Mummy's night at the Hospital.... and some more thoughts.

Well after mark had the night at hospital last night, its my turn on shift tonight.

I arrived at the hospital for just before 7am this morning. George was settled on mark so I cracked open the laptop and started doing work (I returned to work mid feb) whilst that might seem crazy to some of you after all the trauma, in a world where I have lost control of everything else I hoped work would help me find some normal...at least that's what I'd hope, but sometimes that hasn't been the case but that's another story for another day.

It's now 2130, George is all settled and sleeping and I know I should be getting some sleep but I know that his feed finishes in 30 mins, then he's due some drugs at 2300 and by the time he's had them he's probably going to be awake.

When I think about my journey so far in motherhood it's been the most rewarding journey of my life, my little miracle boy has taught me so much in his short time here and I know he will be my biggest teacher in life.

Whilst we were at the hospice on Thursday I got the chance to speak to the clinical director of care - I shared our story with all the gory details and we both cried, and she said something that really struck me, children with George’s complexities are only with us on this earth for a short time, but in that time they touch so many people's lives and leave a lasting impact! I know that my gorgeous miracle boy has already done this and he is adored by everyone who meets him. God I am the luckiest mummy in the world!

It's quiet now on the ward the lights have been dimmed and I am sat here with my thoughts, the future frightens the hell out if me and sometimes I wish I could switch my brain off. I ask myself why! Why mark and I, why George. Sadly it doesn't matter how many whys it will never change, this is our life.

Feed finishes at 10pm and george is awake. Bum changed and ready for bed, George and I have a snuggle. He's awake but relatively settled. He falls asleep and I decide to give him his 11pm drugs slightly early in the hope I can get my head down. The minute I pull the cover back on the camp bed in his room and climb in I hear the familiar grunting...oh no. So back out he comes.

He settles and has flare ups untill midnight

but then enters full throttle George.

After 20 mins of screaming I decide it's time for paracetamol and morphine...that's right my miracle boy has morphine for his pain this is something I still struggle with. After 15 mins he goes quiet...morphine has worked! Sadly not George enters a seizure, this one lasts for 30 mins and after he cries and then enters into a vacant episode (another seizure).

After this george settles as well as george can asleep, upset and much the same until 4am , more meds at 5am and I manage to get him in the crib but I know that I've got to get his feed ready for 6am. When it comes I grab his formula tin, its a new one, I need to break the metal seal. The noise wakes George and the crying continues.

It's now 7:30am, George has finally settled. From experience, he will be relatively settled all day till 4ish and then it can be kick offs at any moment.

I know the complexities that George faces, but we just want him comfortable so we can make some family memories. The only thing we have done as a family is trips to hospital and the hospice which is so sad. The hope is we can get george comfortable enough so that we can make family memories.

N, xx