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.
MoragJuly 2, 2015 at 2:01 pm (8 years ago)
This is brilliant, well done for putting down your thoughts and feelings. (Not easy) Will be thinking about you all so much over the next few weeks, months etc. You are all so strong, have been through so much already and have come out the other side – hang on to that thought but just know that we are all around if you need something. He is a remarkable 6 year old but also has remarkable parents that care for him so much and a loving brother and sister.Reply
mylittledreamworld1July 2, 2015 at 2:35 pm (8 years ago)
What a long journey – hopefully you are coming toward the end now and your Son will feel much better. You have been through such a lot as a family – what a shame they couldn’t just do an X-ray sooner. Good luck next week xxxReply
emma from over at LIFE AS IT ISJuly 2, 2015 at 8:17 pm (8 years ago)
Jen this is a beautiful account of the horrors you and your little boy are going/have gone through. Your endurance is amazing and he is a super resilient soul. Hang in. Lots of love xxReply
CarolinJuly 2, 2015 at 8:34 pm (8 years ago)
What a little trooper he is, Jen. I’ve got everything crossed for you guys and send you lots of positive thoughts xReply
NikkiJuly 3, 2015 at 7:17 am (8 years ago)
Sending love & hugs from NZ, hope writing is helping you through this journey, I’m sure it will help others too, keep using those instincts, you’re a fab mum with a fabulous little champion! XReply