Sleep Study 2.0 & Nursery Visit

Whilst I was in hospital after having Logan, the Respiratory and KITE Team arranged for Dylan to do a sleep study without his oxygen.. unfortunately this didn't go very well!

For a number of reasons Dylan's heart rate was very high. His oxygen levels were fine but there was concern he was having to work too hard to maintain them, hence the high heart rate. However, he was upset at night most of that week even with the oxygen and seemed to be reacting badly to his chemotherapy. The night they did his sleep study was the worst of the week and he was awake upset for hours so they didn't get an accurate result to use really.

So we repeated the sleep study again last Wednesday night.. we only just officially got the information today! Dylan's oxygen saturation over night was perfect, the only slight concern is that his reserves are still a little low, particularly on chemo week. So the decision has been reached to leave him on 0.5ltr for another 8 weeks and review before he starts nursery BUT only when he needs it now and overnight! This is a major step for us and means that unless doing anything strenuous or if he gets tired or unwell, he can have a tube free face and we don't have to follow him around as much!

Dylan also went to visit his nursery last Thursday for a stay and play session. He is due to start in September and we are awaiting funding for an extra staff member to help and support his additional needs such as oxygen (if he needs it then for any reason) and in case of emergency. Daddy took him to visit as I am still not 100% post csection should he have wanted lifting or picking up at any point. He absolutely loved it and didn't want to come home! He didn't really interact with the other children though which we have noticed he doesn't do since all of this has happened so hopefully nursery will do him some good.

I imagine I am going to be an emotional wreck in September.. even him going for an hour on Thursday got me a little bit emotional as of course just three months ago we never even dreamed we would get to experience all of this with him! Every milestone is filled with such joy but also sometimes sadness as we can't help but replay the events of Easter weekend over in our minds and feel that pain again, still raw and still very real.

Myself and Mike are clearly suffering from a degree of PTSD from the whole experience. Little things set us off like watching him interact with his brother or dancing and singing to his favourite songs.. we can't help but think about life without this little superhero and how close we nearly came to it. How long is this going to last? These flashbacks of that weekend, the imagining of how things may have turned out.. Months? Years? Or will it always affect us in some way. I guess that is the unknown factor and only we can face this and work through it together as a family now.

And Baby Makes Three (Boys)..

A few people wondered why we didn't attend playgroup on Wednesday.. don't worry nothing was wrong with Dylan we simply had other plans....

Our third and final boy (Logan Michael Askin) was born on 15th June at 11:43 weighing 7lb8oz making our family complete. I had known my section date since my hospital admission the other week but wanted to keep things quiet for a number of reasons so please forgive us..

1. Everything with Dylan has been so much in the public eye since February in particular because of how rare his disease is and how publicly he collapsed at playgroup so we wanted some private family time.

2. My sister was out of the country on her honeymoon and even though she knew my date I didn't know how quickly she would pick up notifications or picture messages on the day because of the time difference.

3. We wanted the boys to meet their little brother first before photos circulated online, they have both had such a rough time lately being apart and then this whole new person was entering their lives and we hadn't had a great deal of time to prepare them like we did last time around.

4. We didn't know if my preeclampsia would cause issues beforehand and whether I would have to be taken in earlier or whether there would be complications after the birth.

5. Dylan may have had issues prior to the birth such as a collapsed lung or infection etc. then plans would have obviously changed again.

6. I felt uneasy about the csection, I never actually wanted one it was suggested for medical reasons due my placenta abrupting with Dylan but the idea petrified me. I remember the epidural not working with Dylan and being able to feel everything then being given a general anaesthetic not even knowing if my son was alive still or not. The thought of the surgery itself and my PTSD from last time almost put us off having a third child and it took a lot of discussion before we decided to try and conceive again, then of course Dylan's illness threw a spanner in the works and added in more stress and worry than we had ever dreamed of!

7. This was chemo week for Dylan and he hadn't reacted very well to it this time around so we were worried about him and didn't want any extra visitors to overwhelm him or upset him even more than he already was.

We hope you understand our reasons behind the secrecy! Both boys adore their new brother which is so lovely.

Dylan has been a bit unsettled with me being away in the hospital and he hasn't had a good week with regards to his chemo this week either. He is very tired and achy from it and unfortunately it all hindered the results of the sleep study he had done on Wednesday evening so that will be repeated again at some point next week.

I can't imagine my life without these three beautiful boys right now and I pray that is something we never have to face the possibility of again..

"You're Crazy!"

Seriously, if one more person tells me I am crazy/mad/a glutton for punishment/going to struggle etc. I am going to scream!!!!

OBVIOUSLY if we had known about Dylan's condition beforehand we wouldn't have been having another baby.. that's just common sense really! We planned it out so we'd have the same age gap between all three children, we had always wanted three children. We had our 12 week scan THREE DAYS before our first glimpse into Dylan's illness and ever since all I've done is wish we weren't having another baby. There I've said it! Obviously I love him and am excited deep down for his arrival but life is going to be so tough and that worries me every day!

The more people that make comments, the worse I feel.. I already KNOW that I am going to struggle to cope so all these comments just reinforce that and add to my anxiety and my self doubt.

I genuinely don't know how I am going to manage but I don't really have much choice in the matter so please stop making comments without first thinking about the impact it might have on my already waning self confidence and belief. 

And as for strangers that feel the need to comment.. well truthfully you make me not want to leave the house sometimes! I don't know what it is about a certain generation that makes them so judgemental and makes them think they have the right to comment on every body else's lifestyles. I realise things were "different" in your generation and nowadays you are seeing lots of different walks of life but did nobody ever teach you that you shouldn't judge a book by it's cover? Or of course my absolute favourite.. if you can't say anything nice don't say anything at all!

Clinic Appointment

So not much has been happening recently to be honest which is refreshing! We've had no major drama and Dylan has been enjoying being a normal 3 year old, playing with his brother and going to parks and playgroups etc. Yes the oxygen is making everything more challenging and me being the size of a whale is not particularly helping but he has been mostly a very happy little boy.. you wouldn't actually believe how sick he has been to look at him now if you didn't know!

We called the QMC on Wednesday to get some information over Dylan's chemotherapy next week as we hadn't heard anything for a while and wanted to make sure we got an early appointment on the Tuesday and that hopefully somebody from Respiratory would be around to review him and his oxygen requirement. However, upon making this call it landed us a clinic appointment with Prof. Grundy who was now back from his hip operation...

Now, he went off on his 'sick leave' just after Dylan's seizure when as far as he was concerned Dylan was stable enough to be extubated.. but of course he deteriorated and that didn't happen as planned. He was spared a lot of the details whilst he was off but heard it all when he got back and he failed to see what all the fuss was about looking at how well he is doing now! This is what I mean about it being unbelievable, you wouldn't think it is the same child.

The clinic appointment was mostly a waste of time (in a good way) because Dylan is doing so well. Prof. Grundy didn't seem to care about the oxygen and basically told us to take it off if he doesn't need it!! I've said we will discuss it all and get Respiratory to check him Tuesday as I don't want to make any hasty decisions without them assessing him. He has also dropped a few of the medications off that Great Ormond Street suggested in case of transplant and he has stated he would like Dylan to have another CT scan before his reassessment by them in August.

This is a bit scary but we are going to attempt to do it without ventilating Dylan so lots of time will be spent this next two months getting him use to the scanner etc. This will show us how the chemotherapy is working, particularly now we are not on as 'intensive' a regime and hopefully may show that he won't need a transplant and therefore won't need 6 monthly reviews at GOSH.

But what if it shows that things aren't improving? That's something that Mike has been worrying about since Wednesday.. I hadn't thought about it until he said it in all honesty and I'm the irrational one usually that checks Dylan over and over throughout the night!

LOGIC would state that Dylan is improving, he hasn't had a chest drain in now for 7 weeks, previous to this he had not gone longer than two weeks without one since it all started and that was before he got worse and treatment began. He is getting less breathless, has more energy and is eating and drinking better. His sats are improving, his oxygen requirement appears to be going down. He sleeps better and his breathing overall looks better than it has done in the last 5 months total... But unfortunately logic and reasoning don't enter into it when you've been to hell and back as a parent and you can't help but feel it's all 'too good to be true' or that you're waiting for the other shoe to drop...

I pray that never happens, it would be cruel and unfair to get all this hope back, all this improvement and to be back to planning our future just to be hit with more bad news or another deterioration. I guess that's how our life will always be though to a degree, as is the life of any cancer patient and their family.. Even if the disease goes you never know if it'll be lurking around the next corner waiting to strike again!

Hospital Admission

..but this time for me! I rang the pregnancy assesment unit on Thursday morning after having had a severe migraine for 48 hours that paracetamol wasn't resolving. I arrived at 10.30am to find my blood pressure was high (138/91) and there was now +1 of protein in my urine. This all pointed to my preeclampsia being back again as with both Bryce and Dylan..

They kept me in for monitoring and slowly things settled down with rest but they were concerned about the headache coming on so fast and so severe so they wanted me to stay in overnight and have an MRI done the next day. The reasoning behind this being that high blood pressure / preeclampsia can cause blood clots and occasionally bleeding on the brain and with this now being my third pregnancy with these issues and I am now in the 'typical' age bracket for these issues they wanted to double check.

The MRI didn't get done until 4.30pm Friday but it was only a short one, approximately half an hour long. I can't for the life of me understand why they put music through the headphones though because as soon as the machine starts you can't hear any of it! It doesn't surprise me they sedate children for it either, like Dylan, it is all very claustrophobic and a little bit overwhelming even as an adult. It's also very difficult to stay still when you've got a baby doing acrobatics in your tummy!!

I finally got discharged very late yesterday, apparently the MRI was fine which is reassuring. Now I've just got to wait for my csection and continue with extra monitoring but if my blood pressure goes up again or any other issues I'm to go back in straight away of course.

Dylan found it all very overwhelming.. When he came to visit he kept saying that he wanted to go to 'his hospital' obviously meaning the QMC and got upset and fed up very quickly. This meant that Mike couldn't stay very long unfortunately and had to take him home. He was upset whilst at home too, he kept asking for me and getting tearful but thankfully Mike was good at distracting him. It also meant more unplanned time off work for Mike which wasn't ideal now he had used up all his sick pay allowance and wasn't due paternity leave yet obviously. He also felt awful letting work down after only just going back!

I'm glad to be home so much! I know I've got to be in after my csection and I know that preeclampsia is very serious and needs to be monitored closely but it just seems silly keeping me in if they aren't planning on doing anything yet and if I now feel okay. The one good thing about my admittance though was that sitting in the family room eating breakfast I got to see lots of gorgeous newborn babies.. this finally helped me actually FINALLY feel some excitement and joy over our impending new arrival. This next few weeks hopefully will fly by and after Logan is born let's hope we can get back to some normality with limited hospital visits for a while (except for Dylan's chemo of course)...