This is my magical Minty. At 16 months she is showing me a thing or two about life, always smiling and just carrying on with things despite facing things many adults with never face. But today I am feeling angry. No wait.. tearful, optimistic, scared, exhausted, worried. I’ve no idea really. A mixed bag of emotions. I would say the past few days have been unpleasant. Though the extra snuggles and joy I’m getting from Minty make it better. As does watching her cheeky face wave at babies in neighbouring hospital rooms or her stern glare when nurses or doctors try to talk to her.
Friday was the worst day by far. She was nil-by-mouth from the morning, wheezy and waiting for a bed. At 11.30 am still no bed. Then the bed managers juggled and she had a bed. On the list for general anaesthetic and bronchoscopy at 2pm. Bags packed for a long hospital stay (10-14 days expected on IV antibiotics) we arrived. Taking her down for anaesthetic was scary. Holding her in my arms as she was put to sleep was awful. I tried to remain calm for her, snuggling and kissing. Truth was I was 20 times more scared than when I’ve had my own anaesthetic. Leaving her in the care of others and walking away in tears. We passed the time with difficulty. Uncertain what to do. Coffee?? Stomach couldn’t digest it anyway. After 2 1/2 hours of waiting we became very anxious and just wanted her back in our arms. The bronchoscopy was done, the thing that took the longest was inserting her long line. They couldn’t get a PICC in due to her chubby arms (lovely things they are) and had to settling for a Leader Cath (never heard of it), sort of a short long line. It won’t last her length of antibiotics so we will cross that bridge when we have too. But I fear it involves another GA.
Having her back in my arms screaming and smelling of sevoflurane was a huge relief. The first night was terrible, she thrashed and had a chest sounding like a bag of wet sponges. She spiked temps, had a fast respiratory rate and fast pulse. I tried to sleep in the pull down bed next to her, but found myself staring at the monitor and numbers all night. Pulse 116 – good. 168 – not good. And so it went on. Being a doctor and a mum can be a worrying combination.
Dose of steroids and some salbutamol and in the morning she was much brighter. She’s on Tobramycin, flucloxacillin and ceftazidime for antibiotics. She’s almost back to normal now. But she’s exhausted and running on adrenaline. Her nap routine and sleep is totally obliterated and she’s all over the place. I have stayed with her since Friday night and had a guilty night home last night when daddy has stayed with her. I’m getting ready to go down as soon as possible as I don’t want to miss the ward round. She’s cultured haemophilus influenzae so far. No idea what this means in terms of her normal prophylactic regime. Was hoping she might get discharged early, but probably not so. Counting the hours until she is home and normal family life resumes. Just want her home. Good thing is she comes home between doses. From about 11.30-5 we are at home, which is great. I am incredibly grateful we live 15 mins away from the regional CF team. The hospital is very good and nurses and doctors have been lovely. Thank you.
Her siblings miss her terribly. She wakes up in the morning shouting their names as if they are also in hospital ready to play! Better go now. But some leaving thoughts from being on the ‘other side’.
Bed managers are important, people are waiting at home to come in. Whole families waiting on news of a bed.
Be considerate when talking loudly during night shifts. The hospital is our home for a couple weeks and being woken constantly is terrible. Sleep deprivation is terrible. Same goes for noisy families – keep it down PLEASE!!!
Discharge letters are important. I overheard an SHO responding when asked to do the TTA. ‘WE ARE ON THE WARD ROUND. IT WILL JUST HAVE TO WAIT’. I heard the tears of an anxious mum and lively 5 year old desperate to be home for the weekend. The fact that the TTAs cannot be processed after 2pm may not be important to you, but that meant that child could be home on a bank holiday weekend and that bed would be free for another waiting patient. I’ve been guilty of this ward round business. Perhaps we should have a dedicated discharge letter doctor somedays. It would be a rubbish shift but have an amazing impact in many ways.
With regards to our skydive. Minty’s hospital stay has lead to a few changes. She’s going to be discharged a few days before and will need one parent at home with her. Doesn’t feel right leaving her. So I am jumping with the skydive team and my husband will jump 2 weeks later. Her hospital stay has made me EVEN MORE DETERMINED. This is a lousy illness, it is unacceptable. We must must must find a cure or support people and their families with cystic fibrosis. If you have a pound or two to spare, please donate to our Magical Minty Skydive Team – we’ve raised over £4400 so far. AMAZING and thank you soo much for every single penny. If you haven’t seen our fundraising video – have a peek!
More soon… By the way. I had thought about not posting as I don’t want to be constantly bombarding people with woe is us news. But lots of people have been asking.