surgery’s, infections and adjusting to life in hospital
11 September 2015
Morgan’s headaches are getting so bad! Some days he’s rolling around in agony, and has to be given not only paracetamol and ibrufen, he’s having morphine. He’s still vomiting so much, he’s on 3 anti sickness medications and steroids. But today he’s actually not been as sicky which is good. He ate pot noodle and custard creams, Not the best of food choice but if that’s what he fancy to eat, then so be it. I’m just glad to see him eat.
15th September 2015
Today has devastated me and made me so anxious.I was sitting on the bed playing with Morgan,and I heard the mum in the next bed start shouting, then all the emergency alarms going off. The nurses rush over,They draw the curtains and start resuscitating the little girl who’s suddenly stopped breathing. She had just had an operation that morning and had a shunt fitted. They stabilizer her and the doctors come and she’s been taken to intensive care. All day i can’t get that womens panicked screams out my head. That could be Morgan, he had the same operation.
18th September 2015
Morgan went down to surgery to have his stitches taken out his head again, lets hope it doesn’t leak again. And heals up properly. I don’t think seeing him be put to sleep will get any easier, He puts up such a fight it breaks my heart!
Later that night, Morgan had a little walk up and down the ward. He’s still weak but it’s nice to see him up. He’s also eating loads tonight must be the steroids making him more hungary. Hes still on his feeds too.
We read so many books tonight, played cars and watched a few films. Tonight was a good night.
19th September 2015
My mum and dad have come over today and brought Jayden and Regan. We’ve all planned to go to wollaton park. Morgan was supposed to be allowed to come in a wheelchair, but he’s too poorly today. He has a headache and is being sick. But mum and dad said they will watch him while we spend time with the boys and Heidi. We had a lovely day, we laughed so much and for a few hours it felt normal. When we got back to the hospital, Morgan was screaming in pain.Mum and dad said he’s been bad all day, but they didn’t want to worry us and wanted us to have a nice time.
Coming back and seeing him rolling around in pain with his head, shouting help me was heartbreaking. I felt immense guilt, how could i go out and enjoy myself and actually laugh. when my boy was stuck on this bed in pain? I hated myself.
20th September 2015
Another bad day, Morgan is in a lot of pain, And has a lot of pressure. He’s screaming then he vomits then the headaches ease, Then it builds back up again.
It was my day to sleep at billys that night (clic sargent house) i cried on the walk to billys. I sat in the kitchen and sobbed i felt so much anger that night. Why was Morgan being put through this? When would all this end? I honestly thought my heart would break. I felt so alone and so hopeless.
21st September 2015
Like usual I would get up first thing, quick shower and straight over to the ward. When I got there Morgan was screaming! Ste said Morgan had a really bad night and the pain team was on the way up to see him, as nothing he was having was helping. He also had a big lump come up on the back of his head! The size of a tennis ball.
The surgeons and oncology came over as usual in the morning doing their ward rounds. They said they were sending Morgan for a scan but not till 3.30pm!
I wasn’t happy and I told them this is so wrong to leave a child in this much pain!
The nurse told me to record Morgan in pain to keep recording of it. She wasn’t happy with the doctors. But she doesn’t get a say.
Ste parents have turned up, they usually come everyday after work. Anna goes mad when she sees how Morgan is being left. I’m glad she here, me and ste are so emotional drained today, i feel i’m on the edge.
Finally Morgan goes for his scan. They said his scan looks fine. No pressure, shunts working fine, and the lump that has come up on his head is bit of fluid but it’s soft and there not concerned.
There giving him more oramorph then he should have. He’s having it every four hours, but they’re giving him small doses in between now. so he’s constantly topped up. As well as paracetamol and ibrufen. After his scan he managed to sleep a little.
24 September 2015
At last they have found out what is wrong. After a heartbreaking long fews days. He has a shunt infection. They have taken him straight down for surgery. He’s having his shunt removed and a evd put in again. When will this end for him? We knew something wasn’t right with him these past few days, a couple of the doctors even asked us if we thought Morgan could just be crying cos he didn’t want to be here and if the pain was in his head. The nurses who have been seeing Morgan everyday knew it was something more.
Later back on the ward, Morgan had a nap and woke in a great mood. He’s very sore and it hurts for him to turn his head! But he’s woke up and asked for chocolate.
30th September 2015
A brill day for Morgan, he’s been up and playing and actually been smiling and laughing! Hopefully things are on the up.
5th October 2015
Got told Morgan has e coli, then 20 minutes later said sorry we got the wrong child, Morgan has cocci infection. His stitches on the back of his head have also not come out by themselves. So tomorrow he’s having surgery to have the evd out as that’s now infected. And a new one back in and having his stitches out..
I’m considering moving hospitals. Seems one thing after another here.
8th October 2015
Morgan having blood transfusion today.
11th October 2015
Today has been one of the best days yet, Morgan is in a great mood. The infection markers are going down, Morgan put his arms around me today and said my mummy! He just melts my heart, I am so blessed! Stes mum is staying with Morgan tonight, and me and Ste are going for dinner out and a bit of time together.
15th October 2015
Morgan is having a surgery today! yet again his third evd infection. Just when we thought the infection was going.
Iv took so much for granted before now, i’d give anything for a normal boring life again and all my kids back together.
17th October 2015
People in my area have started raising funds for Morgan.
27th October 2015
Another day another surgery, That’s how it feels at the moment!
Today has been a planned surgery though. The infection is all clear, today they took his evd out! And put a shunt in, but this time they put it on the opposite side to where his last one was.
He was down for a long time. and all these surgeries never get easier! Me and Ste usually go grab a costa, have a little walk and then go back to the ward. I always get so anxious when he’s been down for a while! A few hours later we get the call to go to recovery, I literally leap down there to see him.
Before the surgery, the surgeons told us they would need to shave Morgan left side of his head, his right has already been shaved. And his hair was getting so long and smelly, as we couldn’t wash his hair with all the infections and evds he’s had in. So we agreed to let them shave it all off. And it’s better now then seeing it fall out with chemo, which he will be starting soon.
As soon as I saw him, I cried. He looked so poorly. Like a child with cancer. Which he was, but i still didn’t want to think about it.
28th October 2015
Morgan is up and about already. He’s such a little fighter. My boy, my hero.