I'm hesitant to even write anything about the last two weeks in case I jinx things and we end up back to square one, but I think that the worst is over, I really do. I could write fifty pages about it but I won't.
Don't read it if you don't want to but I feel like just getting it out of the way and then I can resume normal transmission.
I'll do a dot point synopsis with the highs and the lows.
- Tuesday night week before last - P was still having terrible spasdomic tummy pain. Utterly terrifying. M took back to ER at public hospital this time. Tests including ultrasound done. Not a surgical emergency. Probably something called Mesenteric Adenitis causing intermittent Bowel Intussusception. (Google it friends).
- Wednesday - admitted to paediatric ward from ER after being given morphine for pain after I arrived. Morphine for P, not me ALTHOUGH DAMMIT I COULD HAVE DONE WITH AT LEAST A SEDATIVE SO THOUGHTLESS. Once in ward M goes home to try and rest. Nurses take her blood pressure. Is off charts for a kid her age. Panic ensues. I start to get that bad, bad, bad feeling that things are getting out of control and something terrible is happening to my child. M comes back in. Surgeon thinks BP due to pain. Paeds and nurses don't. They are worried. I am too. TO SAY THE LEAST. BP comes down during the night but still high. They scan her bladder. All looks ok. M goes home. I stay the night in the ward. They give her Buscopan for her tummy which seems to help enormously.
- The night in the ward - P, dosed up on morphine and Buscopan, sleeps peacefully. I lie crazy eyed and wide awake on the lumpy pull out couch bed thing listening to sick babies scream and cough.
The little girl next to us with leg in traction snuffles and moans loudly from pain all night. Her mother also breaks the silence regularly with her own brand of Sleep Talking Tourette's, shouting things like;
"NO! I do NOT have any money on me!"
I get up a few times to the 12 year old boy in the other bed with a burst appendix whose parents didn't stay the night with him. His mum had a tiny baby and I heard his Dad saying to him "Now listen mate. I need a good night's sleep and I'm not going to get it on that couch. Alright mate? It'll be alright. We will be back tomorrow".
I hate to judge but...well, you know...I did. I don't know what he thought the rest of us were sleeping on, luxury king beds? Tool.
- Thursday Morning comes and P is hungry and seems ok. It's all a blur really but I manage to have a shower and brush my teeth. My posh private maternity hospital rooms have had their own bathrooms, I'm not used to the communal shower caper in a public hospital. As I get my toothbrush out of my bag and put paste on it, I drop it in the sink. I rinse it off and use it anyway, so desperate am I to get rid of the toilet that was my mouth. I remember wondering if I would live to regret that germy decision. READ ON TO SEE IF I DO!
- P has a blood test, a chest xray, another detailed abdominal ultrasound. She is very brave. The pack of glam young whippersnapper ward paediatricians have taken over her care from the surgeons and are frightening the life out of me with their questions. Eventually it is revealed that they are testing for some forms of childhood cancer that give kids high blood pressure. The xrays are fine so it's not too likely but the blood tests will be a while. Long story short, they discharge P with advice to take Buscopan and Panadol if the pain returns.
- That night, we give P Buscopan before bed. She complains of "itchy skin" which is weird. She goes to sleep and wakes late that night with tummy pains. We give her more Buscopan. The itchy skin comes back but she finally sleeps when we put her in our bed.
- Friday. M and I realize that the itchiness is probably a reaction to the Buscopan, so we stop giving it to her. M goes to work. Dad comes to help out. P seems ok during the day until evening starts to fall. She starts writhing on the couch again, knees up to her chest, then arching her neck, eyes glazed. I am terrified. She vomits everywhere. Dad is frightened too. M comes home late after stopping by the chemist. We try and give her Buscopan or Panadol - she vomits it up. "To the hospital again", I say. Dad drives M and P back to the public hospital. I am shaking and feeling hot and my worry has reached such levels that I actually just totally stop worrying for fear I will die from it. I have a long hot shower and crawl into bed still shivering, with the phone next to me. I get regular messages. The ER at the public hospital is too busy, it is Friday night. They are going to the private hospital. Dad waits with them until she is admitted again and then comes home. I lie feeing hot and cold and shivering in bed until he returns, and get up to take my temperature. It is 39.8C. THIS IS WHERE I START TO REGRET BRUSHING MY TEETH WITH THE HOSPITAL SINK TAINTED TOOTHBRUSH. FOOLISH WOMAN!!!! I take Panadol and try and get some sleep.
- I ring Mum in the morning. I am sick, really sick, shivering and my throat is swollen and agonizing. Dad gets up with the baby. Mum arrives. Dad leaves. I lie on the couch shivering and sweating for the whole day. P has tests and all sorts. They don't see any evidence of the bowel intussusception or the Mesenteric Adenitis. Mum and B go and visit. I am confined to the house while my girl is at hospital, with a still undiagnosed and painful illness. P has another terrible night of pain, and morphine. She has a barium X-ray to rule out twisted bowel, and another ultrasound. M tells me on the phone they think they found something on the scan, maybe an inflammation. We are so happy that maybe there is a reason. He rings back later. The news is not good again. The radiologist doesn't
believe that the ultrasound shows any inflammation or anything. Back to square one. Paediatrician tells M he has no more answers and we will need to transfer P to the Royal Children's Hospital in Brisbane, where they have a paediatric gastroenterology unit. Nightmare nightmare nightmare. I cannot believe what I am hearing. I try and sleep, M has another awful night with her in the hospital. I spend my time googling hideous chronic bowel conditions that lead me to the worst conclusions ever. SOOTHING. I DON'T THINK.
- Next day, our paed consults with his more experienced colleague. I've gone to the doctor and gotten antibiotics for my infected throat so I am able to come into the hospital. This other paed dude is much more reassuring. He thinks there are things we can try before we have to go to Brisbane. He removes all lactose from her diet and suggests she avoid fruit and eat only small amounts, regularly. He does a stool sample and puts her on that kiddie laxative Movacol to make sure things are moving smoothly there. We are much happier. She seems slightly better. I hang around until the late evening. She doesn't have another episode. I go home and M stays with her. I sleep soundly.
- In the morning (Monday, the public holiday) I ring as soon as I can and M says she only had one less severe episode during the night, which was controlled by endone. I go into the hospital. We talk to the paediatrician again and he is happy to discharge her. He answers all my millions of questions and is fairly certain it is a gut motility issue as a result of gastro or similar virus. We take her home. I am terrified of the night coming. Her pain, when it happens, is unbearable and frightening. But she doesn't have another episode. We buy millions of litres of lactose free milk, a gazillion tubs of lactose free yoghurt, and hope for the best.
She hasn't had another episode since. She seems better by the day, and eating like a horse. We had a follow up appointment with the paediatrician on Friday, and there is still no proper diagnosis. We've got the referral to the gastro paed anyway and I will make an appointment. We haven't got the cancer blood tests back yet but everyone is VERY sure they will be fine.
But so far so good. PRAISE THE LORD. The prayers and support of many got us through. I don't know how people with chronically ill children or terminally ill children cope. But I had a little taste of it. It isn't possible to keep the level of worry and anxiety up the whole time. It just isn't possible. I had to stop worrying because if I didn't I was sure I would become bedridden or insane, and a sick little girl needs her mother to be ok. So the thing is, you just stop worrying and start coping.
It's all been a timely lesson for me. STOP THE WORRYING SARAH. AIN'T NOBODY GOT TIME FOR IT. And it will probably KILL ME.
Although every time we hear her stir in the night, every time she coughs or cries out we both jump out of bed, terrified she is having another episode. But she hasn't.
Here endeth the saga. I hope. I am crossing every finger, every toe, every digit possible.
If you have read this far GOOD FOR YOU! You deserve a nice treat. I will think of something.
TALK ABOUT BADLY WRITTEN STREAM OF CONSCIOUSNESS. JAMES JOYCE I AM NOT!
Anyway so that's got that out of the way. Let's all move on with our lives shall we?