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.
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