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.

Smiles & Speech

This morning he smiled for the first time since his seizure, not even a drug induced smile but a proper Dylan cheeky smile at Daddy and he recognised and said 'Bryce' when I was going through photographs on my phone! He also said 'don't know' when he was getting upset and we asked what was wrong. We have also had a lot of 'yes' and 'no' responses to questions and more smiles throughout the day.

He is on a lot of medication to control his drug withdrawals, he is on Diazepam and Oramorph for the opiate withdrawal plus Clonidine and a few others if he needs them. Yesterday he had his left chest drain removed and his catheter and today he had the lower right chest drain removed so we are now down to just the one. He is very weak and has lost a lot of weight so he has very little energy and cannot move much so we will need to work very closely with the physiotherapists. He is still not eating but he is having high calorie liquid feed via his ng tube so hopefully this will help him.

This next week or two will be very slow and tough but hopefully we will start to see him become more like his usual cheeky self as time goes on and the drugs get weaned down, I'm just so glad to actually be at this point after such a dreadful Easter..

Drug Withdrawals

Watching your child go through drug withdrawals is very distressing, even if you were fully expecting it..

Usually if a child has been ventilated for a long time they would be gradually weaned off sedation before extubation for maybe a week or so, but there wasn't time to wait to do that with Dylan, every day he is unnecessarily ventilated is more risky so they just stopped it all in order to wake him up for extubation and then slowly started him back on some to control his symptoms.

Drug withdrawal comes with it's own risks though such as hallucinations, panic attacks which can cause them to stop breathing, high temperatures which can cause seizures, sickness which again can hinder breathing and high blood pressure and heart rate to name a few. What Dylan will be suffering with now is very similar to what drug addicts face when they try to quit opiates. He is also in the age bracket that is notorious for tolerating sedation too well so he has effectively been on almost adult doses of strong drugs for 18 days so it's no surprise he is suffering so badly with it all. Every little noise distresses and confuses him, sometimes he realises we are here, other points he doesn't and he won't settle to sleep so is over stimulated and over tired.

In hindsight maybe they should have moved him into a private cubicle to minimise the noise and disturbances but even that brings it's own risks as they would have to either disconnect the oxygen and / or use the bag whilst transferring him round. Plus the move could disorientated and distress him further so it's a bit of a catch 22 situation as is every thing at the moment.

There is a chance he may need to be re-intubated should he not cope well, I really hope this doesn't happen as of course then we will be back to square one and no doubt end up with two new pnemothorax due to the pressure and it will be a massive set back for him so I am just praying we can get through the next few days safely.

We seem to have gotten it under control slightly more today, the main thing distressing him has been his throat being sore and a few hallucinations at points. If he didn't have so many tubes and wires I would crawl into bed next to him and hold him so tight and comfort him but the most I can do is hold his hand, stroke his hair and talk / sing to him. I just hope he knows how much we love him and how very proud we are of him..

Extubation

This morning at 8.20am Dylan got changed onto CPAP ventilation, this means his background rate was turned off so he could breathe by himself..

Initially his sats and his volumes improved and then he got more wakeful, started coughing and retching and had a little dip in sats. It looked to me like he was working harder too so naturally I was concerned. The lower right and left hand side chest drains hadn't been working since last night so ultimately my big worry was that air was accumulating. His volumes stayed good though and his blood gas result was fantastic so I tried to relax, he was quite clearly starting to suffer drug withdrawals too which did affect his breathing and heart rate last time so there were numerous reasons for the dip in sats and they came back up gradually again.

At 10:45am the ventilator pressures were turned down to the lowest rate and his feeds were stopped in preparation for extubation and an X-ray was ordered to check there was no issues before proceeding, this was done just after 12pm and it was all good so sedation was reduced for extubation at 1.20pm, then came the waiting for it to fully wear off...

He was extubated at 5:30pm and put onto high flow oxygen and after an initial panic attack he settled down. His drug withdrawals are horrendous.. he is confused, distressed and generally not with it at all. It is making him work harder with his breathing, increasing his heart rate and his temperature and is all very upsetting to watch. It also makes it very difficult to see if there is a problem with his lungs as it is masking all his usual symptoms of pnemothorax so we are so on edge as are the doctors!

We have decided not to leave him tonight so we are taking shifts to sleep again, not purely through worry but also not wanting him to wake up confused and scared with neither parent there by his side. He is such an amazing brave boy <3

Easter Week

This last week has been an absolute rollercoaster of emotions for everybody..

Good Friday it was apparent Dylan was slowly deteriorating.. his sats were 70 and lower and we were really struggling to ventilate him even on 100% oxygen. We swapped his ventilation mode to APRV which is less stressful on damaged lungs as it works by keeping the lungs inflated and forcing the exhale instead. He also had another blood transfusion. The aim was to see if we could buy him a bit more time for the antibiotics and steroids to work but it was looking bleak. His heart rate and blood pressure were sky high and the worry was that he would cardiac arrest at any point.

Family were called in and we had him christened and did his hand prints with ours and Bryce's and we spent the night at his bedside.

Saturday morning we were told that the low levels of oxygen were starting to effect his organs and that they were shutting down. He had a stomach bleed and impaired kidney function. The general consensus was that the infections had distroyed the small bit of healthy lung tissue he had left and that there was absolutely no coming back from this. Doctors took us to one side and had 'the talk' with us about stopping treatment and turning the ventilator off..

Bryce came to say goodbye and we know he fully understood what was happening poor thing.. Mike put a status on his Facebook in the hope people would give us the space we needed.. We turned the muscle relaxant off and waited whilst it wore off, during which time it became apparent Dylan's high heart rate and blood pressure was because his sedation wasn't adequate and he was quite distressed!! Blood tests came back and showed that actually his organs weren't failing like they thought and his oxygen sats went up to 75 slowly.

So we decided to wait and leave Dylan's fate in his own hands..

Family were confused, heartbroken and downright emotional wrecks! Myself and Mike spent almost every second by his bedside, forcing ourselves to eat despite feeling sick to our stomach and taking turns to get a few hours sleep. We cried and cried, we read him stories, watched his favourite DVDs on repeat, held his hand, prayed and prayed to whoever was listening and begged our little boy to come back to us.

Easter Sunday his sats got up to 80 and it looked like he was starting to turn a corner. His body was holding on and fighting but would it be enough?

I sat with him a lot of that night.. buried my face in the bed next to him and held his tiny puffy hand begging him to come back to us.. I felt his grip tightened and he squeezed my hand so tight almost as if to say 'hold on Mummy' and it sent me into floods of tears. He was fighting, he was trying to breath and he was so determined not to give up, so neither would we!..

Easter Monday morning came, he had made slight improvements but nothing to suggest that we weren't still running out of time. Father John came around to see him and said a healing prayer for him. I had gone for a nap as I was absolutely exhausted but I spent a lot of the time crying rather than sleeping. I came back to find Dylan was slowly making improvements! We were able to turn his oxygen down to 90% and his sats were staying above 85 which was a big step.

Tuesday when the doctors did ward rounds after the bank holiday weekend they were shocked at his progress. They stated that if Dylan wanted to fight they were going to do everything in their power to fight for him! Mid morning his right sided chest drain got blocked and caused a minor set back for a while and the oxygen had to be turned back up but gradually we got it back down to 86% and overnight we managed to get it all the way down to 75% with him still maintaining sats of 89 so we actually managed to get a bit more sleep each, still taking it in shifts though.

Wednesday we had a new piece of equipment delivered that had only been trialled in adults so far and hadn't had any paediatric sized belts made yet but Dr. Davies had been in touch with the guy who made it and they had been discussing Dylan and how to rig it using ECG dots. The aim of this was that it would give a real time picture of how well his lungs ventilated.. it was fascinating! We switched his ventilation back over to the conventional BiPAP and could instantly see on the PulmoVista that it had improved.. this was a huge step as we had previously tried to switch him back to BiPAP at the weekend but he wasn't ready. It meant we were now able to reduce the pressure on his lungs. He coped really well with the change until he decided to be a bit too awake and bite on the EG tube.. little terror!

He had some physio to try and clear some secretions off his lungs and that then expanded the small air accumulation we knew he had on the top right making it large enough to now drain. His oxygen was turned back up to 100% as he was struggling with the accumulation and all the stress and changes. Another chest drain was put in taking his total to 5 now, 3 on the right and 2 on the left. His chest is starting to look a bit like a pin cushion. His sats didn't pick up the way we had hoped for, in fact with all the messing around they actually went down slightly. The X-ray however was fine but it did show that his EG tube needed pulling back a bit so that was done next.

Then they flipped him on to his front to see if that would help him at all as he had been on his back pretty much constantly for the last week and a half. This didn't particularly help his sats either. The lower right hand side drains were being blocked off by him lying on his front so lots more fiddling and moving him around.. before eventually putting him back on to his back!! All the chest drains got tangled and it was an absolute palava sorting them out because everybody had such a difference of opinion as to how to do it best! He did start to calm down though so we were hopeful for a stable and calm-ish night..

Overall a very stressful day with lots of changes made and lots of ups and downs which I personally found very worrying and nerve wracking. I know changes needed to be made if he was ever going to be taken off the ventilator but it was scary after such a rough weekend to be doing so much today and potentially 'rocking the boat' and risking destabilising him.

Thursday morning we had managed to get his oxygen down to 80% and still on BiPAP lower pressures than the day before which was good. His sats were only reading at 85 ish even after manipulating one of his chest drains that had stopped working. His stomach bleed had appeared to have settled and he was tolerating feeds via his NG tube so that was good news. They also decided he was stable enough to start his second round of chemotherapy so we only delayed it by 3 days after all so that was good.

I was slightly nervous to start the chemotherapy in some ways as we knew that would make him neutropenic again within about a week but the doctors were hopeful he would be more stable by that point as his infection markers in his blood had gradually started to creep back down again.

He had the 2 oldest (non-working) chest drains removed, one from each side which took us back to 3 but the new top right one was STILL not working properly! Eventually after repeatedly trying to resolve it Dylan had an X-ray but there was nothing on it that could be drained. I was still concerned about leaving a drain in that we knew wasn't working on the right hand side, especially with how much it had reaccumulated at points earlier on in the day and his sats weren't very good either. They started him on a new drug called Sildenafil, which is actually the clinical name for Viagra, to help the pulmonary hypertension. His sats got worse and despite the X-ray not showing a great deal of a collapse there was clearly air collecting at the front so they prepped to try and put a drain in that would aim towards the front section more.. typically in true Dylan style his sats shot right up as we were getting ready which did worry me that we might be going in to an area that was now resolved but it could also have been the Viagra kicking in from 2 hours previous as it only provided him a temporary boost. Whilst the doctor sited the new drain the nurse didn't even bother to get the new drain ready for him so Mike ended up having to help and pretty much tell them what to do which was ridiculous really!! Once the new (slightly larger) drain was in the old one was removed, I would be lying if I said I wasn't nervous every time a drain is taken out but they can't stay in forever, especially if they aren't working as they add to the infection risk.

Then there was a concern that the drain was actually IN the lung itself as it was bubbling more than anybody expected and his volumes in and out on the ventilator didn't tally up and it wasn't leaking from the EG tube so ANOTHER X-ray was ordered. Dylan was oblivious to all this and super chilled out from his boost of drugs! Luckily it didn't appear to be in the lung and it had nicely resolved the accumulation. The likely scenario being that whichever cyst burst to cause the leak was one of the ones connected to the airways which just take slightly longer to resolve. His sats were a lot better and we finally dare leave him at 1.30am Friday morning for a few hours sleep!

The next day he started making leaps and bounds!! He kept coughing which was finally shifting some of the gunk off his chest and his sats were slowly rising and we were slowly weaning the oxygen. Dr. Davies decided to put the PulmoVista back on his whilst they fiddled with ventilation. We managed to wean the pressures down slightly more and he had his second dose of Cytarabine chemotherapy so a good day generally all round, we felt brave and left him early in an attempt to catch up on some sleep from the night before.

Today has been fairly steady with some good progress made and more chemotherapy. His sats are finally sitting at 90 and above and he is now only on 45% oxygen. He has had a bit of a temperature today but only a low grade one so hopeful this isn't the start of another infection. There has also been a lot of fluid draining off his lungs too and lots of mucus being coughed up which will all help him. Hopefully he will continue to make progress but every day he is on the ventilator puts him at risk of more issues so let's hope he is ready to come off it soon! They've started to wean his sedation and he has been opening his eyes and yawning at points but he is still very sleepy and confused, it will take a long time to wean him off the high levels he is on otherwise he will suffer drug withdrawals again.

He could have another set back at any point and me and Mike are on tenterhooks waiting for the next bit of bad news constantly when we are so close to being able to be extubated. Every day is an emotional rollercoaster ride and I am just praying I can hold him in my arms soon and see his beautiful smile and eyes properly and I pray we don't go back to where we were last weekend.

Not everybody is so lucky, we know a family lost their precious child here yesterday and it's not the first that I know of in this last two months either and it was very nearly us last weekend. I wish nobody had to experience that heartache, there is nothing worse that losing, or thinking you're going to lose your child.. there are no words and my heart goes out to anybody in that awful situation.