As I wrote my last post I re-read my previous ones and remembered that I finished in a rant about being right about Ted’s knee and never updated again.
So back track, quick retelling of the story…
He was originally admitted with sepsis and septic arthritis of the knee. He had emergency surgery to aspirate his knee. Moved to the ward and his doctor (Dr House) said don’t send him home til he can walk, if he can’t walk get physio involved.
We were sent home anyway. A week at home and no attempt to walk. Came back for check up, readmitted, MRI showed leukaemia and leukaemia treatment starts.
Kept getting fobbed off with, “Chemo knocks them off their feet.” I was like, but he was off his feet two week prior to chemo…
So they change their answer, “He already had leukaemia so would’ve ached.” Me… so why only the one bad leg aching? He’s moving his back and arms.
A lot of Mrs Jumbo-ing went on before the finally x rayed and said oh yeh that’s not good. They thought he had a bone infection but then orthopaedics and haematology banged their heads together and decided it was abnormal but normal for leukaemia and nobody could understand why this pissed me off and I still haven’t had an answer.
When an experienced bone doctor looks at an x ray he would do one of two things…
a) look at the medical notes and then look at the x ray in relation to the child. His response would be ah yes there is an abnormality there if this were a fit and healthy child but given his aspiration and leukaemia history, I would expect to see such irregularities. So this is normal for this child, no concerns move on.
b) he hasn’t looked at any notes but saw the x ray and said flip me that is a leukaemia bone, do they know this? Just as my Dr House looked at his MRI and said yep it’s leukaemia, can’t say officially until bone marrow but I know my shit and it is. (Not in those exact words.) Also, the doctor that conducted his MRI was giving this look that I knew it was leukaemia. Maybe I’ve watched too many episodes of The Mentalist but I can read people and he felt sorry for Ted.
The overall point being, if you’re an expert in your field you know your shit. It doesn’t need a board meeting to put your view forward.
So nobody really acted on those abnormalities and I still don’t know what that was about.
I kept saying his knee was infected and nobody listened and then finally his knee was swabbed and put on antibiotics. My kid had a hole in his knee for weeks and nobody thought this was an issue. It was like a little volcano.
Eventually the swab came back and it was pseudomonas. Fucking pseudomonas! This is a deadly bacteria particularly for, wait for it… immunuocomprimsed. FFS. So if I hadn’t diagnosed my kid and that seeped inwards fuck knows what could’ve happened.
It gets even worse… they have a specific antibiotic that targets that bug but were going to leave him on the standard antibiotic. I’m sorry what? No lie, I had to ask for the drugs.
Back to to the pub analogies, I see you’ve ordered the steak there sir, I recommend this lovely red wine alongside that dish. Here it is in stock, readily available. But I’m going to give you this sparkling rose instead. WTF.
Seriously. It’s really hard sometimes because yes we are lucky to have the NHS and Birmingham Children’s Hospital but c’mon! I am just constantly fighting for what Ted needs and it shouldn’t be like this.
Oh and it gets worse still… a few days prior to this they were trying to kick us out of our room into a bay. I was kicking up a fuss saying until you can tell me what that knee is, you can’t assume what it isn’t!
So youre putting Ted and other kids at risk by moving him. They lied and said a baby needed to be put in isolation and kicked us out. When the swab came back we were swiftly moved back to a private room. Oh so what you’re telling me is… Momma Knew Best!?
Ted was on antibiotics for his knee for 2 weeks and a wound specialist had to assess him and gave him cream and dressing so to help it heal.
Over two months later, the hole almost closed.
Since nobody has a conclusion, I’ve used logic to determine what happened.
When Ted had his original surgery, he picked up the pseudomonas bug. It was a surface infection so wouldn’t have flagged in his blood but it was stitched into the top layers of skin. When the stitch was taken out, it awoke this bug and inflamed his knee as it tried to escape out from the wound site.
It remained a skin infection, cellulitis, but a serious one which explains why he didn’t have particularly worrying temperatures because it hadn’t gone inwards too much.
The pain from this bug was enough to take him off his feet. He didn’t moan about it because he just dealt with it by staying still. It would irritate with movement because it’s a joint.
The hole was about the size of the tube that was put in during surgery so basically he never healed because of the bug and the stitch was holding all the shit in.
Since nobody can offer any answers, this is the most logical one.
Emergency surgery often results in infection and obviously the infection is better than dying from the original problem… if they actually treat the problem and don’t send you home.
Similar thing happened to me with Ollie, emergency section resulted in infection. Nobody would complain about an infection as a result of saving mine and Ollie’s lives, but again they shouldn’t have sent me home to die. I should’ve been treated sooner.
I can’t wait for the day when I can buy an old campervan and live a drama free life touring the British coast…