Tuesday, March 6, 2007

Left Pulmonary Sling

Took A back for her heart scan after last abortive attempt. This time she went to sleep, and stayed asleep during the Echo. The paediatric cardilogist took ages scanning her. Having initially been quite relaxed (for once) as I had been reassured 95% of murmurs were 'innocent' I became more and more on edge, convinced something was wrong as he kept goign back over the same area and changing her postion and looking again. It took over 30 mins. Finally he finished and said he strongly suspected our daughter had a "Left Pulmonary Sling" meaning instead of growing in the right direction in front, it had looped round the back, of her trachea, constricting her windpipe (hence her history of wheeziness) He said he wanted to do an angiogram to confirm the diagnosis.

She was admitted the same evening. This entailed more blood, sweat and tears, literally as the nurses tried to take blood. I find these times in hopsital here so stressful. Not only am I always dealing with it alone because M has always been away when she has been in hospital, but also the nurses don't seem to be paediatrically trained or know how to look after children. Their methods employed the 'strength in numbers' theory. This involved five nurses holding down various bits of her in order to extract the required blood from her. As usual she fought; screaming, crying, sweating, and wheezing. To be fair I was doing a fair bit of crying and screaming at the nurses too.

The angiogram only took 20 minutes. But it seemed a long time.... . When I went to fetch her she was elastoplasted to a board by the legs so she couldn't move and was NOT impressed. I was told at all costs to keep her still because of the procedure having put dye in through the artery in her groin. Easier said that done with an irate 23 month old, struggling to get free of a taped board.

The cardilogist showed me on the computer how her left pulmonary artery was wrapped round her trachea. He said it was extremely rare (there again is the statistical anomaly. We were given a 5% chance of conceiving even through a complete IVF cycle. She was a frozen embryo, so even less likely to be successful) He explained it would require open heart surgery.

Reeling from the shock of this, yet also relieved that we had an answer, that it was operable, we were also very encouraged by the love and support of many friends from back home who phoned us in the hospital, and at home. We then had to begin the whole process, of deciding where to have the surgery done, when etc. Being overseas with medial insurance in fact made it a huge blessing as that would pay for it to be done privately, and therefore quickly. Following timely conversations with medical friends, a cardologist, godparents whose child had heart surgery etc, even someone who knew the professor of the cardiothoracic unit there, we decided to go to Great Ormond Street, and were duly accepted. GOSH said again and again how impressed they were by our Paediatric Cardiolgist's clinical excellence, and diagnosis through ultarsound, of our daughter, an extremly difficult diagnosis said.

We then discovered it could be a lot more compliated as they thought there was significant compression of the trachea which would require quite radical tracheal surgery entailing a much longer stay in hospital and more operations, and with potential complications.

I worried about her more than ever, and found I began to sleep very badly too. I would wake every night, much as I did with her as a newborn, with that new mother's sense of unease and went in to check her breathing. I found I had cot-death type anxiety all over again. I knew it was irrational, but I would go in and listen to her breathing/wheezing and wonder if this structural defect would mean when she had a cold or was wheezy, whether she would stop breathing. Of course she never had despite bronchiolitis, pneumonia and numerous respiratory illnesses.

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