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.

Beyond Heartbroken..

No parent should ever be in this situation, it's not the natural order of things and it's so cruel and unfair. I would give anything right now to fix this and I would trade my life for his in a heartbeat! I'm beyond heartbroken, I am shattered into a million pieces and I don't know how I am going to do this, I don't want to do this..

Dylan has generally been deteriorating for the last few days. He has had his moments where he has fought back as hard as his little body would let him but ultimately he is losing..

How do we get through this? What about Bryce? How does anybody lose a child?

"A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.."

– Jay Neugeboren – An Orphan’s Tale – 1976

Air Everywhere

Yesterday was absolutely horrific..

Dylan lungs were still leaking air only not in to the chest cavity where it could be drained.. there was so much it was filling up his entire body like a balloon trying to force it's way out any way possible.

He just got worse and worse, his lungs were deteriorating fast and we literally were standing there watching him die!

It got to the point where we couldn't keep his sats above 50% despite trying everything and they were dropping fast. We brought Bryce in to the hospital to say goodbye..

We rang to query Ecmo lung bypass again but Dylan is not a candidate because of his chemotherapy so we were fast running out of options. 

An urgent X-ray was requested, he was turning blue and his heart was giving up.. but before the X-ray arrived one of the consultants decided not to wait any longer and stuck a needle in his chest above his heart with a tiny tube into a cup of water!!.. Air started gushing out FAST!! 

His sats went up to 80% so she quickly sited a proper chest drain despite him already having one in both sides. X-ray arrived so we checked and sure enough air on the other side too, it was finally collecting somewhere we could deal with it!! Another chest drain number was put in lower right hand side..

Fluids and adrenaline were given and slowly slowly everything calmed down, his heart rate, his blood pressure, his 02 sats.. I felt like I could breathe again!

He has remained stable today despite a few hiccups, this means he isn't getting any worse. We are struggling to keep his O2 sats above 92/93 at points still but his lungs are very infected and compromising the little healthy tissue he does have.

I'm not sure entirely what the future holds, he is either going to fight off this infection and improve or he is going to gradually deteriorate, hopefully the first of course! As parents we need to find a way to balance out being positive and staying realistic and I think that is the hardest part of all of this. We feel in complete emotional turmoil and completely helpless, jumping at every change on the monitor, second guessing every thing we see and even looking for problems that aren't always there.

He is our baby though and all of this is so scary, I wouldn't wish it on anybody and I feel for the other parents on ICU and Oncology, and those all over the world having to deal with the awful reality of a child with a life threatening illness. My heart and my hope goes out to every single one.. <3

Rough Night

Dylan hasn't had a very good night last night...

Yesterday was fairly uneventful except for trying to source another suction controlled chest drain which ended up coming over from Leceister!

Otherwise things had gone smoothly all day, we had gradually weaned his ventilation down and were talking about him possibly coming off it today which was amazing!!

Dylan had other ideas. He had an episode overnight where he was literally fighting with the ventilator and not allowing it do it's job. His breathing was laboured, his heart rate went up, he developed a fever and generally took a bit of a downward plunge. The ventilator rates had to be turned right up as did his sedation so now he is not breathing for himself again this morning..

This infection has just taken over and knocked him back so much! He has very little fight in him either as he is still neutropenic. This means he has no white blood cells to fight off the infection. He is on so many antibiotics, but of course if it's viral they won't do anything at all to help.

It's like being stuck between a rock and a hard place.. the best way for Dylan to fight all this infection and the lung collapses is to be awake, breathe for himself and take deeper breaths, and cough up all this nasty gunk but he is struggling to do so because of the infection so it's a catch 22 situation and I don't think anybody fully knows what to do for the best..

We have officially now been ventilated for longer than last time too which is disheartening. Every day he is ventilated puts him at more risk of more infection.. more risk of cysts bursting and the lungs collapsing.. more risk of struggling to get him off it.. more risk of drug withdrawals when / if he eventually does get off the ventilator.. more risks in general!!

I just feel so helpless, there is literally nothing else we can do to help him it is just up to him to fight it, but what if he can't?