Lauren’s first bout of pseudamonas hit us when she was 18months old. When cough swabs are taken each clinic, they are then sent off to see if cultures grow anything bad. The phone call for this came 2 weeks after we were in clinic. Dr Lee called a wednesday morning and gave me the bad news. She was to be admitted for 2 weeks IV antibiotics. This was about to a very long 2 weeks!

I cried and cried and then let everyone know. I cried some more. Hospital and Lauren have some bad memories attached to them so I probably got a bit more weepy than was necessary but I couldn’t help it. I was sad.

The week Dr Lee had called, Lauren had started being unusually unwell. With a bit of a cough, but the 24 hours before the call she got worse and we were due to call for advice anyway. She threw up all wednesday and thursday night. Just sputum. No real food as she wouldn’t keep anything down. So this all made sense really.

Once at hospital they tried to put a ‘line’ in her so they could administer the IV’s. This was no fun to watch. They’d given her a drug that sent her dopey and when it wore off she wouldn’t remember anything.  Lauren is a far better patient than I am watcher. She takes pain so well and barely whinges. Most of the time. Which is something special to watch. But I don’t like having to toughen up and watch needles going in my child. However I think this has made me a bit too tough in some situations.

Once the line was in IV’s began, and Lauren started peeing for England, and the other end started being like water. So much fun haha!!

Hospital life is pretty boring, literally nothing to do, some toys, play time, but mostly sat cuddling doing absolutely nothing bored out of my brain. Jonathan went to work again during the days because he works so close to the hospitals and it didn’t make sense for us all to be bored!

Some people came to see us, not many at all. Some let us down and said they would but didn’t. Not normally as annoying as I found it during this very long two weeks!

About a week in, Lauren caught the line in her leg and pulled it out. Which meant she had to have another put in, in a vein in her groin. She had to have it done by a surgeon. We got to take her up to the room, and I put the mask on her face this time and held her till she was sort of knocked out. The surgeon was a big ginger ass. I hate him. Rude and arrogant and I was not happy that my baby was under his care. I had no choice though so we waited to be called. She had been starved all day long this particular day and so when she woke up and came back to the ward, she threw up and had a temperature. She was screaming and I was getting more and more agitated. The man nurse wouldn’t give her ibuprofen, telling me he knew best because he’d done the job for 18 years and ibuprofen can make CF patients chesty. I told him I’m her mum, no doctor had warned us of that and I’d been giving her it since she was tiny and it worked. I really didn’t like this bald loser either. I know best, I’m her mum and anyone who didn’t respect that didn’t have my respect.

We finally got her settled and to sleep and we went back to Dave and Hannah’s (angels!).

The next day we arrived, and the same man nurse told us that in the middle of the night they’d had to give her ibuprofen and amazingly (ass) it settled her. I did want to hit him. Even more so because we’d arrived at 7am and he’d already tried feeding her. She threw up on him. Good girl. She needs omeprazole first thing, then to wait about 40 mins to an hour before food. What is hard about that?!?!?!

I should clarify, I did try staying with her for one night. But all they have for parents is some plastic cheap recliner that didn’t recline properly and I got no sleep. This doesn’t bode well for me in any situation. It certainly doesn’t when I’m surrounded by people who think because they’re nurses or surgeons or care worker suddenly know your child better than you do. I wanted to punch more and more people during this stay.

The new line was working fine and covered up by clothes so she left it alone. She was getting stronger and better the more we were there but I could not wait to get out of there. Towards the end of her stay we arrived one morning and she was in clean clothes, clean dry nappy but her bed was soaking wet. A nurse had changed her, but not her wet bed, then put her back in it. Seriously! The simplest of jobs and a professional thought this was OK to do? I was fuming and I did complain.

I’m done being polite. I just want things done right. I got to hospital at 7-7.30 every morning and didn’t leave until she was asleep. I did everything and the competent nurses understood to just leave us alone. The idiots annoyed me still but I let them know. Mostly a god job is done. But if you don’t have people skills you should NOT be a nurse or work with people in a hospital!!

We went home after 2 weeks and had another 3 months of Ciprofloxacin oral antibiotic and colomycin nebulised antibiotic. Watery pooey nappies for 3 months! The good news though-within those 3 months she tested clear of pseudamonas. Phew! It was all worth it. I’m sure I aged 10 years, but it was worth it. She was clear of a very dangerous infection.

Back to our version of our kind of normal. For now!