Preparation: The action or process of preparing or being prepared for use or consideration.
How do you prepare for something you are dreading and that affects the whole family and a wide circle of friends? It is not easy, but it is necessary, for when the event happens, whatever that event may be, preparation is always the key to it going more smoothly. Yes, there may be bumps and bruises and unexpected hideousness along the way, things that are out of your control, but preparing as best you can for all eventualities, in my opinion, can only be a good thing.
Next week my six year old son is going to have a lobectomy and this week I am trying hard to prepare for that, both practically and emotionally, and I thought that if I wrote a blog post about my top tips for preparing for a young one be in hospital, it might help me, as well as maybe someone else.
It’s a scary thought, whatever the operation, and having spent a lot of time with my son in hospital recently, watching him have two general anaesthetics in as many weeks, I am more aware of what is to come this time.
So here are my tips:
Avoid Google – Oh this one is so important. How many times have we all Googled something and wish we hadn’t? Because it always ends up with the worse case scenario EVER!! My advice is to speak to people who’ve been there and done it. I was ever grateful for a close friend who took me aside before my son’s first general anaesthetic and told me that children fight it. That they don’t often fall straight to sleep in a fuzzy, relaxed state. And she was right, he did fight it and it was upsetting, but it wasn’t shocking because I knew it was coming. I have since spoken to friends of friends whose children have had parts of their lungs removed (everyone knows someone right?!) and their stories have been heartening tales of a vile few weeks, but a worthwhile outcome. (The operation is a bit like looking at labour when you’re pregnant for the first time, you forget that you’re going to have a baby/recovery time afterwards and that in itself can be harder than the op.)
Don’t Google, ask the doctors and the surgeon and find people. Ask all the questions you have.
Clothing – For both you and the patient! Hospitals are hot and uncomfortable places and the comfier and looser your clothing the better! They do not need to be designer or expensive, you’ll probably throw them away when you come out or save them for doing the decorating, but they really do need to be comfortable!
Parking – Parking in hospitals is pretty hit and miss. A few now allow you to pay by credit card, and some even let you pay as you are leaving so you don’t have to rush out mid appointment to pop more change in. Either way the trick is to do your research. There is often a cheaper public car park nearby. Keep some change in the car and if possible park in a car park that lets you pay on the way out.
Distraction techniques – Yes, you will need to be strong and find ways of distracting yourself during the operation. Personally I write, be it a blog post, a diary entry that no one will ever read, or my novel. It is hard to focus and I know half of what I write is rubbish, but that’s not the point, in writing I am stopping myself from catastrophising, which is good for no one. Watch Netflix, read a magazine or a book, get an adult colouring in book and treat yourself to some fab felt-tips, crochet, or do your tax return, it doesn’t matter what you choose, but you must make sure whatever you choose is at your disposal. Pack a bag in advance with these things in. Mine is in the study all ready.
Food and nourishment, for you – In that bag of distractions you need something to keep you going. Having a child in theatre is a sure fire way for your body to use up all of its reserves and you are no good to anyone if you are fainting in the waiting room. I pack flapjacks, slow release energy foods and water to keep hydrated.
Necessities – if you are staying in overnight with your child then there are some things you absolutely have to have. Earphones!! They don’t cancel out every noise, but they help and at least make you feel like you are shutting off the outside world for a bit. Face wipes. I know beauticians are now going ‘ah no they are the work of the skin drying devil’ but needs must. They work to clean not just your face as well. Dry shampoo. I did not want to leave my son for a second so showers were rare, dry shampoo saved me on many a day. And when I did have a shower I made sure I used my poshest shower gel and pampered myself! And finally, if like me you have a lovely friend who gives you her Netflix password, and another equally nice friend who allows you to borrow her husband’s noise cancelling headphones, then I suggest you get yourself some of these as well!
Buy a notebook – I have a notebook that I keep with me at all times. And every time a doctor speaks to me or anytime I think of a question in it goes. It is invaluable because your brain will not be in a state to retain certain bits of information, or you may only focus on the worse things you are told, if it is all written down in black and white it can be reassuring and help you make sense of everything is going on.
Friends and family – This goes without saying. You need your best friends on speed dial. People who don’t care if you phone them at 3am and do nothing but sob. People who bring you endless cups of tea and bars of chocolate. And remember they need your support too. I am very fortunate to have the most wonderful family and friends. People who know that, when I say they are suffocating me, to take a step back. And others who, when I isolate myself from them, know how to take a step forward. I’m learning that no matter how people try and help, I need to accept their help, even if it seems misguided at the time. Communicating with everyone s vital. People want to know what is going on. And that includes my other children. The three year old knows his brother is poorly and has to go to the hospital and that he will be looked after by his amazing Nana for a while. And then there’s my fourteen year old. Does she know that the surgeon may have to stop the operation to prevent her brother from bleeding to death? No, but she does know it’s very serious and that for a short while my focus will be elsewhere. And that I love her as much as I always have, even if I am not able to show it right then and there.
There’s not a lot that can make the harsh reality of risky surgery on your child any better, and for all my preparation I know will still be that mum in tears at the hospital next Thursday afternoon. But I also know that I’m ready, we’re all ready, and will have done everything in our power to prepare to support each other through it.
Diagnosis: the identification of the nature of an illness or other problem by examination of the symptoms.
This time next Thursday, I will be sat at home with my fasting six year old, waiting to take him into hospital for a lobectomy. Surgery where he has to have part of his right lung removed because it is permanently collapsed, and what remains is a hot bed for mucus and bacteria.
This diagnosis and operation has been a very long time coming and, whilst I know that it needs to be done urgently before the rest of his lung is affected and he needs a more serious remedy, the preparation for a stay in hospital and surgery like this is not easy.
When my son was born he was a healthy baby weighing in at 8lbs 10oz. I had a normal delivery and we were home the next day. He fed well and after an initial scary weight loss continued to thrive. There were a few strange things that happened, which each of them on their own should not have rung alarm bells, but looking back now maybe were all connected. He failed his newborn hearing test, in itself not unusual, and soon after passed one at the hospital and was given the ok. He had reflux, as many babies do, but vomited blood one day when he was a couple of weeks old. The doctor checked him over and said it was nothing and a one off, which technically it was. Then at four months old he had an anoxic seizure. Again, he was referred to the hospital and checked over and they said it was a one off, which again, it was. (We did buy a breathing alarm for the cot after this, which thankfully never went off.) He had the usual coughs, colds and viruses, but nothing that required hospitalisation or more than one dose of antibiotics.
But he was always full of snot and mucus and had a permanent cough. It was present in the winter, spring and summer and was no worse day or night, but it was there and ever present and when he was two and a half was diagnosed with asthma. I remember telling my mum, right then and there after that diagnosis that he wasn’t asthmatic. That it was something else. But we trusted the doctors and gave him a brown preventative inhaler every day.
And he started to waste away.
Dark circles appeared under his eyes and he began to fade in front of us. He looked skeletal and every photo I have of him at that time I have had to delete because they broke my heart.
Again back to the doctors we went and he was put on protein shakes, as he was malnourished and failing to thrive. This was when the phlegm vomiting started. If he laughed, cried, ran too much or sometimes simply for no reason at all, he would cough until he threw up a yellowy grey pool of mucus. An urgent referral was made to a paediatrician, however the wait was for twelve weeks minimum.
We couldn’t imagine what would’ve happened had we have had to wait those twelve weeks and were so lucky that my husband had private health insurance. I spent over a day on the phone to various different people and ended up getting an appointment for the next week.
At that first appointment my son was checked over, had his chest and heart listened to and the initial thoughts were that maybe he had a cow’s milk protein allergy, reflux and possibly something wrong with his immune system. Bloods were taken, we were given Omeprazole for the reflux and advised to go dairy free, with a follow up appointment made for in a few months.
When we returned a couple of months later, I said that he was better, but not fixed. So we were referred to an ENT specialist who said maybe his tonsils needed to come out, but because he was not 100% convinced this was the problem and I did not want my son to have an unnecessary operation, we decided against it. The ENT doctor gave us some Flixonase for allergic rhinitis and off we went again, now with two different sorts of medication.
A few months later we were back and yes, again I said things were ok, the early morning marathons of coughing and retching were less frequent, but still I didn’t think we’d cracked it. So this time we were sent away with Montelukast to help my son’s lungs as the cough and phlegm vomiting were ever present.
I remember during this long period of time, when I was back and forth to the paediatrician, how frustrated my husband and I were. The paediatrician always said that with children they work very differently to how they do with adults in that they don’t do any investigative tests and work empirically. To us it seemed like they were just throwing medicines at us and I wondered if we’d still be going there in ten years time with our son now on a hundred different types of medication.
But what choice did we have other than to trust them and go with it? He was improving after all, and with each new medication we hoped we’d finally cracked it and solved the puzzle.
We returned again, a year ago, and this time we were given Certirizine, which is an anti-histamine.
The phlegm vomiting and cough all but disappeared and we started to reintroduce some dairy. He began to put on weight and had more energy than he’d had in a long time. The combination of the four different types of medication seemed to be working.
However in December, the paediatrician noticed that he had some clubbing of his fingernails, a sign of lung disease, and ordered an immediate chest x-ray, which showed a collapse of the lower lobe of his right lung.
Our son needed a four-week course of antibiotics in an attempt to re-inflate the lung. It didn’t work.
We were then referred to a respiratory paediatrician who told us some hard facts.
This could be congenital and he was born with a diseased lung. Or it could’ve happened from him having a nasty virus that damaged the lung. He could’ve aspirated something, which had caused the collapse. Or he may have a genetic condition called PCD, which had led to this happening.
There was so much to take in and the advice was that he would need antibiotics for the foreseeable future before having to undergo a bronchoscopy to look into his lung, followed by a two-week stay, on IV antibiotics, in hospital with vigorous physiotherapy to try and re-inflate it.
We spent three long weeks in the Children’s Hospital and he had IV antibiotics, two bronchoscopies and intensive physiotherapy all to no avail and so, at the next outpatients appointment, were sent for an immediate CT scan, which showed permanent damage to the lower lobe of the lung. It was never going to inflate fully again and needed to come out before it infected the rest of his otherwise healthy lung.
The operation is risky because the lung has been collapsed for so long and I’m dreading it, but that is where we are. He has on-going tests to try and determine the cause of the collapse, which we still don’t definitively know, however several results do point towards the genetic PCD condition, which has implications for his younger brother, who too coughs constantly.
He is a wonderful six-year old who has, remarkably, taken all of this in his stride. He hates cannulas (or ‘nasties’ as he calls them) but knows they need to be done, and if you ask him how he is he will tell you, in a very matter of fact way, that he has to have some of his lung chopped out, and that afterwards he will feel better and get all the presents in the world. Children are so resilient and are masters at not worrying about something unless they have to.
I could learn a lot from him.
Collapse: verb (used without object) to fall or cave in: crumble suddenly: to sink into extreme weakness: (of lungs) to come into an airless state.
There’s a lot of time to think when you are in hospital for two weeks. Seconds, minutes and hours to get lost in your own imagination…or frustrations…or neuroses.
You see things differently when you have a child who is unwell, at least I have. I don’t care about my weight, or money, or housework, or the little things. So what if someone is rude to me for no reason – it’s their problem and a reflection of how their day is going not mine. Who cares if I’m a bit late, or forget to reply to a text message the same day – true friends understand.
These two weeks have taught me many things.
I already knew that I am very much a person who is both a people pleaser – desperate to be liked – and someone who can be quite intolerant of people. In many respects the latter has intensified during our time in here. Some people really do stress about the most ridiculous of things – which I guess are relevant to them, but still. And yes, that may sound harsh, but I…don’t…care.
I’ve learnt how amazing nurses, physios, doctors and anaesthetists are. They are seriously awesome. They work so bloody hard and go above and beyond the call of duty on a daily basis. There are so many things that happen in children’s hospitals that have blown me away. Right now, my 5yo is sat with Wilf, a bubbly storyteller who is reading him a monster book that he is allowed to keep thanks to a wonderful charity called Readwell. My son isn’t usually a talker, but has opened up and is chatting like he’s known Wilf for years. The people who work here know children, and know how to make them feel safe and important. And of course they are wonderful at supporting us parents too.
I’ve also learnt about the never-ending resilience of lovely little people. They simply go with how they are feeling at that moment in time and never, ever wallow in self-pity. They get on with it, day after day. No matter what is taken out of them, or injected into them. They may complain at the time, but when it’s done it’s as though it didn’t happen in the first place and their smiles are soon back in place. (Disclaimer: bribery and corruption may, of course, help to inject them with a bit of bravery!)
And of course, although my son is seriously poorly with a collapsed lung that is proving to be very stubborn and reluctant to inflate, and although he is puzzling the doctors as to why this has happened, even though he has a list as long as my arm of other symptoms, he is in himself doing a very good job of appearing to be a perfectly healthy young boy. There are many reasons why a child may be unwell, and varying degrees of how this affects them, I am talking here about my experience with my son.
I knew sleep would be rare, but I’ve learnt that I can survive on less slumber than I thought. I’ve had a hunger that has in no way been satisfied, but have learnt to listen to my body and eat whatever I’ve craved – my figure will still be there under the blubber and waiting to return when I stop stuffing my face through comfort eating.
I didn’t know I could spend so long in one room (my son has been in isolation) and have dealt with my anxieties and stresses in ways I hadn’t considered before. (You all need Omvana in your life!)
I’ve learnt that one of the most painful sounds is that of a sick, young baby crying.
I’ve learnt that noise cancelling earphones and Netflix have been the best way to spend the evenings and distract me from the many noises a hospital emits.
The generosity and love from others has been overwhelming. I don’t like being pitied, and have never been good at asking for help, but I have learnt that everyone wants to help and even if you don’t let them, they often do so anyway. I’ve also learnt that everyone helps in their own individual way – ways as individual as the people offering the help are themselves – and to gratefully accept it all.
I still need to learn to lock myself away from the outside world a little less, but must admit I have found it hard repeating my son’s current condition over and over again to so many different people. I love that they care and I am so humbled by the amount of people whoare thinking about him and need to know how he is, but at times it’s been too hard to talk to them all. What do people expect me to say when they ask how I am? How the hell do they think I am? I’m drained. I’m broken. I’m in a constant sleep deprived, anxiety ridden state. We’ve been here for two weeks. Two intense weeks of general anaesthetics, bronchoscopies, ciliary brushings, blood tests, X-rays, mucus tests, biopsies, physio, antibiotics, nebulisers, tubes up noses and into stomachs and more. There have been no diagnoses, only things we now know it’s not, and the lung is still partially collapsed. Harsh as it sounds it’s been easier to ignore people who ask me how I am than to tell them the truth and for that I am sorry. I’ve cried, I’ve had panic attacks, I’ve shouted, but I’ve done it. And I couldn’t have done it without every single one of those people who care having been behind me all the way.
I’ve learnt how my son is so very much loved. The ‘get well soon’ cards and gifts from his friends have filled his hospital room, meaning he has never been short of things to do. Visits and video messages have put that infectious grin back on his face and given him renewed energy and strength.
I’ve learnt how mature a thirteen year old can be. My daughter has been such an amazing support and has quietly got on and organised herself whilst we’ve been to and fro from the hospital. My two year old has also surprised with me with how aware he is that something isn’t right. He’s needed a lot more cuddles during the last couple of weeks when I have seen him. Mind you, so have I. I miss being at home as a complete family.
I knew my mum was wonderful and amazing and supportive and she has done nothing but cement that knowledge. She is the best.
I knew how bloody brilliant my husband was. He’s stepped in during the night shifts when it all got too much for me and I needed to go home. He’s listened to me rant. He’s wiped away my tears. And he’s not complained (much!) and was always there when we needed him. He has been such a support whilst also dealing with his own emotions. Not to mention the fact that he had to cancel his yearly snowboarding holiday. That did not go down well!
I’ve learnt that some illnesses are hard to diagnose and even though you want your children to be fixed, it’s not always straightforward. Trusting doctors can take a lot of effort at times, amazing though they usually are.
I’ve learnt that I can cope with more than I realised.
And finally…I knew that my five year-old son was awesome…but he has blown me away these last two weeks.
Fingers crossed we get some answers soon – I’m still learning to be patient.