Sometimes something happens and it is like a reality kick. Be warned this is a bit more of a heavy post than usual, it's been a rocky road lately.

When we got Rosa's diagnosis all those years ago  felt like the ground fell away. Like my heart was full of cold hard sharp rocks, like the only really real thing was the moment we were in.

Every now and then something happens that changes the landscape and brings all that back.

One of those things happened three weeks ago. Rosa was happy but a bit congested lying on her mat after school, Gareth had been doing some suction to help clear her airways which is an everyday thing. I was out walking Bridie. 

Rosa stopped breathing, suddenly without warning, she went blue and her heart stopped beating. Gareth did everything he should, he called 999, he got her on oxygen and under instruction he administered CPR until the ambulances arrived. And it seemed they all did, two cars, an ambulance and the air ambulance all within minutes. We are beyond grateful.  Then slowly she came back, she took sporadic breaths and her heartbeat returned. As they drove to hospital all blue lights and sirens, she came back, exhausted but alive. We came home the same day, ironically our shortest ever stay.

But it turns out it is pretty huge and shattering for everyone. I've been trying to catch you up for a couple of weeks but to be honest we have been pretty broken. I keep thinking I'm OK, I should be OK by now and then I'm really not. It is such a lot to process and accept again. Rosa's condition is progressive, it is progressing, I want to pretend it's not, but sometimes I can't. 

We were in complete shock for a couple of days, not thinking straight at all and not able to get hold of anyone to support us. It was a very strange limbo, in retrospect I think we were shattered and coming down off the massive adrenalin ride.

In the centre of it Rosa is a sunbeam, she is still lighting us all up with her smile. Her gentle and pure joy in the simplest things reminds us what it is all about. She doesn't seem to have been particularly disturbed by her experience and apart from dealing with seizures in the aftermath which were more frequent again she is doing amazingly. 

Fortunately Ithan wasn't at home at the time either and is a very good thing. He is so used to taking Rosa based things in his stride, I think as a unit we switch into a different mode. Ithan's part in that seems to be that he becomes completely accomodating and sweet, he knows that we don't forget him, he gets spoilt in a crisis in fact but he doesn't question anything and he gets his socks and shoes on when you ask him, which is huge!

 

We on the otherhand are slightly in freefall. It is like this thing happened and the ripples from it just keep going and getting bigger. We have spent a very good portion of the last two weeks on the phone to so many people, lots of them several times, in the first instance trying to get hold of people was challenging, as usual the person who is meant to be the lynchpin to tie everything together, the community pediatrician is off sick. In our experience over the last 4 years she has never been there for us when we have needed her. We have sacked her once but somehow covid put us back on her list. We are in the process of trying to get another pediatrician but they are as elusive as cats it seems. In the end we set off such a chain reaction with all of our phone calls and messages left we spent the next 2 weeks answering the phone. Here is a snapshot.... three Drs. secretaries, the epilepsy consultant, the GP, the respiratory consultant, the community pediatrician, the childrens hospice, the social worker, the epilepsy nurse, the community nurse, community team switchboard, Rosa's teacher, The transport people at school, the taxi company, Rosa's PA's, the occupational therapist, the wheelchair service, a psychologist, the dietician...I'm sure there are more, not to mention appointments, in real life, on the phone, on teams, on zoom...and telling the story to friends and family. It's been pretty full on. We are grateful but sad and exhausted.

 There are some really outstanding people in that list, people who really did go above and beyond to support us all and try to connect us to the right specialists. Action hero's and superstars! A few good people have really made a difference and are still making a difference, helping us through this time.

So in response to all these layers of advisors and experts we are making some changes. They think the event happened either because there was a plug of mucus/saliva that had blocked her airway or because something closed off in a panic response to the secretions and suction. In hospital they x-rayed her chest and that was clear so it isn't due to any infection, which is a good thing...although without a definate cause we do fear that it could happen again at any time. She is now never far away from her oxygen, the SATS monitor and suction, although we have both felt super cautious about doing suction since then. It does help but she really hates it and it may have been instrumental in causing this whole thing...or it may not. We've been using the nebuliser and chest physio (which she likes) much more. Her epilepsy meds have gone up as her seizures have been building again over the last month, hopefully the increase is gentle enough to calm the brain electricity without flattening any vital Rosa. We are reviewing pain relief, dystonia meds. and the hyaceine which is a patch she wears to helps reduce the saliva. Initially on advice from the registrar in the hospital and the epilepsy consultant we put this up from changing every 3 days to every 2. Soon afterwards her seizures seemed to greatly increase and her secretions were thick and hard for her to shift so we went back to the 3 day interval.

 We do have our consultation about Botox, on Sunday, in Cambourne...yes really!

Hopefully we will be more informed as to whether it will help Rosa enough to justify the regular general aneasthetic that is required to administer it. 

One of the Drs. I spoke to this week talked about acceptable compromise. This was on one of my angry days, surprisingly, feeling angry has been one of the things that has come out in me in the immediate aftermath, very out of character for me but last week it made a change from crying. Anyway, acceptable compromise, He was talking in this instance about being painfree versus being sleepy. It was one of those falling apart moments again. Rosa's life is so full of 'compromise' and none of it is acceptable, it is outrageous but what can we do but accept it? I was so angry in that moment that for her and us there is no the alternative, we have very few choices, all we can do is try to make the best ones out of a shit selection. Having seizures under control versus being jumpy, nauseous and sleepy, Accomodating her severe scoliosis and managing her pain and digestive issues versus risking her life with surgery that can't give her any more mobility, watching as it continues to get worse. Peg feeding versus dehydration and starvation. Pump feeding versus vomiting. Suction versus aspiration. Quarterly general aneasthetic versus aspirating on saliva. What choices are these? They are not choices at all really but we must, hence acceptable compromise. 

 Today I spoke to the psychologist from Little Harbour, she was calm and gentle and kind. It really helped that she comes from a place where she already had some knowledge of us and Rosa's condition so I didn't quite feel that I had to start our story from scratch. I cried quite a lot but afterwards I felt more peace than I have since it happened. Gareth and I both have a few appointments with her over the coming weeks. I hope that it helps us to see our path more clearly again. We also have a stay at Little Harbour booked for the 2nd week in the holidays. It will be so welcome, I am hoping that the sibs team may sound Ithan out to see  if there is anything he wants to talk about with an outside person. He is so sensitive to all of us in these situations I hope that he will feel able when he is ready to ask us the big questions but if he doesn't I want him to know there are other people he can talk to.

In other news we have her new chair, it is better but she still needs to get out and change position often. We have her new headrest (it arrived yesterday!) It holds her head in a much more upright position, I hope it will mean she can be more engaged with her surroundings and also maybe swallow a bit less dribble. The seizures seem to be back under control now the meds. are settling in. (Briviact)

She still squeals with joy in the evenings when we are all tumbling around together before bed. 

The hot tub is a great hit, it gets better and better for Rosa the more times we do it.

 

 

 We have a new member of the family! Mowgli is Ithan's birthday kitten who arrived the day after all this happened. He is a beautiful, hilarious, purry, furry cuddle of distraction! 

I had arranged to pick him up before all this happened  and although it felt a bit surreal and bonkers to be doing it he actually came at the perfect time for all of us.

He is quite the lap cat... 

 

 

 

 

 

 

 

 

 

 

 

 

I'm so pleased, especially as Rosa's lap is always an invitingly still option, and up high so he can peer at Bridie from above.

So that's about it for now. 

Writing this for me is valuable and cathartic. It really helps to get it all out of my head. It is also really helps us both that you all have an idea of what's going on for us so we don't have to go through it every time we have a conversation. We do want to move on, of course but there is a lot of processing still going on and the sadness is still very close to the surface. Thanks for being there and sharing in our story, we really appreciate the love and support that comes back when I put something out there. It means a great deal to us both.  x