Mayhem was born in late October 2014, eleven days late, at home after a long nine hours of contractions. I was on my second push of three as the Midwives arrived, Mayhem had already popped his head out and true to his inquisitive nature, he had a good look around before he finally arrived into the world.
He always had a wheeze on and off since he was born. It was something the came and went so I didn’t really notice it. At the time I was too consumed with breastfeeding, tongue ties and managing to juggle two in nappies (cloth) and all the trails and tribulations that a newborn and a 20 month old toddler brings. Yes, I’ll admit it, too knackered to really notice as there was so much other stuff going on. Two boys under two is enough to keep anyone busy.
Mayhem was such a cheerful, happy soul and when he wasn’t feeding (which was pretty much constant), he was smiling, so I never really thought he was ill. What I couldn’t ignore was the constant feeding and the 1-2 hour screaming fits during the night. The feeding, I put entirely down to the tongue tie, I had been through this before with 20 month old Chaos. It nearly broke me, the first time round, but more on this in a separate blog all about the terrible Tongue-Tie, Ankyloglossia. The bouts of screaming really got to me though, he seemed to always need to burp but not be able to, somehow his burps seemed to be stuck and he was in pain. I couldn’t ignore his pain. By 6 weeks old and more than several episodes of night screaming I had pushed for the doctor to give Mayhem a course of Omeprazole for reflux and an appointment with a paediatrician.
When we first saw the paediatrician, he asked what we wanted to get out of the appointment with him. I said I just wanted Mayhem to be able to burp when he needed to and to stop being in pain, that there was something wrong and he needed fixing. The Omeprazole did not work, he went on to be prescribed Infant Gaviscon, Ranitidine, super strong antibiotics, nebulisers, steroids, inhalers and Montelukast and we saw ours and numerous other paediatricians, numerous times.
By the time that Mayhem was 10 months old, had been admitted to hospital overnight on 3 occasions, A&E over 7 times and countless trips to our local doctors. The diagnosis…he started with Croup, then Bronchiolitis and also possibly Asthma. When we were in hospital overnight they found that his oxygen saturation levels were
low when he was sleeping and he needed oxygen. The following day though after
steroids and nebulisers his breathing seemed better. Oh yes, the breathing, his wheeze became much more apparent and he also seemed to struggle for breath at times with recession (sucking in under the ribs). I absolutely hated giving him soooooo much medication but I knew that something was wrong and trusted the doctors to fix it.
During the day he was his happy self, all the doctors who saw him said, ‘he can’t possibly be ill, he looks so happy and healthy’ (yeah, thanks, just find out what the problem is and fix it!). By night the problems with his ‘stuck burps’ overtook, he struggled. Not all the time, not every night, but enough, to be more and more worrying.
In mid July 2015 we took a holiday to see Paul’s mum and step-dad in Spain. A glorious 3 weeks of sunshine. Rest, relaxation and Grandma and Grandad on standby to distract and play with Chaos and Mayhem. Bliss!
Oh, apart from the fact that Grandma was too worried to even pick Mayhem up as he was breathing so heavily, not that Mayhem wanted to be out of mine or Paul’s arms for more than one minute (Mayhem had always been a velcro-baby, constantly attached to me, feeding all of the time, carried everywhere and hated to be put down). The day we landed back in the UK we went straight to A&E again about his breathing. The A&E doctor administered a new treatment, adrenaline, and again the same old lines about bronchiolitis were again reiterated. What he did say that resonated was, ‘there was no way he would let his child go home in that condition’. We were admitted to the ward, briefly seen by a student doctor and left for 2 hours in a room. Another course of inhailers and we were off.
We’d planned to meet friends camping up in North wales the next day. A long drive up North, this was the first time Mayhem had ever slept in the car seat. Ever. He usually screamed and screamed and screamed. He only ever felL to sleep on the boob, apart from a couple of times in Spain when he fell asleep being carried by Daddy. But in the car…never…I knew he was ill, and getting progressively worse. After 3 nights camping we went further up North to Lancashire to visit my mum. The following day I nipped into town with Mayhem, planning to do some shopping but first dropped into the NHS walk in centre to get his breathing checked out.
Dr Adam was a lovely man, took one look at Mayhem and said that I should’ve called an ambulance, and called one for us. His breathing was twice the rate it should be, his heart was working harder than it should be. The blues and twos were on and we were in the hospital in a few minutes. Cue me blubbing on the phone to hubbie to get over here asap, a screaming 10 month old Mayhem and a myriad of A&E doctors fusing around trying to get a line in. Apparently he was dehydrated and they tried to get a line in. 10 minutes later a couple of Paediatricians came down from the children’s ward and the panic was called off. No line required, just Bronchiolitis and an admission to the children’s ward.
The Paediatrician who saw me that day in A&E said, ‘not to worry, Bronchiolitis comes and goes with some children, you’ll be sent home sooner than you know it’. We were told the same thing by two more doctors during our hospital stay but all credit to Royal Blackburn Hospital, they kept us in. Their policy, unlike in Kent, was that a child had to be 24 hours without oxygen before they were able to go home. Mayhem needed oxygen at night, his sats went as low as 82. I broke the rules, co-slept with him and held the oxygen mask next to him in bed as he slept.
Day 5, it was the weekend and we finally met an amazing Doctor, Dr Nicola Horton, a consultant doctor, a real consultant, not a student, as we had mainly been seeing all week. I told her the history, our little story of multiple admissions and explained, ‘there’s something wrong, he can’t keep being ill like this, there is something definitely wrong’, she said ‘I agree, and I’m going to find out what’s wrong with him’. You might think at this point we felt a sigh of relief, that we could relax and leave it all in her capable hands, but unfortunately we were already jaded and disillusioned by our prior experiences and we thought, yeah…right! However, Dr Horton did as she said and organised blood tests, extra blood tests, chest x-rays and repeat chest x-rays.
I forgot to mention that Mayhem had previously had a chest x-ray on our second or third admission to hospital in Kent. The doctor read the results eating cake (as my eagle-eyed hubbie noticed). This consultant doctor told us that this initial x-ray showed that Mayhem had a large Thymus gland, which wasn’t a problem, and that he must have moved whilst having the x-ray taken as there was also a shadow. I said, ‘no way had he moved as I was holding him at the time’, the doctor quickly dismissed me and said even the slightest movement could result in this shadow.
Dr Horton was also the first Doctor to examine Morley and feel his abdomen, when she did she thought she had felt the liver’s edge. BOOM! We knew what this meant, that he could have a heart problem, as my nephew, my brothers eldest child, had a serious congenital heart disease, they had nearly lost him a couple of times in his four years of hospital stays and multiple operations. She also felt the X-ray could show am enlarged heart, again a symptom of a heart problem.