St Mary’s detour

For the past two days, Isita has been at St Mary’s Paddington. We had to go in early on bank holiday Monday as she had a raging temperature. To start with we thought it might be heatstroke, as she had been having the time of her life on Sunday paddling her feet in the swimming pool at her cousins’ house in Surrey. This afternoon they told us that they had identified a chest infection. It may not sound like good news, but it is. Now they can target the antibiotics, and if they work well, there is a good chance she will come home tomorrow.

This was, perhaps, the likely consequence of a fabulous few days of fun and activity, play dates and running about in the garden just like old times. It is easy to forget that Isita is still quite weak and when she is worn out her defences are down. Having said that, we have had the best fortnight since this saga started – happy home life has once again become the norm rather than the exception. The best barometer of our family well-being is how happy Jamie has been the past while. As much as they bicker, they miss each other terribly during the hospital periods.

Isita has the gift of happiness. Even in the hospital she is very happy. In the cooler evenings we have been taking her down the canal to Little Venice, so she hasn’t entirely missed out on the ‘Indian Spring’ or whatever we must call this unlikely heatwave. We haven’t told her that she has a lung infection as she is terrified of the prospect as it takes her back to the infection that landed her up on a ventilator in intensive care last autumn – one of the more petrifying episodes for us too. It is impossible to look at her now and think back to that nadir.

As well as the fact that her hair is now much longer – it is very fine and sticks up in sweet little tufts – Isita no longer has a nose tube. This is big news which I forgot to write about when she had the gastrojejunostomy operation just over a week ago. We had grown used to the ‘NJ’ and anyway she had the enviable ability to look good with a bit of plastic coming out of her nostril. But without it, you can’t tell that there has been anything wrong with her at all. Not until she lifts up her dress and shows you her new ‘peg’ as we call the tube which goes directly into her tummy and also the top bit of her small intestine.

Having the peg put in is a recognition that we are going to be feeding Isita through a tube for a long time yet, but also a confirmation that the feeding is working. If it was a dead loss they wouldn’t have done it. For the first few days Isita was terrified of it. The more you think about it, the odder it is. But, in fact, it is much more comfortable, and we are already seeing the benefits. Without the feeling of the line going down the back of her throat she is swallowing more and even swallowing some food. This is a great small step. It is about a year ago that she went ‘nil by mouth’. Now she puts a lot of food in her mouth but spits most of it out. The more she swallows the closer we are to getting her properly well again.

4 thoughts on “St Mary’s detour

  1. What a lot of information. Mainly good. Had long wondered about a peg?
    Hope St Mary’s is behaving or you have escaped.
    So glad to hear of fun and games in the sunshine.
    Best love
    Henrietta xx


  2. Good to read all the positive elements and so happy that ‘bickering’ is in the household between the siblings! Great that the nose tube has gone and the hair is reviving – bug hug brave girl love Mrs T x


  3. Awesome news!! A fortnight of fun and games, no nasal tube, feeding is working, targeted antibiotics…. Woohoo!!!!!


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