We have been saying for quite a while that there has been something not quite right with Tim, but haven’t been able to put a finger on it. Over the last several months we have been back and forth to the doctor with various things, only a couple of weeks before this we ended up at A&E due to a rash, we had thought on the Saturday he may have chicken pox, now it turns out it was probably all related.
After a few days on the iron medication we thought he was reacting to it. He appeared to be swelling slightly so we would give him antihistamine and the swelling would go down. Since then we have discovered that his issues often cause swelling in the mornings after lying down in the bed which goes down as the day goes on, mostly due to being upright and the fluid moving to other parts of the body. So the antihistamines we were giving probably weren’t making any difference, but by that stage we had stopped giving the iron medication.
The next day we were back at the GP explaining about the swelling, also the slight nosebleed that seemed to be constant, however we were just told not to worry, probably a reaction to the iron, but he didn’t seem that bothered or interested.
By this stage the staff at nursery were also getting concerned about him, they, like us had noticed how little he was eating, the fact he seemed generally not himself and they had reached the stage that they felt his trousers looked so tight that they found him some for a child much older than him.
By Wednesday night we had a 40minute nosebleed. This might sound worrying, and yes it was but now looking back at least it started things moving.
The nosebleed had stopped by the time I headed to the hospital with him, but we were advised to take him anyway. When we got there luckily it wasn’t too busy, we were taken through and put in a small cubicle, the nurse was very apologetic that she had no bed at the time, but could at least start the ‘ball-rolling’ paperwork wise etc. It turned out that she was one of the ones that had been on duty and seen us when we went in a week and a half earlier with the rash. This was the best thing that could have happened as she remembered Tim, she wasn’t particularly bothered by the nosebleed as she took one look at him and could see that his stomach looked quite distended and turned to me and said
there’s no way he is going home until we have found out what is going on
it was so good to know that someone was finally taking notice and agreed that something wasn’t right.
So we were moved into a room with a bed and examined by a doctor, by now there was also blood in his urine.
The next few hours went by in a bit of a blur, we went for x-rays, we had bloods taken, urine samples collected and cannulas inserted.
Then came the most frightening bit, or maybe it was just the bit that really made it hit home just how serious things were.
They started putting fluids into him and all of a sudden they stopped as his blood pressure wasn’t good, and next thing I know we were being rushed through to the resus room.
It is not an experience I want to go through again in a hurry, but the nurses were just amazing, the one thing they ensured at all times was that I was involved with what was going on, immediately he was being moved one of the nurses stepped back to make sure that I was also coming along and knew exactly (well as much as they knew at the time) what was going on.
Luckily we were never in a position to need to make use of the facilities in the resus room, but we were there just incase before they pumped in anymore fluids.
There were then another few hours of waiting around while discussions went on between doctors about what might or might not be wrong with him (initially they thought it was a blockage in his bowel so were thinking it would be a surgical case) and a lot of phonecalls to decide which would be the best hospital to send him to, yes some of this was probably based on where had bed space, but I know that most of it was discussions on which hospital would be best suited to deal with him. There was mention of sending us to University hospital of Coventry and Warwickshire as they had space, but the main discussions were between Birmingham Children’s hospital and Leicester Royal Infirmary (LRI) Once it was decided it wasn’t going to be surgical it was felt that LRI would be the best choice, so then we just had to wait for the ambulance.
Through all this they never forgot I was there, I was kept informed all the way through of everything that was going on and they even ensured that they found me things to eat and drink as I hadn’t had anything (not that I was hungry)
At around 3 or 4am we were transferred from George Elliott hospital (GEH) in Nuneaton to LRI by blue flashing lights accompanied by a doctor from GEH.
I vaguely remember arriving and being ‘settled’ into a room in the High Dependency Unit, can you really be ‘settled’ into a room at that time in the morning when you’ve had no sleep and are worrying about your child?
A bed was set up for me next to Tim and we were left to try and get some sleep ready for whatever was going to be thrown at us the next day.