake his CO2 level came down so the chain of thought is that he is perhaps too sedated now so when asleep it lowers his respiratory drive. The decision has been taken to start to wean down his medication to combat this so he may experience more withdrawal symptoms unfortunately.

He continued being sick throughout the day so is currently nil by mouth. Tomorrow we will look at feeds again or another alternative if he isn't tolerating them still. He has also had his third blood transfusion today as his levels were low this morning so this might help to give him more energy. Unfortunately with being pregnant I cannot donate but it will be something I look into afterwards and I know Mike already has.

There has even been talk of moving him back to a ward potentially.. if ICU need the beds they are happy he is stable enough to be nursed back on Oncology but he will be put into a side room this time for his own safety which is good news and certainly puts him at much less risk of infections.