Preparing for a Bronchoscopy

Gutted to even write that title but on Thursday this week Harriet will have her first bronchoscopy. I feel like we have narrowly avoided this procedure and hospital admissions so many times, in a way I should be glad she’s got to nineteen months without any huge interventions. The reason behind the bronchoscopy is pretty much due to back to back viruses. Harriet seems to catch one every few weeks. She has had a lingering cough that has peaked and troughed for months now and has never fully gone away, until two weeks ago. She had ONE week of being well and completely cough free and we really felt that this was it and she had turned a corner. Typically her older sister developed her first cough and cold in months and you can guess the rest. I could have cried when I went to get Harriet out of her cot one morning to find her absolutely loaded with cold.


A week on from this it is showing no signs of abating either. The brochoscopy was going to be cancelled if she stayed well which now is not going to happen. Due to the scheduled procedure she cannot be on any extra antibiotics so she is just riding this cough and cold out until Thursday. The harsh reality of having a baby with cystic fibrosis is kicking in right now. Reading through the paperwork for the procedure brought back all those awful memories of when she was a newborn and having to hand her over in the theatre waiting room (Harriet was born with meconium ileus.) Not having a clue what was going on, why my precious new baby was having to have a major operation. This time, as she is a little older, one of us will be able to stay with her until she is asleep. Who that will be, me or my husband, I don’t know. I did feel a little ashamed of myself when she had operations as a baby for sitting out of the room as I couldn’t handle watching what they were doing to her. I had a moment where I gave myself a firm talking to and vowed would never be such a wimp again and would be by her side, holding her hand through all the horrible things she has to go through.


Our day will start early as Harriet isn’t allowed anything to eat past seven am so I’m going to load her up as much as possible! Thankfully she is a pretty chilled character and I’m not expecting this side of things to cause any problems. She is only allowed water after that up until eleven am then nothing. We have to take her to hospital for midday to prepare for the procedure at around one thirty. The list runs in age order, youngest to oldest so she should be first, fingers crossed. The bronchoscopy itself only takes ten minutes. A tube will be inserted through her nose to allow the doctors from our CF team to look at the back of her throat and her lungs. Depending on what they find they will decide then and there whether she needs to be admitted to hospital for seven, ten or fourteen days for a course of intravenous antibiotics. We are to prepare for at least an overnight stay and pack our bags.


Naturally we are hoping for the best possible outcome in that they find nothing sinister and are able to give her a wash out and send her home. Despite that being the preferred outcome it wouldn’t give us any answers as to why she has picked up every single virus going and has coughed for so much of this year already. So we find ourselves caught between a rock and a hard place. Ultimately Harriet’s health is top priority so this has to be done to keep her lungs in the best shape possible no matter how difficult it may be. Not only will the procedure be distressing for her but the impact it has on our family life won’t be nice either. Harriet adores her older sister and cries for her whenever they are apart, even if they’re just in different rooms at home! To separate them for potentially two weeks is just devastating. Of course they will be allowed to visit but it’s just not the same is it?


I am trying to find positives, I really am. It is for the best but the negatives are overtaking at the minute. Watching your baby be starved, undergo a general anaesthetic then potentially have a line fitted in her arm for IV access for up to two weeks is never going to be easy to deal with. To be away from home, from family and be confined to a small room in hospital, again, not easy. The fact that everything is up in the air at the minute is hard to bear too. I like to be organised and make plans. CF seems to be good at messing with them. We have, however, planned all of our days leading up to Thursday with fun stuff to keep us busy! We will certainly make the most of these last few days as a family altogether.


Depending on what happens I am unsure how much or how little I will be able to update so please keep Harriet in your thoughts and prayers this week. Wish us luck!

To read more about cystic fibrosis and ways in which you could help click here.

Harriet’s Eighteen Month Update

The last month didn’t get off to the best start when I went all Edward Scissorhands on our little Harriet. I can’t even explain how or why, she was just there, sat still with her fringe right in her eyes so one little snip turned into something awful! Her fringe was going down into a point so logic told me I could just cut the pointed bit off…turns out I was very wrong! One snip lead to more, then more, the end result  being of a set of pictures which I am sure will come back to embarrass her at some point in her life! Poor bairn, thank goodness for hair accessories!


Health wise we were still battling with a lingering cough. One day it seemed better then the next day it was back? I really don’t understand! Again we reached a point where things escalated and we had three nights of constant coughing and no sleep. I gave up trying and we sat up watching Frozen most nights over and over just to keep her comfortable and happy. I can’t imagine what it must be like to have only a minute or so between coughs and coughing so hard you can’t sleep. So upsetting. Harriet had been on two extra courses of antibiotics so now after this latest escalation she started on Azithromycin. A few days into this I received a call from one of the nurses to tell me Harriet had grown something on her latest cough swab. Before the nurse had the chance to even speak I was in full on panic mode, expecting her to say Pseudomonas but thankfully it wasn’t! She has grown haemophilus influenzae again so needed to change antibiotics to the one that is known to kill this particular bug, fingers crossed it has!


Because Harriet’s cough had lingered for so long I was asked to take her up to the hospital to be seen by one of the doctors outside of clinic. On examination they weren’t too worried about her but her weight had dropped by 400g. I know that doesn’t sound a lot but it really gets to me. I guess I see it as a bit of a fail on my part, not trying to fatten her up enough! The upshot of the appointment was that if her cough didn’t completely clear soon then further investigations would be needed; a bronchoscopy. Persistent cough aside, she is and always remains in good spirits. She copes with everything so much better than I do!


On a lighter note, Harriet has enjoyed her usual fun packed social life! She enjoyed her cousins second birthday party, Grandad’s surprise 60th, Nancy’s dancing awards night and the fundraiser at our house just to name a few! Life still continues despite bloody CF and we won’t let it stop her doing what she wants to! At the end of the month we headed off to Scarborough for a long weekend on the coast. I love getting her to the seaside (salty air is meant to be good for her) and we are so lucky to live right next to some of the best beaches in the UK. On arrival, we couldn’t have been any closer as our caravan was perched on the cliffs! Not going to lie, the first night was a killer, it was so cold. Naturally, I then began to worry about Harriet, how imperative it was for her to get well soon and this could set us back. Thankfully the sun finally decided to come out and we ended up having a fantastic time.


Finally, she is still not walking! She can stand unaided, walk along the furniture, manoeuvre herself well on any ride on and climb a full flight of stairs! Basically she will do anything but walk. She has definitely made progress though as she will walk with someone holding her hand now, whereas before she would just scream at us as if it say I am not doing that! It’s now got to the point where we all can’t wait for her to just do it but from her point of view she can get about at some speed on her bottom so why bother?!

Next month I want to say that Harriet is cough free, didn’t have to have a bronchoscopy and is walking. We live always in hope!

If you would like to read more about Cystic Fibrosis and ways in which you could help click here.

Five Positives for Newborns with Cystic Fibrosis

At the time of your babies diagnosis you may think there are no postives about having a child with cystic fibrosis, granted there aren’t many but it really isn’t all as doom and gloom as Google will make out. Trust me, I went there, despite being told not to! One of the main reasons I started this blog was to show that happy family life does go on despite thinking your whole world has collapsed initially. I take great comfort in the following and hope it helps someone out there too.

1. Early diagnosis: Most babies are now diagnosed via the routine heel prick test within the first few weeks of life. However, this wasn’t the case for us. Our daughter was born with meconium ileus, one of the first signs of CF, this is much rarer. Early diagnosis means starting treatments earlier and therefore, preventing any damage to our little ones lungs. Screening through the heel prick test only started in 2007 so babies born before then often went a lot longer without CF being identified. Hopefully starting treatments so early will raise life expectancy.

2. Improved Treatments: I read the other day that cystic fibrosis was only discovered in the 1930’s! One of the first things to be developed was pancreatic enzymes to help sufferers digest their food properly, known today as Creon which is taken with every meal that has fat in it. Without this, patients would be severely malnourished and poorly. Advancing forms of physiotherapy to help with airway clearance mean patients are able to loosen the thick mucus in their lungs. Percussion, bubble pep, acapella and vests have all been introduced and show great benefits alongside regular exercise which is so very important too. The introduction of DNase in the late nineties was heralded as a big breakthrough as it thins and loosens the thick mucus via a nebuliser.

3. Increased life expectancy: Cystic Fibrosis was once seen as a childhood disease. So much so that adults with CF pay for their prescriptions as nobody used to survive. Life expectancy has risen so much over the last few years and can only continue to follow this trend.

4. The Cystic Fibrosis Trust: Parents of a newly diagnosed child are often pointed in the direction of the U.K.’s main charity. They are so much more than just a fundraising organisation. The help and support available to parents and to those with CF is immeasurable. They are at the forefront of pioneering technology and work so hard to fight for a life unlimited by CF for all.

5. The Future: For the first time ever, drugs are now on the market that tackle the root cause of the disease. The company who manufacture these drugs, Vertex, are now working on even better versions of these pills. Many other pharmaceutical companies are also following suit and have similar, potentially better drugs coming than the current market leader. Gene therapy is really progressing at the moment too with The GTC in the UK now proving that it can be done but there is still important work to do to perfect it.

I don’t think a day goes by when I don’t read about another company working on a potentially game changing medicine or treatment or, dare I say it, cure! I feel so lucky that my daughter has been born at this time of such great medical advancement and feel very positive about her future.

 

 

Fundraising Update

Last week I hosted my first fundraiser, ‘A Cuppa for CF.’ Even before the main event I was thankful to receive such great support in terms of donations. Big thanks have to go to Greggs who made a large donation of doughnuts. Good Brews who donated a massive rainbow cake, which was very well received! Cupcake and Co who made bespoke cupcakes in The CF Trust colours of yellow and black. My friends, family and neighbours who also supplied gorgeous baked goods. Cupcake and Co deserve a special thanks as they were truly a random act of kindness. Following a plea for help in a local parenting network, Joanne said she would donate and support my event. The company have no links to cystic fibrosis which makes it even nicer. So you all know where to go now for all your cupcake needs in the future! They also have a stall at the Harton Quays Craft Fairs so do pay their stall a visit!


Despite my jitters, the event was extremely well attended so apologies if I didn’t have the time to chat to everyone. With the help of my sister and a marvellous urn haha we managed to get teas and coffees to everyone while my auntie organised a raffle and a kind friend entertained little ones with some facepainting (Sheridan Facepainting on Facebook.) The grand total for the afternoon came in at £450! So overwhelmed and grateful for such wonderful support. Even those who couldn’t make it and still sent donations, thank you!


Another act of kindness happened this week when an old school friend also offered to help with our fundraising. Simon, is attempting to run a half marathon in under one hour and thirty minutes! Something he has never done before so this will be a true test of endurance. Simon has followed Harriet’s progress through these updates and asked if he could be of any help. Lovely stuff. This is going to be a real challenge so please click here to sponsor and support.

As always we continue to collect stamps for The Stuart Gordon Fund. Used stamps are converted into cash and fund a single research project which is showing very promising results in terms of addressing the root cause of CF. We had a huge donation recently from a local church. My dedicated auntie and uncle spent weeks trimming and posting them! Huge thank you to all involved.

My artist auntie will continue to sell her artwork at The Harton Quays Craft Fairs on the first Sunday of each month with proceeds going to The Stuart Gordon Fund too. Please pop along and show your support.


If anyone has any ideas on what we can do next or if you would like to help in any way please get in touch. My baby and so many others desperately need a cure. If you would like to read more about cystic fibrosis click here.

 

Free Children’s Life Saving Skills Class

Last week saw another strike by our Junior Doctors and guess what? They weren’t all just sat at home with a cup of tea in front of daytime television! Up and down the country a series of children’s life saving courses were organised, free of charge, ran by junior doctors who are qualified as paediatric life support providers. The course was aimed at anyone who wished to learn basic skills that could save a child’s life and being a mother of two small children, this was definitely something I wanted to be involved in!


A friend of mine managed to secure a spot for three of us in one of the hour long sessions, places were in high demand! Thankfully, children were also welcome at the course so my eighteen month old was able to tag along too. On arrival it was lovely to see that there was a whole area set up at one side of the room with mats and toys to keep little ones occupied while mums, dads, grandparents etc all set about to learn the important stuff!


We were given handouts with clear, step by step instructions on paediatric basic life support and one of the lovely doctors gave a demonstration of what we needed to do. Everyone was then split into small groups with one doctor to help us. It was a real privilege to have a doctor work with us on a one-to-one basis, taking us through each stage of child resuscitation which, of course, we all hope we never have to use. After completing all the training for babies we then moved on to what to do with a toddler or older child. There isn’t much difference in the steps apart from an older child’s head needs to be tilted further back, we were told to imagine they are ‘smelling the morning air,’ then follow the prompts on the sheet.


After we had all practised on the dummy baby and toddler we were also shown what to do in the instance of a child choking. I have found myself in this situation a few years ago when my now four year old was just turned one. She had managed to get her hands on a pound coin, pop it into her mouth and next thing she’s choking. It all happened so quickly. I hadn’t ever learned any life saving skills at this point so how I knew what to do I don’t quite know! I whacked her once on the back, that was all it took and the coin came back up out of her mouth. A parents worst nightmare. I don’t think either of us calmed down for some time afterwards! Turns out what I had done was incorrect, despite it working, so I was very glad to learn the correct steps to save a choking child. I should have placed my little girl over my knee and used the heel of my hand to deliver hard blows to the centre of the back. I had hit her in the correct spot but she had been standing and I had used more of a karate chop method (?!)


We all learned so much during our time spent with the junior doctors. They are very keen to be doing something productive, even when they had been out on the streets protesting they were still stopping people asking if they wanted to learn basic life saving skills! Brilliant! They also said they will run more courses in the future so do look out for them and book yourself a place. Ours was advertised via Facebook, so keep your eyes peeled and get in quick!

If you want to read more about the junior doctors strikes and how you can support them click one of the following:

https://you.38degrees.org.uk/petitions/petition-against-junior-doctor-wage-cuts-in-england
https://www.change.org/p/british-medical-association-support-a-strike-for-junior-doctors