I've started this blog to give everyone the full story with Ziggy, exactly how we found out, exactly what his diagnosis is and his prognosis/where we go from here. This will no doubt drag up some unfound memories and feelings from that awful time but I believe writing it down will be a great coping mechanism to help me get through the rest of our journey. Its going to be a long one.
Lets take you right back to the beginning. Ziggy was born in November 2017 following a normal pregnancy and birth. He was only 3 days overdue and everything went smoothly apart from breast feeding. I thought it would just be natural that we would both know what to do but it was so painful! I explained this to the midwifes and the health visitors but I didn't get any support and therefore after a week of incorrect and painful latches id had enough and gave him a bottle. This was the best decision for both of us, he was tongue tied and my nipples were so cracked and painful I'd had enough. I men who the hell cares really? I will continue to preach FED is BEST. He's NG fed now and that definitely isn't 'Natural' (as they say). Anyway we took our gorgeous little newborn home and went about our lives like a 'normal' little family. Going on Holidays and swimming lesson, family gatherings and spending time with friends.
Fast forward 3 months. Ziggy first got ill. It was horrific! we was so young and vulnerable and he was really struggling. I took him to the GP as we all do as our first port of call. I booked an emergency appointment and therefore couldn't pick the doctors which I wasn't completely comfortable with but he needed to be seen quickly. His symptoms were wheezing, cough, cold, and work of breathing. The appointment was very rushed as are all these 5 minute Emergency appointments but I trusted the doctor had given me the correct information. I mean i'm not a doctor, who am I to say she is wrong? If only my future self could have warned me and told me what I know now. The doctor was very lovely, she checked him over and told me he probably has a touch of bronchiolitis. She explained that this is very common is babies under one and we should just go home and keep him hydrated, it was going to get worse before it got better and could last 2-4 weeks. She also told us that we should only bring him back if he started refusing his bottles or was being very sick as he may get dehydrated. Not once did she check his oxygen levels. So we did what she told us to do, we took him home and it took all of those 4 weeks for him to improve.
At 5 months old Ziggy was presenting the same symptoms (baring in mind it hadn't been long since the first illness had gone. But the wheeze was persistent and seemed to stay.) however this time we was very sick so we were worried about dehydration. We took him straight to A&E at our local Hospital. We waited for hours in A&E and eventually went up to the paediatric assessment unit where we would waiting in a bay until the doctor could see us. It was not at all busy, I have been there ALOT since Ziggy's diagnosis and I have never seen it this quiet. I'm telling you this because what I am about to say is in no way justified by the doctor being busy or over worked or having too may patients. Not that it would be justified by anything at all! He listened to his chest briefly. He then messed with his head for a while.
We noticed his funny shaped head at birth, he also had a very floppy ear and the other was relatively normal. His ears also looked like they wonky, if you looked at his head from above one ear was in front of the other which wasn't helped by his flat head which was due to him sleeping on one side. (we later MUCH LATER found out this was because of his heart).
So the doctor eventually finished faffing with his head and looked up me. I felt a rush of relief thinking he was going to tell me it ok I can help you, give him this medicine he will be fine. How wrong I was. He looked at me and said 'He is what we call a happy, Wheezy baby' I'm sorry but that is clearly not a fucking medical term. The relief soon scattered and I was overcome with worry and stress I felt like I had his a brick wall and I wasn't getting anywhere. Nobody was listening to me. Was I wrong? Was it all in my head? Could he just be a 'Happy Wheezy baby'? He then spoke to me like I was a bad parent. He then continued to question me about his head. Did I know hi head was like this? Yes I did. He sent me to physio to get his head checked out. He clearly thought he was being clever, thought he had found something that no one else had spotted. Well guess what if you had done an X-Ray on my sons chest you would have! and you wouldn't have taken away my sons chance to live a full life.
Physio was a waste of time. she explained that in her option everything was where it should be and his head was clearly flat because he favoured one side and as he grows and sits up more it should return to normal shape. All this normal talk is doing my head in...who the fuck is normal? We didn't see her again, she signed us off after a very brief visit.
So where were we? no help with his persistent symptoms, no answers to when he will improve and we had tried the GP and the Hospital where else do you go!? Hi persistent wheeze continue throughout. It got louder when he was ill and quieter when he was better. But it continue to stay. He was ill a lot! but we had a 'Happy Wheezy baby' what were we supposed to do? And I o need to add, he was happy, he was a very happy baby.
At 9 months old Ziggy was struck down by the same symptoms as usual however he was very sick again so we decide to call 111.
