|Day 3/4 at GOSH after open heart surgery|
When talking about Elijah and hospital our lives are very much defined into two time periods.
Pre op, which includes our NICU stay, hospital appointments and emergency admissions to the Children's Asessement Unit.
When we went down to Great Ormond Street Hospital in April 2015 for Elijah's heart surgery.
I can remember every single thing about those 5 days.
What we ate.
What we wore.
Where we went.
It only takes something small, a smell, an alarm and I'm back there again.
Elijah is now on 18 monthly check up appointments with his Great Ormond Street Consultant who has been in charge of his care for 4 years now.
Elijah now knows what to expect from his hospital appointments and is used having his heart scanned now too (along with alot of bribes!)
We talk alot about the appointment in the lead up so he is fully aware of what is happening.
The knot of fear in my stomach is back everytime we walk into the Children's Department for his appointment and doesn't ease until I see his heart on the screen and am told nothing has changed.
Elijah will have appointments for the rest of his life and will eventually be transferred to the adult clinic.
Elijah doesn't know any differerent, he has also gone to the hospital and always will and this is part of his everyday life.
It has taken a couple of years for him to be compliable during his appts being so young he just didn't understand at that age.
Now he is older he does understand alot more.
I sometimes wonder if he will come to resent his hospital appointments but they are going to be the one thing that is essential in monitoring his condition.
As much as I can ensure he eats healthily, rests and I keep his as well as I can I cannot see what's going on in there or know how to see if things have worsened.
It is only after we leave we our appointment for the next year or 18 months still with no resteictions that I begin to feel the knot ease slightly until the next appointment or illness.
I will be blogging every day in Feb and taking part in the #CHDphotochallenge to raise awareness this heart month.