A Quest for a Normal Life

In the UK more than half of the people affected by Cystic Fibrosis (CF) will live past the age of 41. As a parent of a child with CF you have various statistics in your mind at various times, but most of the time you try not to think about it. A few months ago I questioned that statistic as we thought that our Minty wasn’t going to make it through her chest infection aged just three. I can write about it now, but that was a shocking moment. 41 years old seemed like an eternity. As doctors my husband and I knew she was seriously ill. Her respiratory rate hit 70, heart rate 180, temperature was 41, she needed oxygen to maintaining her saturation and had not passed urine in 24 hours. She sustained this for hours and I wondered how her little body could keep going having had a general anaesthetic and bilateral lung collapse. We thought she was going to have a respiratory arrest. Those days were bleak and cystic fibrosis had taken over her life. But she recovered. We recovered.

It’s interesting to see how a three year old perceives her condition. She knew she was ill and knew that hospital was where she needed to go. Her choice of clothing that day is reflected in this poignant picture. She had planned this outfit to arrive in hospital. It was her best party dress. She walked into the ward proudly and then sat on the bed. She looked down and tears filled her eyes. I asked her if she was scared. ‘Yes, mummy’, we paused, snuggled and then she jumped down holding back her tears and played with her dollies.

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She choose this dress specifically to go to hospital. She walked onto the ward proud, sat on this bed. When she looked up, there were tears in her eyes and she said she was scared. She then, held them back and started playing. Tough.

This week she completed her first lung function tests, getting 110% of predicted. She’s getting ready to start nursery soon and we’ve written her care plan. I thought I would share our philosophy for living a normal life, with normal activities and hopes and dreams.

‘We believe Minty is a magical little girl! She inspires us daily and is tougher than we imagine. She is independent, funny, caring, sociable, exuberant and extremely adaptable. She does not see herself as ill or suffering. She sees herself as any other little girl, but sometimes she goes into hospital and every day she takes medicines to keep her well. This is her normal life and we make it normal for her. Even when she is really ill and goes into hospital, she goes there to get better and in her last admission she knew she needed to go to get better. CF is a journey that we all learn from all the time but we have developed a philosophy that we hope anyone who looks after her shares. Minty is number four of four children, she has one older brother and two older sisters.

We only use positive language surrounding the condition. She is living with it, she is not suffering, she is not ill. Medicines are not ‘yucky’ or inconvenient. Avoiding certain things are to keep her healthy not ‘stop her from getting sick’. Physiotherapy is to keep her fit and healthy. When she doesn’t want to do it we suggest that she wants to feel great or well. She remembers what it’s like to be unwell and go into hospital, she is able to make the connection and will always pick to do the things that keep her healthy if she needs a bit of encouragement.

When talking to others in her presence about her condition we remain positive in our wording and attitude. This enables her to remain positive in her attitude to treatments, and by her engaging actively that will give her the best chance of a healthy long lifetime.

However, CF is a life shortening condition with a life expectancy in the 40s. With good care, children like Minty are looking forward to much longer life expectancies. It is also important to allow her to feel rubbish, angry and sad. It is important to remember that Minty getting a cold most of the time will be fine, but frequently may result in two weeks of oral antibiotics or sometimes a hospital admission with a general anaesthetic, PICC line insertion and 2 weeks of intravenous antibiotics. She has had 3 admissions so far, we hope to keep them to a minimum by following good CF care. There are many treatments in development, gene therapy, medications and more. As a family we keenly await these for her, we fundraise for CF Trust and keep an eye on research.’

Here is Minty running a toddler race. She may be last but she’s living life to the max.

Follow Magical Minty fundraising efforts on our Facebook page or twitter @magicalminty_cf.

 

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Being a Junior Doctor & Parenting a Child with Cystic Fibrosis

Last week junior doctors staged another strike in opposition to the proposed enforcement of Hunt’s Junior Contract. A contract which most doctors believe will endanger patient lives and destroy the NHS. On the eve on the third strike, while my daughter recovered from anaesthetic I wrote the following piece.

“My husband and I are both junior doctors. Unfortunately, we cannot join the picket line this time.

We aren’t there because we are in hospital with this little one.

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Smiling despite low oxygen saturation and high fever.

Our three year old daughter has cystic fibrosis. She’s not been well recently and she’s in for a general anaesthetic, bronchoscopy, fixed intravenous line and two-week course of heavy duty antibiotics. The NHS is so vital for her care and future. We have no doubt that she will be well cared for the next two strike days.
The junior doctor fight is for every patient and every person working in the NHS. Doctors looking after her (and everyone else) should be well rested, motivated and valued. She starts nursery soon, we’d like to see her and our other children at weekends. We already work many weekends away from them. CF shows us that life is precious; it is too short.

Doctors involved in her care over the next two weeks will be many; junior doctors, respiratory consultants, anaesthetists, radiologists and microbiologists. But also ward nurses, recovery nurses, operating department practicioners, specialist nurses, student nurses, ward clerks, pharmacists, pharmacy technicians, porters, health care assistants, domestics, dieticians, psychologists, physiotherapists, radiographers, play specialists and more. Behind the scenes are lab technicians, estates workers, IT staff, medical secretaries, central sterile services team, theatre managers, ward managers, volunteers, security staff and a huge long list of others.

We all work together for our patients. We make something pretty amazing. To think that adding just junior doctors to the ward at the weekend is all that is needed ignores the rest of that amazing team.

When times are tough, we remember this phrase, ‘Dum Spiro Spero’. It means while I breathe I hope. Perhaps one day there will be be a cure for CF. We try to remain hopeful about the junior doctor ‘fight’ too.

Junior doctors are standing up for the future of the NHS. Let’s all stand together. Good luck, we’ve got our badges and banners on the ward ready for tomorrow. She says a big thank you for everyone looking after her.

Mr Hunt, I request that you engage with us and take our concerns seriously.”

Since then, she has been recuperating in hospital and faces further treatments prior to discharge home. The contract in short, may mean many doctors simply cannot afford to work in the NHS, whether financially or emotionally. Minty’s story was featured in The Independent and on Doctors of the NHS.

As always, fundraising for the CF Trust is a goal. Minty’s Godfather and family friend aim to cycle from London to Paris to raise money. Find out more about Magical Minty Cycling Team on Facebook or donate here.

To understand more about the Junior Doctor contract this recent Facebook post is an excellent summary. 

No Spoonfuls of Sugar Here

Having a positive attitude to taking her cystic fibrosis medicines helps my 23 month old take her morning medicines with ease. Recently she’s decided she wants to do them herself. Took a long time for her to get to this stage. Many of these, especially flucloxacillin, taste not so great. Next steps will be her own Creon and much more. Normalising this with positive language. No vile, yucky stuff here. We love CF meds to keep her healthy!

Greater Than The Sum of Its Parts #PowerOfUs

Much of what we do in medicine involves the work of teams. To deliver medical care however basic or complex involves the work of more than one professional. Ideally, shared decision making involving the patient and their families helps to deliver high standards of care using best practices and weighing current available evidence. Working within that team requires respect for others, shared and open goals, a desire to seek and prevent potential errors and continuous re-evaluation to improve our work. These words may sound like ‘buzzwords’ or ideals, but their value has become more evident since my youngest daughter was born nearly two years ago.

It was a Friday afternoon, we’d had a lunch meeting about how the acute medical take needed to work; how we needed to work together to improve patient care. A consultant listened as we shared our experiences, where things needed to improve and who could do what. My phone rang with no caller display; I knew it would be the hospital calling, but about what? It is those personal calls at work that twist your stomach.

The news was layered slowly and deliberately, your daughter has grown Pseudomonas with antibiotic resistance and a bio-film. Again it felt like our lives had been shattered, the pieces we had carefully constructed to build a normal life and retain hope for a beautiful future seemed in disarray. I was unable to re-order them into any meaningful shape. The trouble with being a doctor and a parent of a child with a serious chronic medical condition means you know too much. I know the implications of this and imagine the worse outcomes possible. My darling toddler, the situations she must deal with.

Cystic Fibrosis is a hidden condition. Here she is a picture of health and happiness!

Cystic Fibrosis is a hidden condition. Here she is a picture of health and happiness!

In she went for two weeks of IV antibiotics. There for a good few weeks  we were in despair, hope lost. I sought the fragments of hope, I looked for it and couldn’t find it. I know that the outcomes of young patients with Pseudomonas can be tragic. I sought inspirational stories from those with young children with Cystic Fibrosis who had cleared such a strain of Pseudomonas. I found none.

We made it through the weeks in hospital. But we felt different. I returned to work a different person. I feel for every patient whose stay in hospital is longer than they imagined. Who wait, two days or two weeks for test results. Who sit without families, without basic creature comforts and lose levels of dignity and privacy which we take for granted. I know the feeling of waiting for the ward round, that piece of news you need, something, anything. Doctors breeze in for a few minutes and are gone again. Packing your bags and going home is the best feeling in the world. After her hospital stay we drove to her next follow up appointment nauseated with worry. Future feeling very bleak.

My daughter (and us) have a team of people who look after her. A team made up of doctors, specialist nurses, physiotherapists, dieticians, psychologists and social workers. There are several such teams dotted across the UK caring for children just like ours. Social forums ask ‘what’s your team like?’ People discuss varying advice given and there seems differences across teams and situations. People won’t even move house for fear of having a different CF team! CF is an individual condition, what works for someone might not work for someone else. Atul Gawande wrote about a determined doctor who redefined the approach to CF care and how they deliver excellent care as a team. CF team care perfectly demonstrates how the whole is greater than the sum of its parts.

As I sat waiting for the doctor he arrived. Bright, enthusiastic and engaging. Matter of factly he told me her latest cough swab was clear. Relief was almost too difficult to express, it bubbled slowly from within, but too hard to fully allow. It will take days to sink in. However, it was what I learned that day was about the power of teams and a team ‘mission statements’ to borrow corporate terminology. He told me they believe in Aggressive Antibiotic Eradication Therapy (AET) for Pseudomonas. ‘No need to feel bleak at all,’ he said. And here’s why.

We got her CF on newborn screening. These kids are doing very well.

We are monitoring her like a hawk. If we suspect Pseudomonas and can’t find it we will hunt it down. If we find it and we will do everything we can to get rid of it. If that means bronchoscopy and two weeks IV that’s what we will do. If we need to do that several times, we shall do that. That’s what we believe in here. We will not accept it living in there. We will not accept a cough as normal for her.

When she transitions into adult CF care, which she will, I want her to have no evidence that she even  has CF. And that is what we expect.

She may be too young for clinical trials, but once there is one for her, we can try it. There is lots going on at the moment.

You as a family are fully on board, you are doing her physiotherapy, you call when you are worried, you give her the treatments we recommend. You are doing very well.

We are doing very well. I had never thought of that. I had never heard those words. Her treatments and life are fully integrated as normal for us all. Or as normal as things can be. We never use negative language around her. ‘Yucky medicine’, ‘palaver’, ‘time-consuming’ are words we never say in front of her. The nurse who came into the room proudly praising her for taking ‘that repulsive’ medicine’ (flucloxacillin) easily was doing more harm than good. It took months to get her to take that with ease. One thoughtless comment could cause endless problems, luckily she is too young to decide to stop taking it. In that afternoon I left bursting with hope again. The doctor and his team have our backs. They lift us up when we are down, the guide us through this journey, they teach us, listen to us, hear us and help us. Each individual on that team plays an important and key role in taking care of her. I was struck by our daughter’s consultant sharing their team ‘mission statement’, we used them all the time in my corporate career. I used to write them for my business clients. They may be seen as ‘naff’, by they are important and make sure everyone is on the same page, with the same goals. Perhaps we should be using them more in medicine.

During her last hospital stay I really saw how the nurses really are her main carers, with no disrespect to others. They see her and us more frequently. If a patient gives a box of chocolates for the nurses only there’s a reason behind that. We doctors, though important too, blast in for moments at a time. We come in with needles, syringes, intimate questions, test results and leave again leaving the nurses and other health professionals to take care.The Reith lectures again changed my medical practice, Gawande suggests that we ask patient’s what they actually want. Do you want that test that I am ordering, the result of which may change your future, or do you want that surgery? I know why we are rushed, for I do this myself, we are busy, we may have 30-40 patients to be seen in a single morning. The pressures are on us. But some of the most rewarding moments are when we have time to ask, time to sit and talk to patients and their families. But this balance is hard. A medical career often comes at great personal cost. My child’s life expectancy is shorter than most, I want to be there for her. Do not consider me ‘not a team player’ if I want to get home on time. I need to deliver her physiotherapy, medications and nebulising treatment before her bedtime. One Friday I was leaving at 7pm (two hours late), I was rushing home so that I would see my children before bed. A patient’s family member grabbed me as I was leaving in the lift to ask me a complex question that required a measured response. That night I did not see my children.

Atul Gawande’s Reith lectures recently spoke about how medical care is too complex for one individual to deliver. Teams with individuals specific and expert roles can deliver a care that is synergistic. One part of the team breaks down and care can suffer. Not only can patient care suffer, team members themselves can suffer. However, the balance between individualism and medicine is complex. I find it hard working with others who have their own self-serving goals. To impress, pass exams, get to do something ‘cool’ at the expense of another colleague who also needs to learn that procedure. Those who do not communicate with the rest of the team, not sharing what they have done or are doing. Tests get duplicated, tests get missed. The consultant asks for patient updates and you do not know whether something has been done or not because your other team member hasn’t told you. Worse they have gone to theatre or clinic leaving you to figure out what they may or may not have done. The team member who speaks to other staff with disrespect or worse doesn’t speak at all. These individuals make the team look bad and, worse, can cause patient harm. To reiterate medicine is too complex for one individual to deliver.

Doctors regularly have to be assessed as to how they are functioning as part of a team. We ask colleagues from all disciplines to rate our team behaviour anonymously. A Multi-Source Feedback (MSF), 360 degrees, Team Assessment of Behaviour (TAB) are what they are known as. You then sit down and discuss your performance with your supervisor. You pick the people who want to fulfill the form as apparently you will most value their feedback. However, not selecting those with whom you may have conflict or personality clashes with may omit the most valuable feedback. Another important group missing are the patients. Patient feedback would also be invaluable. My MSF is currently happening at the moment. Always feel slightly nervous about them.

As a doctor working in a team can make the job much more bearable. Team work is what gets one through the difficulty of nights and weekends where stripped down medical teams care for huge numbers of patients. My most memorable nights are when working alone in different parts of the hospital we meet briefly for tea and catch up, helping someone with a job or encourage someone to take a break. It can be stressful when the only time you meet is at a cardiac arrest and dissappear shortly after rushing back to your work. Thank you to that nurse who made me that cup of tea as I nearly tripped with exhaustion at 4am in the morning and to the Senior Registrar who prescribed a warfarin I had not gotten around to doing. The domestic serving tea, the cleaner mopping the floor, the pharmacist checking your prescription are all there with one common goal to deliver safe and effective patient care. We are all members of the same team. Having just worked the Christmas period that bonding and camaraderie of being together at work is enhanced, when you know others are with

Now more than ever do I understand how teams can make or break the patient’s journey. The words you use, the part you play as part of a bigger picture of care are very important. I thank our CF team for restoring our hope, I thank the team who cared for her in hospital from the doctors, nurses, play therapists, domestics, cooks, cleaners, physiotherapists, pharmacists, dieticians, anaesthetists, theatre staff, ODPs, recovery staff and more. One special thanks to the nurse who went and got her a coco-pops bar when she was hungry and eating no food, you know who you are.

Here is to Aggressive Antiobiotic Eradication Therapy and the power of teams. Next time you’re off to an MDT know that they make a massive difference to patients.

Some of her daily meds. Just totalled up Minty's meds & care for the year just to keep her healthy! Dornase alpha £2019.10 per 3 month course Creon Micro £31.50 per pot, 5-7 per year Flucloxacillin £26.04 per week x 52 - £1354 per year Saline around £80-100 per year Azithromycin about 3-4 courses per year at £11.04 each Co-amoxiclav around 4-5 courses per year at £3.60 each Vit E 4 x £42.12 per bottle Dalivit 10 x £5.58 bottle Salbutamol - around £3.50 a year! Clenil - around £3.70 per year Colomycin £324 per 3 month course Tobramycin £3.77 per day, 2 x 2 week courses Ceftazidime £8.95 per vial, 3 per day, 28 days around £751.8 eFlow Nebuliser (specifically for CF patients ) around £800 extra eFlow kit for Dornase alpha around £300 MDT clinic follow up every 8 weeks - doctor, dietician, social worker, psychologist, physiotherapist, specialist nurse. Appt lasts 2 hours 2 x hospital stays (approx 2 weeks each) including 2 GAs, one PICC line and 1 long line - hospital bed around £225 per day Minty has had 5 chest x rays in her life Microbiology - around 10-12 cough swabs per year with results Home visits - as many as she needs from CF Team.  Meds & Nebs alone cost over £7000 This is all funded by the NHS from tax payers like yourselves. With extra support from CF Trust.  This is to say thank you to everyone involved in keeping her healthy and giving her a future.

Some of her daily meds.
Just totalled up Minty’s meds & care for the year just to keep her healthy! Approximations.
Dornase alpha £2019.10 per 3 month course
Creon Micro £31.50 per pot, 5-7 per year
Flucloxacillin £26.04 per week x 52 – £1354 per year
Saline around £80-100 per year
Azithromycin about 3-4 courses per year at £11.04 each
Co-amoxiclav around 4-5 courses per year at £3.60 each
Vit E 4 x £42.12 per bottle
Dalivit 10 x £5.58 bottle
Salbutamol – around £3.50 a year!
Clenil – around £3.70 per year
Colomycin £324 per 3 month course
Tobramycin £3.77 per day, 2 x 2 week courses
Ceftazidime £8.95 per vial, 3 per day, 28 days around £751.8
eFlow Nebuliser (specifically for CF patients ) around £800
extra eFlow kit for Dornase alpha around £300
MDT clinic follow up every 8 weeks – doctor, dietician, social worker, psychologist, physiotherapist, specialist nurse. Appt lasts 2 hours
2 x hospital stays (approx 2 weeks each) including 2 GAs, one PICC line and 1 long line – hospital bed around £225 per day
Minty has had 5 chest x rays in her life
Microbiology – around 10-12 cough swabs per year with results
Home visits – as many as she needs from CF Team.
Meds & Nebs alone cost over £7000
This is all funded by the NHS from tax payers like yourselves. With extra support from CF Trust.
This is to say thank you to everyone involved in keeping her healthy and giving her a future.

Raising a Little Lioness

‘What’s your name?’, we ask her. ‘Lion’, she replies and adds a lion roar to confirm this. Ask her again two hours later. ‘Lion’, she will reply, roar and laugh with glee. She knows her real name well. But on day 13 of 14 of our dear friends tobramycin, ceftazidime, flucloxacillin and colistin visiting if she wants to be a lion then so be it. You roar and you laugh as loud as you can. For you are our brave lioness.

Dolly has a PICC line too.

Dolly has a PICC line too.

Smiling with family!

Smiling with family!

Lioness bed hair!

Lioness bed hair!

Play in hospital with my brother. He misses me.

Play in hospital with my brother. He misses me.

Tonight after her last dose of IVs at 10pm, her PICC line will be removed and she shall come home again. This is her second hospital admission, her second GA and second course of strong IV antibiotics. A not welcome beast has arrived – pseudomonas. A pseudomonas complete with antibiotic resistance and a mucoid layer. Scum. Learning she had pseudomonas was in some ways similar to receiving the initial cystic fibrosis diagnosis. Shock, anger, upset, guilt, hopelessness and powerlessness. One of the few bugs we absolutely did not want her to get. Where were you lurking you ba**ard? Why her?

She fell asleep to Peppa Pig as the anaesthetic took control for her PICC line. She blinked only when the toe pricks were taken for her tobramycin levels. She carries on as normal. Her wee smells (ceftazidime), she’s gone off her food and has been separated from her siblings for two weeks. Yet, she has the energy and self-determination to throw her very expensive nebuliser across the room. She’s refusing this necessary treatment that she will take for the next three months. Play therapists have been deployed to make ‘it fun’. (Tips welcome.) Whilst not ideal I encourage her determined spirit, for it is that spirit that she needs to live with this awful condition.

It’s been hard at times to imagine the future. We are filled with fear. For the moment our hope has been dampened and we are full of worry. Worry is the reason I am awake now when I should be asleep. Worry is the reason I am cleaning every nook and cranny of the house with medical grade sterilisers, even though we cannot eradicate the bug from our home. I cannot wipe every page of each book, every lego brick and cuddly toy. But I feel at least I am doing something. Worry is the reason I follow orphan drug blogs, medical journals, CF research sites avidly. Worry is the reason that I believe her ongoing cough that remains despite these antibiotics means she has not cleared pseudomonas. Worry is the reason I am finding it hard to imagine the future. I am waiting you see. Waiting for the moment I read an article or piece of information that will change her future. A drug, a treatment, a cure even, that her life and future can be returned to her. For Pseudomonas makes her future bleaker. Time is precious. A cure or treatment cannot come fast enough. Around 50% of those with cystic fibrosis die before aged 40.

I was a person who really never did any fundraising before this, didn’t often donate either if I am honest with you. Now, if someone is running, swimming, baking or who knows what else I know the passion they feel for their cause and want to give what I can. Fundraising makes me feel like I am doing something. It removes some of that sense of powerlessness over the condition. It is something for her future AND the future of all of those with cystic fibrosis. For their parents, grandparents, sisters, brothers, cousins, aunts, uncles, friends and family. By giving one person a better life you are affecting all of those people. I have no active fundraising at the moment but we have an ongoing page here. 

But one thing you need to know about lions, they are considered a vulnerable species by the International Union for Conservation of Nature. They are endangered and we must protect them. Like my lioness her future lies in the wider global community of researchers and pharmaceutical companies (like Vertex). But we carry on for now at home. We love her, cherish her and live life ‘as normal’ supported by the excellent care provided by her CF multi-disciplinary team.

I shall leave with this video by OneRepublic.  Please watch and be inspired, thank you for sharing the story of this amazing teen with CF.

P.S. Many thanks to our amazing family and friends who have supported us through the difficult weeks. Every message, meal and hug has been appreciated.

Bedspaces

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So the good news is… no growth from bronchoscopy. Relieved. However, due to her cough persisting despite domestos antibiotics we are in for another 7 days.

So this had me thinking. As a doctor I often look at the patient’s bedspace. It tells you a lot about them and who their friends and family are. It’s your ‘home’ when you are in hospital. Fruit and chocolates may remain uneaten. Cards and photos displayed. Sputum bottles, urine bottles and who knows what else. I took a picture of Minty’s hospital table today. Cards, medicines, high calorie food, toys, drinks and much more.

I’d love to see other photos and put them up for others to see on this blog. If you are a patient, take a pic of your bed table (with appropriate permissions) and send it to me. Tweet it to @morefluids. Let me know your age and a bit about you. Thanks for sharing!

Magical Minty – Early Days of First Admission with Cystic Fibrosis

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.

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Messing about with daddy!

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Trying to escape – Day 2

 

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.

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Waiting for her IVs – Day 3

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After her GA. Washed out

First Hospital Admission

Sudden turn of events. Life has now been refocused on what’s important. Minty has been fighting off a nasty cold for weeks. She became quite unwell yesterday afternoon, worse this morning. I took her to the children’s hospital today, by the sound of her breathing I knew this wasn’t like her usual infections. So tomorrow she goes in for a general anaesthetic, bronchoscopy and long line (central or picc) for 2 weeks IV antibiotics. It’s the day we’ve been trying to avoid. She’s at home now running around like mad after prednisolone and salbutamol. You’d never know she was unwell!

Going to be staying in with her. We are allowed out for home visits etc. Lovely Minty, always smiling.

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Cystic Fibrosis is… Our fundraising video for @cftrust! Please share! @cfaware

This fundraising business is huge fun. Humbling, overwhelming and building great bonds with community, friends and family. If you can’t donate please share our video. Huge thanks to our team member and producer Rachel Cowie. Huge thanks to everyone who participated so far.

Donations welcome – http://www.justgiving.com/mintyskydive Thank You!

What If… The 65 Roses Parent Journey

Image In creating awareness for our fundraising campaign I’ve been researching stories, inspiration and news to up date our supporters with. As a parent of a one year old with cystic fibrosis this has been incredibly hard. I see pictures and stories of bonny, healthy looking babies, people climbing Mount Everest, running marathons with CF. Getting married, travelling the world. Equally I see stories of lung transplants, premature deaths, illness and campaigning for treatments deserved. In the early days of Minty’s diagnosis I could not read or look at anything to do with CF. I was too traumatised and worried for her future. Now I have developed a shell that enables me to read these things. I know other parents with newly diagnosed children do the same. Every now and then the shell cracks and you fill with panic. What if…. what if she needs a lung transplant, what if this time she needs IVs, what if I’m not doing the physio correctly, what if she catches this bug or that bug. I’ve also developed a feeling of hope for the future, a hope that is driving my wish for a cure. I want to see her marry (if she wishes!), achieve all her goals and live a happy and fulfilling life. I am aware that her future is uncertain and we try to live each day with joy and happiness. I am grateful for the support we have received in our fundraising journey. The many people with CF and their families I have met on social media. We are like a big extended family in someways. Thank you. If you are a parent reading this and you have a child just diagnosed, know that there are hundreds of people there to support you. Things will be OK. That’s it for my emotional outburst this morning! Have a good day. May if CF Awareness Month in the US. What if… everything turns out OK. What if… a drug is announced that will help Minty. What if… a cure is found!