Mummy Breakdown..

This last few days have been TOUGH..

Dylan has developed a bit of a cold and has been tired and run down at points which has made him super stroppy and grumpy. He has a tendency to hold his breath when he has a tantrum and these are becoming daily events, sometimes two or three times a day. I know lots of children go through this phase but it is particularly scary when Dylan does it as it makes me have flashbacks of the 10th of February and the 18th of March. Plus we know he has a reduced lung capacity so potentially cannot recuperate as quickly from these episodes. They really frighten and upset me every time he does it to the point the other night where I had a complete emotional breakdown afterwards.

His behaviour has been appalling over the weekend to be truthful and it's exhausting. Whether that be down to the steroids, him feeling tired and run down or him generally just pushing his boundaries with being allowed to get away with so much in hospital I don't know but it is gradually wearing me down now. He has been so so poorly and we nearly lost him so many times that it breaks my heart keep having to get cross with him and tell him off but it really is getting out of hand now. Then when he is in bed at night I feel like the worst mother in the world and worry if anything happens to him when all I've done is shout all day that I would never forgive myself..

The nights that Mike is working I've barely slept until he gets in at 4am.. I can't relax I just keep worrying about the 'what ifs' and 'how would I cope on my own' and I have actually gone to bed in my clothes just incase of such issues.

I have also cried, a lot... it's finally all just hit me after being strong for so long since he recovered from Easter and having put it all behind me the last few weeks, it's now all come flooding back and my anxiety is horrendous now Mike is back at work. I'm constantly checking him over and second guessing myself when I was so much more relaxed last week. I feel so stressed and upset all the time, and a little bit like I'm just constantly waiting for something bad to happen..

My blood pressure is sky high on and off, whether that is stress or pre-eclampsia again I don't know but luckily I'm on the home stretch now. I've finally started attempting to get some thing ready for Logan's arrival and am trying to actually use his name more instead of just saying 'baby' to see if that helps it sink in.. it just doesn't feel real that we are about to have another baby! This pregnancy had pretty much been ignored whilst dealing with Dylan and whilst it was very much planned and wanted from the start, I can't pretend that had we known how poorly Dylan was we would still be doing this and it certainly puts a dampener on feelings of joy.

I went for a clinic appointment today to supposedly get my c-section date.. I had both my midwife and our Macmillan nurse phone ahead on my behalf and explain the situation yet I get there and the consultant knew nothing about it. They are fully booked the week I need booking in for so I have no date still I have got to await a phone call which means I cannot organise any care for Dylan! They also won't give me a set time despite being told to do so, that means realistically I will be there on my own for the whole thing whilst Mike sits with Dylan at home until I am moved onto the ward. The thought of having a c-section on my own completely terrifies me. Then to add to it all the consultant asked me (because of this being our third child) if I would like sterilising at the same time!! Now.. previous to all this with Dylan I would have said yes probably but given the circumstances and how we have nearly lost Dylan repeatedly I do not feel this was an appropriate question and I left in tears.

I feel constantly like I'm waiting.. for something to go wrong, for another lung collapse, for him to get sick, for something to be wrong with this pregnancy, for my c-section which truthfully terrifies me.. All the things going through my head right now are making it hard to relax and focus on the good times and the happiness of having Dylan home. Every day really is a blessing and I feel that's all being overshadowed by this overwhelming anxiety and stress and I wish I could switch it off..

Milestones

We have had a lovely week being back at home with Dylan so far. We went to a wedding at the weekend which was a nice break and the boys didn't stop dancing together which was adorable!! There was a photo booth too which was lots of fun!

Yesterday he went to the QMC for two types of chemotherapy and he is having three more days worth of one of the drugs this week given at home before a two week break. This is likely his protocol now until September at least when it will be reviewed. The doctors are happy with how he is doing which is good.

Make A Wish also came out to see Dylan last night and in typical Dylan fashion he was very uncooperative! When asked what he would like his response was.. "I'm busy" and when they asked about one of his drawings (of a computer tablet) in his booklet he said it was a "rectangle" in such a manner! Obviously he was right as it was the shape of a rectangle but they wanted to know what it was supposed to be, not what shape!! They left a bit clueless as to what he really wanted for his wish so we wrote down a few different options based on his likes and dislikes, and have to now wait for a decision back.

Today we attended our second week back at Little Nippers playgroup which Dylan really enjoyed. It isn't on next week because of half term but we hope he can continue attending afterwards until they break up for the summer and he starts nursery in September.

As of 4pm today we have now reached five whole weeks with no chest drains which is fantastic progress, and this is now officially his longest stay at home without readmission since Christmas Day!

Every day we are starting to relax a bit more but still find ourselves checking him over when he gets a bit breathless from playing or gets upset in case it's a sign of a lung collapse. We are also checking his temperature regularly to make sure he doesn't get any infections. Each day is a challenge in it's own way, particularly emotionally as we try to regain "normality" without forgetting how serious his illness is and how little could tip him back over the edge again. We cling to the hope that he is getting stronger by the day but until he eventually has another CT scan (which bring their own risks so won't be done any time soon) we have no real way of knowing how his lungs are reacting to the chemotherapy..

The boys are loving being back together though and Dylan has come on so well with his walking and strength since being back at home. He still has his odds wobbles and gets upset and asks to go back to the hospital but hopefully that will pass. He is still holding his breath when he has a tantrum too but his lung capacity does seem to have increased now so he copes with this a lot better than previously. His wheelchair is finally getting delivered tomorrow which ironically he barely needs now but it will come in handy for long trips out and rushed school runs in the morning.

He had his hair cut this afternoon with Bryce and Daddy.. it was time to try and blend in where it is thinning out in places and fix the hack job Mummy did of the back and fringe in the hospital. He looks very grown up and it hides the slightly thinner patches very well. Hopefully now his chemotherapy has changed onto 'maintenance' rather than intensive that will be it for the hair loss, but in the grand scheme of things it really doesn't matter about a bit of hair!

I love having him at home, I'm just a nervous wreck!!

A Message To The Lady In The Lift...

A lady in the lift at M&S today with her husband was smiling and talking to Dylan as we rode up and down stopping at each floor because it was busy.. then just as we reached our floor she asked us about Dylan's oxygen and it caught me totally off guard!..

I apologise if I shocked you when I said "lung cancer" it was just the simplest way to describe it. I realise that sounded scary and you were visibly surprised at his age that he had something so rare. 

I didn't mind you asking, in fact after all the people staring at us as we had walked around the homeware section, it was actually refreshing to have somebody ask with genuine concern rather than just being nosy and rude.

You asked if he would be okay with such concern it broke my heart a little and all I could muster up was that "we hope so now yes" but I walked away feeling like I could have said so much more..

Truthfully I wish more people were like you, that they'd look at Dylan and see past the oxygen tubing and talk to him and make him smile.. that they'd ask questions rather than stare and speculate and that they would show genuine concern rather than just wondering 'how' or 'why' he had this disease, because truthfully we have no idea why ourselves!

Thank you for being the only person in that store today that actually looked at our son like the beautiful boy he is and not just defined by his oxygen and his disease, you restored my faith in the world a little today just when it was wavering and I needed that..

Discharge Planning Meeting

We have kept fairly quiet as to what has been happened the last week and a half because we knew that there could be set backs and changes made..

The different departments have been contemplating discharging Dylan for a while now we have had a relatively stable period. They think it would be better for his rehabilitation and recovery to be at home and just returning for his chemotherapy treatments or if there is more lung issues.

This made us very nervous at first as the last thing I want is a repeat of the 10th of February but then we also want Dylan home.. I am sick of living at the QMC and my children being apart.

We had a discharge planning meeting for Dylan on Friday, this included all the departments here at the hospital as well as the different community care teams that will take over Dylan's care whilst he is at home. He will have to go back to the QMC for his chemo weekly and if his blood counts fall too low or he gets an infection but otherwise he is now safe to come home..

So the plan was Saturday and Sunday to take him out first thing in the morning and not go back until bedtime, then today to take him home!! All we've got to do is phone them Tuesday morning to let them know he is fine and it went smoothly then we are just back as an outpatient!

I'm not naive enough to think that this is the end of it.. there may still be more chest drains needed but hopefully we are through the worst of it and are kicking this disease in the a**! 

We are still waiting on a confirmed long term chemo plan but we should get that at clinic on Friday fingers crossed..

I am SO proud of my gorgeous boy!

Three Weeks / Three Months

Today marked three whole weeks without a chest drain so far! Still counting..

Yesterday was exactly three months since his respiratory arrest at Little Nippers playgroup. We took him home for a few hours yesterday afternoon, this is the first time that he has been at home since that morning and it made us very emotional. Not only that but he took his first proper unaided steps across the lounge then continued to do so the rest of the afternoon and again this morning at Physio.

It's crazy to think that he is even allowed out of the hospital let alone on visits home after Easter weekend. We genuinely did not think we would be leaving the QMC hospital with him at all. We were put in touch with another family a few weeks back whose one year old little boy also had just been given the same diagnosis as Dylan with similar lungs (not quite as severe though) which is almost unheard of so they were keen to discuss it with us. Unfortunately this little boy did not make it, he contracted a similar bout of infections and passed away on Friday after going into cardiac arrest a few times so we are aware of just how lucky we really are..

We know Dylan's condition is very serious and unfortunately not every child with his diagnosis will make it. The cases we know of are few and far between and it seems to be very hit and miss as to who can fight not only this awful disease but the infections contracted from the weakened immune system that Chemotherapy causes.

There is a meeting taking place this Friday about Dylan's future care plan.. this meeting will include all the departments from the hospital that are caring for Dylan, the community teams and even somebody from Shelton Infant School will be attending to make sure they can cater for him come September which I think is just amazing that they are willing to do that for him. I spoke to the receptionist yesterday when I collected Bryce and they are very keen to have him attend and will do their utmost to meet his needs so that made me a bit tearful truthfully.

Small steps forward, fingers crossed!

Oxygen & The Park

Yesterday we got the news that Dylan's home oxygen was being delivered Saturday between 9am and 1pm so we started informing the relevant people ie. home insurance, car insurance and the fire department. It was all very scary and exciting at the same time!

We had what is now known as 'Basic Life Support' training (CPR) and were provided with a face mask to use in case Dylan needed rescue breaths. We were taught a little more in depth than just the basics due to Dylan's condition so hopefully what we now know could technically keep him alive until an ambulance arrived in the case of respiratory or cardiac arrest. Both of us had basic CPR training from previous work places and we knew the most part but some things had definitely changed including the chest compression part. I like to hope I could do this in an emergency and not panic but it is definitely a scary concept.

They officially stopped his Sildenafil medication as his Echo showed no pulmonary pressure so he no longer needs it which is good news, we noticed his heart rate was a lot lower once it was out of his system which was good.

He had a good physio session in the morning on the soft play equipment again and we went to feed the ducks in the afternoon just outside which was nice as I was gutted I missed out on that the day before!

Our home oxygen supply was delivered today by lunchtime. This consists of 4 large cylinders that last 80hrs each, 4 small portable cylinders that last 16hrs each and a rucksack. We have lots of tubing and information regarding safe use and reordering so it is all very overwhelming!

So.. once we had the all clear we went out this afternoon for a trial run to Wollaton Park just for 2 hours. This was the first time Dylan had been off the hospital grounds in nearly 3 months and it was a bit overwhelming and exciting for him and us too!

It was fun but tough! Dylan was desperate to play on the park but struggled to do much so it required a lot of help and patience plus carrying around a 3kg oxygen cylinder with only 2m of tubing was a challenge to get use to..

He soon got tired and fed up so we got him the Ice Cream we had promised him and had some relaxing time on the grass before jumping back into the buggy for a walk around the grounds.

It was exhausting for me never mind poor Dylan but we must keep going and push to do 'normal' things to help him recover. I did find people were staring a bit at points which made me feel uneasy. I imagine we did look a sight today though struggling and trying to work out the logistics whilst I was waddling along looking like a whale!! Plus the buggy is only small so is not easy to push with Dylan and the oxygen now he is getting bigger. I cannot wait for his wheelchair to be ready and to get the seat attachment for the pram.

He enjoyed getting out for a short bit though and fell asleep in the car on the way back to the hospital bless him! As soon as we got back he did ask to go again tomorrow so that's a good sign I suppose!!

Physiotherapy & Ducks

Yesterday we went down to the gym with physio for the first time and Dylan got to play with the soft play. He really enjoyed this and did really really well. He did get a bit out of breath towards the end but he did lots of walking, climbing and crawling with support..

We started the ball rolling for home oxygen, Dylan cannot leave the hospital grounds without his own oxygen supply. This is for his safety but also his rehabilitation process so he can continue to build up his muscles and strength without getting out of breath. We also have requested a wheelchair for him from Derbyshire Wheelchair Services so we are waiting to hear back from them.

In the afternoon a magician came to see Dylan which he really enjoyed!..

We had lots of fun before bedtime playing 'magic wand' and he had an Echo done of his heart which he did not like much, so he was very tired out in preparation for his sleep study..

This morning we went back to the gym with physio and did a good 45 minute session and he coped very well with this. He also did some crafts this once we returned from the gym and got glitter everywhere!! Unfortunately we didn't hear anything about either his own oxygen supply or the wheelchair but after some discussion it was decided Dylan was allowed to the duck 'pond' in the hospital grounds with a nurse escort. He used the ward's oxygen and wheelchair for this excursion. Unfortunately poor Mummy missed the fun as it was my night to pick Bryce up from school..

As of 4pm yesterday we officially reached 2 weeks with no chest drains, this is infact the longest period that Dylan hasn't had a single drain in since he first became poorly at Christmas.. hopefully this is because the disease is slowing down but we are still awaiting the CD25 results which I pray bring good news.

Not everybody gets good news on an Oncology ward though and my heart goes out to those parents the most of all today <3

Sleep Apnea & Nebulisers

Last night Dylan stopped breathing briefly in his sleep, this was the third night he had done this likely due to his virus causing restriction to his airways. His sats dropped and we had to turn his oxygen up but even then he was still struggling. The doctor came to examine him and he woke up and had a huge coughing fit which required a nebuliser. He then had ANOTHER chest X-ray for the third night in a row which showed infection on his chest but no pnemothorax which was good news at least. After the nebuliser he managed to settle back off to sleep on 0.5ltr of oxygen to help keep his airways open. Although he was so funny and silly after the nebuliser so settling him back off to sleep did take some time!!

Respiratory have today decided to keep him on 0.5ltr of oxygen.. despite him being sat close to 100% saturation on it and clearly not needing it whilst at rest it is more to help him during his recovery process and physiotherapy rehabilitation which may take months. He has lost a lot of strength and has been on a lot of medication so his reserves are already low let alone when we are pushing him to walk, crawl and play, so this should help him get less tired and breathless. It's not a permanent thing (we hope) and it isn't a massive amount of oxygen for his weight either but it should aid his recovery and is then there in case of emergency or issue such as last night.

We have been referred to Derby wheelchair services to get an actual wheelchair for Dylan now as opposed to a special buggy which will make the transport of oxygen easier when out and about. It should also encourage him to only use it when needed and not rely on it the same way he would a buggy. We are also looking into a seat to clip onto the pram we've brought for when Logan is born, but I do have a baby sling for the school run etc.

I am happy that Dylan will be coming home on oxygen when he is well enough to do so, this puts my mind at ease a lot as I genuinely think the use of oxygen on Feb 10th would have saved him getting in such a bad way. It cannot fix a serious pnemothorax but it can help a small one and buy time to get to a hospital safely without the need for ventilation.

I am weary though of how difficult that coupled with Dylan's low mobility will impact daily life once Mike returns to work.. simple tasks that I took for granted before will become much more difficult and everything will require a lot more planning and careful consideration but I'm positive we can get through it. Compared to the thought of him never coming home over Easter, even the idea of it is amazing!

It's my night at home tonight after three nights of staying at the hospital I am exhausted. I pray for a smooth night and that he doesn't have anymore sleep apnea episodes and worry Daddy too much! He has already had a nebuliser before bedtime so hopefully that will help him breath overnight and get a good night..

Full Of Cold :(

Today marked three whole weeks on the Oncology ward without any transfers back to PICU hooray! I am not enjoying the early morning wake ups, (4.30-5.30am) they come from the huge windows and rubbish curtains here in the side room, but I would much rather be in here than anywhere else after our Easter weekend scare...

On that note though.. Dylan has woken up full of cold this morning! No idea where he has caught it from but I guess it is just one of those things. He had throat swabs taken this morning so will wait for the results and keep an eye on him. Obviously after last time we aren't taking any chances so tonight both Mummy and Daddy are both staying and we have him back on regular observations, including us checking him more frequently than usual!!

He hasn't been needing oxygen in the day time since Wednesday but had needed it overnight the past few nights on just a tiny 0.1-0.2ltr due to him having mild sleep apnea (probably from this cold developing and restricting his airways). This tiny amount was enough to keep his airways open and for him to maintain 97-100% oxygen sats, tonight he is sat a little lower at more like 95-96% due to him being full of cold and his airways being more restricted, even his little nose is blocked up which is obviously where the oxygen is delivering.

Dylan did have a chest X-ray last night at around 9pm due to him appearing breathless at points and his sats occasionally dropping below 92 yesterday. Various doctors had listened to him but it was done to air on the side of caution and check exactly where he was at. It was all fine so that may have been the start of the cold that he has woken up with today or that Prof. Walker abruptly stopped his Sildenafil yesterday as opposed to weaning it off slowly so he may need time to recuperate from that too.

His sats today have been lower than they have been previously without the oxygen and his heart rate is a lot higher but that is probably down to this cold again and how hard his body is working to fight it. He isn't neutropenic yet, but we know after last week's chemo it may happen soon, luckily this is his week off now. He doesn't have a temperature though which is good, if anything he is probably slightly on the chilly side at points.

I guess my biggest fears right now are a relapse and him ending up back on the ventilator.. if he gets a fever he could have another seizure, if his airways close up he could require intubating, if this moves on his chest it could end up an infection and pneumonia again. All these worries are likely to keep me awake the next few nights and on edge the next few days. I suppose this will be what I will feel like every time he gets sick though, he is just so fragile and the absolute worst thing for him is a respiratory infection or virus as we've already witnessed once.

If I could wrap him in a bubble I would!

We've been given a slight timescale of how long his chemo regime MIGHT be.. he may not stay on this harsh protocol for a lot longer, depending on the CD25 results and if things are now slowing down. The original plan was June at least I believe so will probably see what happens after that but he may then go on to maintenance chemo. This maintenance chemo, when he does go onto it, will probably continue until he is 5 years old at least as that seems to be the age the disease usually burns out by and will decrease his risk of it reactivating again. That obviously means the next 2 years at least will be spent fighting this disease but hopefully he will be able to start nursery and school even if only part time.

He is doing loads better with his walking now, he is very very wobbly and can only do a bit at a time but finally has the confidence to try a bit more now which is good. He will probably need a wheelchair or a special buggy for some time though.

His DLA has been awarded which is great news and means I can apply for carers allowance and he will be entitled to a blue badge which will help us out no end if he isn't as mobile now as he use to be, especially with me now at 32weeks pregnant!

We have also received paperwork from Make A Wish which is very exciting!! They are just doing all their admin and checking out his medical records so hopefully he will be granted a wish through them to use when he is discharged and a little more stable.. I already know what he wants ;)