So a few people who follow my blog have asked about Ruby and why she has hospital appointments in Southampton, apologies for those of you who do know, but there is a little update!
Ruby was born by elective c- section in March 2007 weighing in at a whopping 10lbs 11ozs, after delivery she was not breathing as she should and was whisked away, I can remember lying in the theatre begging for them to tell me she was ok, and them saying she needed a bit of help to breath but would be fine in a few hours, I can still recall the empty feeling of not being able to hold her, and ringing my Mum to say I’d had her but hadn’t been able to cuddle her or have any skin on skin contact, some might say I had missed out on the initial bonding with my baby girl, but for those of you who know Ruby you know she is the most loving and tactile girl you could meet, never far from my side!
That evening Ruby was back with me, and my second journey through motherhood began, I remember looking at her thinking how could I be this lucky a second time, this beautiful bundle of joy, little did I know what would lie ahead of us.
Ruby wasn’t a particularly easy baby, she cried a lot, she cried night and day, there were smiley happy times don’t get me wrong, but it would happen that the days would become as long as the nights, and I knew there was something not right with her, call it mothers intuition, she had right from birth this horrible crackling sound inside her chest , where sometimes her voice resembled Darth Vaders voice , feeding would be hard as she would feed then be sick, with a mucus coming back with it, I mentioned it to my health visitor who agreed that something seemed amiss, so I booked her in with my Doctor who was great and said to try some antiobiotics, now this happened several times, chest infections again and again each time the medicine would work, then it would all reoccurr, so my GP said about seeing a Paediatrician in our local hospital, which we did -intially they thought she had Cystic Fibrosis (waiting for the results were the longest hours of my life) once they knew it wasn’t this they were quite happy and as much as they checked her over and looked at her, would say she was fine, they would just say we will see her again in 6 months. We had endless trips to A and E for steriods or a nebuliser – I cannot tell you the nights I’d be on the road in the early hours to get her some help because she couldn’t breath properly.
The first 16 months of her life were really hard, I felt like I was failing her, like no one, bar family and friends would listen to me, I remember sitting with my health visitor saying that I couldn’t cope, and that I was sure something wasn’t right with her, to which she replied that she thought I had post natal depression and that Ruby was actually ok, she said I had to think that Ruby had been checked by professionals and they hadn’t found anything, but come on as parents we know in our gut when there is something not right, I probably wouldn’t of admitted at the time I had PND but I was unwell with it (in denial), but that’s a story for another time lol.
I stuck to my guns and went back to my incredibly supportive GP, I cried and cried, telling her that as gorgeous as Ruby was, there was something wrong, even though she was reaching all her milestones, I knew she was struggling, I pleaded with her to help me, and she suggested that we try another hospital, another consultant, together we decided on Poole Hospital, Dorset as Dr Gary Connett is a specialist respiratory paediatrician who visited there once a week from Southampton General Hospital.
This for us a family was a massive turning point, I remember our first visit there as clear as day – I can relive the day moment by moment, we turned up and Ruby was weighed and measured, they then took her sats – I knew something was wrong when the Nurse left the room and got a Doctor who then asked if they could take Ruby as her sats were really low and she would need some extra help, she was given a nebuliser, after this we met Dr Gary Connett who said that he thought Ruby really was quite unwell, he wasn’t sure why or what was causing her to be so poorly but he could identify a few things just from how her chest was rising and falling, her skin, her nails and her past history that I previously had explained, no one ever wants to hear that their child is unwell especially when you don’t know what it is that is wrong, but just 5 days later, I watched Ruby be taken off to theatre I know I’ve had my fair share of crap but that moment was probably one of hardest, my heart was breaking, it felt like she was in surgery forever , and I felt such guilt (Mum guilt hits again) that she had to go through that and that I wasn’t with her.
The thing is even with her ailments and what she went through, as she got older she would be so happy, smiley and trusting, and everyone loved her, she used to bring laughter to most situations and to be honest she still does.
It took some weeks for the bronchial lavage cell counts to come back, I was at work when Dr Connett rang and I knew he would have some answers for me, I was so anxious as he explained that the bronchial lavage washes had grown a group of Group A Streptococcus, Some strains of group A streptococci (GAS) cause severe infection. Severe infections are usually invasive, meaning that the bacteria has entered parts of the body where bacteria are not usually found, such as the blood, lungs, deep muscle or fat tissue, in Ruby’s case her lungs, he also said that he had a diagnosis – Middle Lobe Syndrome, whereby recurrent infection can occurr in the right middle lobe, which has poor collateral ventilation and which is prone to recurrent aspiration and infection, this would explain why we had consistent improvements after antibiotics, but never sunstained due to only being short term doses, also this had caused a cough variant Asthma.
Finally an answer, an answer that rocked us all, but meant we could help her and finally start treatment, and ensure she had a better quality of life.
He also informed us that severe GAS infections may lead to shock, multisystem organ failure, and death. (Early recognition and treatment are critical) So her treatment began immediately a continuous antibiotic, Bubble PEP Physiotherapy ( this is process to help remove a build up of phlegm/secretions from the lungs) she loves this – blowing through a tube to create a mound of bubbles, huffing and coughing! We also started two inhalers Flixotide and Salbutamol.
So this all started back in 2009, and here we are now just last week having the six monthly check up in Southampton, Ruby still has the same wonderful consultant, Dr Connett, who treats her with so much care and respect, she thinks very highly of him and each visit they catch up like old friends, He always wants to hear her latest footballing achievements!
Sadly this last visit wasn’t one of her best, within 15 mins of being there she was on a nebuliser, as her lung function was not as it should be, Ruby never moans, she carries on with life with such enthusiasm and as I mentioned before humour – that you can’t always tell when she isn’t firing on all cyclinders, however she has been struggling a bit the past few weeks, more tired, more out of breath so it was good that she had the visit to be observed and see what we needed to do next, not every visit is like that, most show her moving forward but every so often we take a step backwards , and I try not to let it worry me (who am I kidding) because I know she is strong – a warrior like her mother lol , for the next few months we have to up her meds, give more inhaler before sport, and when the cold winter weather hits, get back on the antibiotics, if you met Ruby you would be none the wiser to what is going on in the inside, she seems to have endless amounts of energy probably from the copious amounts she eats!!
It’s not been easy for her growing up and yes she will still now scare us half to death needing the odd ambulance ride to A and E but you know what she will still be smiling at the end of it all, she never lets it get in her way of enjoying life, she is brave and beautiful with a twinkle in her eye, and Kevin and I couldn’t be more proud!
Our Children take us to places in our hearts we didn’t know existed!
Have a happy and healthy week.