Emotional roller coaster

Tuesday 20 Dec 2016

This time last week Little S was scheduled to be in the Cardiac Intensive Care Unit (CICU), recovering from open heart surgery that would have provided her with a bigger pulmonary valve and given her more puff, more energy and make her less blue.

Today or tomorrow she would have been scheduled to leave hospital and come home for a 4 or 5 week recovery period.

Instead, on the morning of the day that we were due to go in, GOSH called off the operation because Little S had picked up a cold virus.

She often struggles with a cold at the best of times, so giving her the challenge of recovering from major surgery whilst feeling a bit under the weather? No, I don’t think so. That would not be a good idea.

GOSH knew that she had a virus because they’d tested some snot that, on the previous Friday, they’d sucked out of Little S’s nose!

On that Friday, we spent the best part of the day (did I say ‘best’?) convincing, conniving and cajoling Little S though various tests – bizarrely, she was quite content during the hour and twenty minutes that she spent having an ultrasound (probably due to the well-placed TV above her head showing CBeebies the whole time), the ECG wasn’t too bad, and even taking the bloods was no worse than usual, but she screamed through height, weight, SATs and mouth swabs like they were the start of the actual operation!

Apart from Little S being in the main brilliant for most of the day, I think we also owe a huge debt to the wretchedly addictive iPad app Colour Switch (I’ll make it past Level 4 next time!) for helping us pass the time. 

We would have made it home sooner but we were asked to wait for quite a while for Mr K, the surgeon that was going to do the operation, and the same surgeon that operated on Little S five years ago - he was in surgery for most of the day. 

We felt that it was important that we met him though. Despite the fact that he reminded us of the some of the big risks involved in the operation, there is a reassurance that comes with having met and spoken to the man that is going to hold your baby's life in his hands, especially as he also reminded us of the real need for the operation (but not so urgent that we shouldn't wait until Little S's virus passes) and the intimate knowledge that he has of the condition of Little S's heart and arteries.

Whilst we waited for Mr K, we (including Little S) were shown around the CICU - it's changed a lot since we saw it last five years ago: much newer, quieter, more spacious and more modern - a lot less frightening. We even told Little S that this is where she would be after her operation and she didn't seem too freaked out.  

She was also with us when we spoke to Mr K - not sure that that was our smartest move, although it didn't seem to have much effect - Little S just carried on with her Colour Switch moves and didn't take much notice of our conversation but I bet she picked up on at least the odd word and phrase.

Over the next couple of days, during which we weren't sure if the operation was going ahead or not Little S got very upset before going to bed a couple of times, crying that she didn't want to have the operation, although it made us feel better to some extent when we got her to explain why she was worried and the worst fear she had seemed to be that she wouldn't be able to sleep as they would keep waking her up during the night!

The upshot was that having had all of the emotional preparation for a major operation, and worrying big time about the possible things that could go wrong, and assuming that we would effectively have to cancel Christmas this year, we've ended up with our holidays back and we wait for the date of the rescheduled operation. 

Monday 26 December

It's both Boxing Day and the third night of Chanukah tonight and we're able to make sure that Little S has a wonderful holiday and to forget for a while about the operation. 

We've been told that it will be on 31 Jan with Little S going into hospital the night before. No need to do pre-ops again. 

This afternoon Little S asked, apropos of nothing, whether she will be able to do more stuff after her operation. 

We said that she'll probably still need to use her wheelchair but that she'll have more puff and should be able to walk or run a bit further, climb a few more stairs and feel a bit less tired. And it should prevent her ending up with less puff, which she might do if she doesn't have the op. 

It's a bit of a hard sell keeping her feeling positive about the operation whilst not worrying her too much about the consequences of not having it. 

Meanwhile she's having a lovely time in Brighton, and as long as she's smiling and happy, so are we. 

So whilst the sun is out and the skies are blue, Merry Xmas! Happy Chanukah! And a very happy and healthy new year to one and all!