Saturday, January 2, 2010

It was the best of times it was the worst of times

Master R taking his bear for a ride.

Dear Mamas, I do have a good reason for being MIA. Not only did I give birth to Master T in late August, but we've had some health issues with Master R which have really overshadowed everything and caused me to make some decisions about work/life balance.

From the time Master R was 4 months old I just knew something wasn't right. I was the envy of many of you Mamas with his infrequent bowel movements. He would generally go 1-2 weeks and then have a major "evacuation", the medical term. Tribeca Peds continually brushed me off saying it was normal for a breastfed baby. One of the worst events happened while we were on holiday in Barcelona. He hadn't gone for 16 days and was in considerable discomfort kicking his little legs and moaning. His stomach was quite swollen. We decided to take matters quite literally into our own hands and lets just say that new towels were ordered from reception.

Every checkup I continued to press the doctor for answers. I asked every medical person who listened but everyone said it was normal and would work itself out when he went onto solids. However it didn't. And when Master R was able to stand he started doing this little dance when he needed to poo. He would rock from side to side holding onto a table or chair and just strain. The interesting thing, without wanting to be too graphic, is that the bowel movements were normal, not hard. Well meaning friends would tell me to give him more prune juice or lentils but it isn't consipation.

It got really bad just before Master T was born. Master R would be screaming in pain with each movement which was now 1-2 times a week. Finally in August when my mum was here she decided it really wasn't normal and we'd have to see a specialist. Dragging along poor little 1 week old Master T we went to a paediatric gastroenterologist. To cut the story short he gave us a series of constipation medications which didn't work except for Picolax which is the very strong laxitive you take before a colonoscopy. If we took the quantities Master R did we'd be on the toilet all night but they just give him a normal 1-2 day movement.

When tests for Crohn's and Caeliac disease came back negative we had to use invasive methods to rule out an obstruction of, my worst fear, Hirschsprung's. On 8 December Master R went to hopsital and under a general anesthetic underwent an upper endoscopy where they put a camera down his throat into the bowel. The actual procedure only lasted for a very long 20 minutes. Straight after the GI specialist told me there was no obstruction, cancer, but we'd have to wait a week for the results of the biopsy.

Master R actually being in the operating room was bad enough but the worst thing, and something they didn't prepare me for, was him coming out from the anesthetic. He was like a wild animals clawing at me and howling in pain with this horrible hoarse scream. I could barely contain him and the nurses were completely calm almost ignoring me struggling with this fighting toddler. This lasted for about an hour and unfortunately I had to do it alone because the nurses had told Mr M that the op would take an hour or more and he'd gone out for a snack!

The results took longer than a week to get back to us with Christmas and doctors away. Finally my daily calls begging for the results paid off and on 24 December I had my best ever Christmas present when the secretary told me it wasn't Hirschsprungs. The bad news is that we still don't know what is wrong. With the Picolax Master R is quite regular at 1-3 days and not is as much paid. Clearly we don't want to have to rely on drugs forever but we'll have to wait now until we return to London to decide the next stage of testing.

Perhaps even more concerning is that the tests revealed that Master R has a thyroid problem and his thyroid will eventually give out. This could be in 6 months or 16 years. He'll need regular 6mth blood tests to monitor the situation. Then he will need to rely on drugs for the rest of his life to keep his thyroid levels normal.

That was last year. 2009 was beautiful for us with the arrival of Master T and Master R's continued development. But it seemed to be a tough one for many of us and I'm glad to close the door on it and open a new chapter with 2010. Happy New Year Mamas and I'm missing every one of you xx

2 comments:

  1. Oh Mama, N, what an ordeal! Bravo for listening to your mama intuition and looking for some answers, I hope you get some soon. In the meantime, glad the medicine is helping Master R feel better.

    As for the thyroid, is there anything to be done with this accidental discovery? Or can you just wait and watch?

    You're right, 2009 has been a strange year, here's hoping 2010 is better for everybody!

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  2. Our thoughts are also with Mama A and Mama H as they deal with their sick little darlings.

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