Friday 17 January 2014

Pyloric Stenosis...have you heard of it?

I hadn't
This is a long post, so get comfy! I've wanted to write this post since I started blogging. It's not intended to worry anyone but to raise awareness.
Eliot had been a 'sicky' baby since he came into the world. In fact he gave me quite a fright the day after he was born. His 'windy' sickness continued after feeds which was what we were told and presumed was the 'norm', until just before he turned six weeks old.
It was the early hours of a weekend morning and the OH's turn to get up to feed Eliot. Whilst he was winding Eliot I heard an almighty gush and splash. He had vomited everywhere  much more than usual, the sheets had got a soaking and  the muslin had failed its use. I remember saying 'It's not fair! He has his milk then brings it all back up'. Poor little man. For the rest of the day there were no more similar occurrences. I wasn't worried as Eliot was his usual happy self, just a bit more sleepy.
During the night I was awoken by the sound of Eliot being his sleep. Some had even shot out of his crib onto the carpet. I changed his clothes and bedding, after some tears Eliot was sound asleep. I was a bit concerned as this had never happened before but he didn't have a temperature and had happily gone back to sleep.
The following afternoon Eliot brought back quite a bit of a feed. It was different from normal, it had pale brown bits in it.
I'm sure many of you who read this would have rushed to A&E now or got in contact with your doctor.  
As Eliot was still very happy and taking all his feeds I didn't think it could be anything too serious. I was going to see the clinic to the health visitor in the morning so I could discuss it with her.
The next day Eliot was weighed at the clinic and had put weight on. As we waited to see the health visitor he was sick after a feed. This time I was concerned, on his bib was a bright red blob. Blood in his sick! I left it there so I could show the health visitor. When we were called in I told her of my concerns. The health visitor was relaxed and not worried at all. She said it was 'just reflux'. She was happy he was putting on weight, he was eating, he was happy. Even when I mentioned he'd had brown bits in his sick the day before and pointed out the blob splattered on his bib, she was not worried at all. She had no explanation for it but discouraged me from going to my GP!
She scribbled in the red book and off we went...straight to the GP to make an appointment. Still I wasn't panicking.  I suppose I felt reassured that she hadn't been at all worried but shocked that she hadn't told me to go to my GP to be cautious.
At the GP  we were booked in for an appointment the next day.On the way home we bumped into the OH's mum. I explained all of the above, including that I wasn't too worried and that we were seeing the doctor in the morning. She was a bit concerned but I put it down to that trait being part of her character.
I rang my friend who had a nineteenth month old and after explaining what had been going on she told me to just take him to A&E. She said she'd been to hospital a countless amount of times when her son had been ill.
I suppose I was in denial, Eliot was happy and feeding well! I suppose I was reluctant to be that first time mum who panics.
I text my friend who is a paediatric nurse in a special baby care unit and asked why he may have had blood in his sick.  When she was able to get back to me she explained that he could have irritated the lining of his throat/stomach due to being sick a number of times. This made sense, he had 'reflux' so this was likely.
That evening I rang my parents to tell them what was going on. They also said I should take him to A&E. I explained that the health visitor wasn't worried, other than that and being more sleepy, Eliot was his usual self. And we were seeing a doctor in the morning.
I'd turned to the  trusty old internet to diagnose his symptoms and was led to an explanation of pyloric stenosis on the Great Ormond Street Website.
'Pyloric stenosis is when the passage between the stomach and small bowel (pylorus) becomes narrower. The passage is made up of muscle, which seems to become thicker than usual, closing up the inside of the passage. This stops milk or food passing into the bowel to be digested.'
  I read up about it on other websites too which mainly highlighted there would be lots of projectile vomit. Some of Eliot's symptoms were similar but not exact.
At the doctors the next day, she checked him over, felt his stomach and asked lots of questions. Including had he been projectile vomiting, had he been pooping and passing wind. He hadn't done a poo for a few days but had been windy. The GP thought it was reflux and prescribed Infant Gaviscon. She also gave a prescription for lactulose if he hadn't pooped by the following day. I was booked in for a follow up phone call in two days. In the meantime she told me to go to A&E if it got worse.
That afternoon the Infant Gaviscon seemed to be helping and Eliot had a poop. It looked as though we may have found the answer to the problem.
This was short lived. After a lunchtime feed the next day, Eliot was forcefully sick all over the kitchen floor. The Gaviscon wasn't doing the job it was supposed to.
I took him to the nearest A&E, back at St Thomas' where he had been born. They have a children's A&E department within the main A&E.
We weren't waiting long before a nurse called us into a cubicle. I described everything that had been going on and  was told a doctor would be in shortly.  I was also given some bits to try and take a urine sample from Eliot (not an easy task).
When the doctor got to us I retold the events again. He said he was going to take a blood test as there were a couple of things it might possibly be. I mentioned Pyloric Stenosis and he confirmed this was one of the things he suspected. At this point I was still in denial I didn't believe it could be that. There were phone calls back and forth to the OH.
When the doctor returned he said the blood test results were inconclusive and Eliot was being sent for an ultrasound scan over in the children's hospital. I put Eliot in his pram and a nurse walked us round.
I'd been to the children's hospital whilst pregnant as that's where they carry out the ultrasounds to check if there are any heart problems.
I laid Eliot on the bed and he was scanned. Coincidently a paediatrician came in to see the sonographer. He pointed out on the screen that the 'pylorus' muscle wasn't opening. Eliot did have pyloric stenosis. That meant he would need an operation, there is no alternative.
I was shocked, dazed. Was this really happening to my baby boy? The nurse took us back to A&E where Eliot would be prepped to go on to one of the children's wards straight away. There would be no more feeds until after the operation.
I stepped outside the cubicle and burst into tears as they put a tube down him to remove the contents of his stomach. The doctor also inserted a drip to replace the fluids he would be losing by not having his feeds. I rang the OH and told him to get there immediately.

Soon we were taken to the children's ward. The doctor who had popped into the scan room came to discuss the operation with us. As Eliot's blood test had shown his blood gases weren't normal he would not be able to be operated on until they were. We were told it could be the next day or the following one. I prayed his blood gases would be back to normal by that next day. The hardest thing was not being able to feed him, I knew he was starving and looked at me as if to say 'why aren't you giving me my milk?!' It was heart breaking.
I stayed with him overnight on the pull down bed next to his cot. Unfortunately he pulled out the line giving him fluids which meant it would need inserting all over again! Not a pleasant experience to witness when they find it hard to get a vein. The nurse on duty that night was lovely and reassured me the doctor would be with us a soon as possible. I was getting increasingly concerned as I knew he wasn't getting any fluids.
Eventually a doctor got round to us. After failed attempts to insert a line I the back of his hand she placed it in his foot. They had taken more blood and she told me his blood gases were now normal. I was relieved, this meant the operation could take place the next day.
The nurse told me to get some sleep as we had a long day ahead of us. She was wonderful at caring for Eliot.
Before the op
In the morning another doctor came round to talk over the operation again, go over the risks again. I signed the consent form. Then it was just a matter of waiting to be called to theatre.
Poor Eliot seemed to know he wasn't gong to be fed and hadn't cried as much. We were then visited by the anaesthetist who asked about family history of allergies etc to anaesthetic.  
Just before lunch the nurse received a call to say it was Eliot's turn to go to theatre. I carried him down, hugged and kissed him before the surgeons took him. I burst into tears as we walked away. I know its morbid but I did cross my mind that it could be the last time I saw him alive. The operation itself was straightforward, a little incision above his belly button. It had small risks but all sorts of things were going through my mind.
The OH and I went to grab some lunch and my mum arrived shortly after. Then all we could do was wait. Wait to hear if it had gone ok...or not.

Thankfully, when the call came the op had been a success. The nurse took us down to recovery so he could be brought back up to the ward. He looked so pale and dozy after the anaesthetic.


After the op
The next step was to introduce feeds in small amounts, increasing them gradually. The feeds went down successfully with none being brought back up. This continued over night as the amount increased.
The next day I was worried about his wound which was stitched inside and had steri-strips outside. It looked red where it had rubbed against his gown when I'd fed him and had been bleeding.
The doctors had already been to see him and were happy to discharge him that afternoon. I couldn't believe it after we were in hospital for days when he was born. I was reluctant to go, worrying we would be returning.

The day after the op looking much brighter
When the doctor came and had another look he removed the steri-strips, cleaned the wound and put on new steri-strips. He was still happy for Eliot to go home. At the time Eliot's feed was also due so we had started it whilst he was laying down. Soon after he was a little sick. I panicked calling the nurse over who said it was probably because we'd started his feed whilst he was laid down and just a bit of wind. Now I really didn't want to go home! She told us to stay until after his next feed for reassurance.
So we did and the same thing happened, Eliot was sick. The nurse reassured us again and told us to stay for his next feed if we were that worried.
We did, the last thing I wanted to do was to take Eliot home only to have to go back. If he needed to be there then we would stay.
To add to the concern, around his belly looked red. I was worried it could be an infection. The doctor came and had another look. With a pen dotted around the edge of the redness. This was to monitor if the redness was spreading.
Luckily it didn't seem to spread any further but we did stay for another couple of feeds, before leaving that evening.
Thankfully we have not been back to hospital and Eliot has done fantastically since.
Eliot's sickness still continued after feeds so we have been back and forth to the GP. He is still on Gaviscon but his reflux seems to have improved since beginning weaning.
I made a complaint about the health visitor who told me not to go to the GP.
I have little faith in the health visitors I've seen especially after our most recent visit where I was told to 'add salt' to Eliot's food!
Every health professional I saw during that time and that I have seen since, asked if he had been projectile vomiting a few feet. He hadn't. It appears they have this misconception, but rely heavily on this one symptom for diagnosis.
 In hospital I was told I had got Eliot there at the right time even though I felt guilty I'd not taken him sooner.
I was told that babies can become so ill from dehydration when pyloric stenosis is not found early, that they end up in hospital for long periods of time.
So please, if you are concerned about anything with your baby don't make the mistakes I did. I wish I'd listened to family and friends and taken him to hospital sooner. I wish I had been an overly concerned first time mum.
Pyloric Stenosis becomes apparent when a baby is around six weeks olds. It is more likely to affect first born's and boys.
Apparently it is fairly common although I had never heard of it nor knew anyone whose baby had it.
Has your baby had pyloric stenosis? Are you aware of someone who has?

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