It has been a tricky few days in the hospital culminating in a mini-crisis this evening. Perhaps we have tilted a bit too hard and fast at the exit and Isita is not ready yet, either physically or psychologically.
The doctors and nurses are working on a pair of objectives, each of which would be a huge advance. The first is to take Isita off her intravenous pain relief and to replace it with oral morphine. This would make her much freer and would remove one of the last impediments to our return home. The second is to get her drinking tiny quantities of dairy-free feed – the beginning of the final stage of her post-chemo recovery. As this is likely to cause some stomach pain in the short term, it is not exactly compatible with the first objective. Isita drank 10mls of the feed this morning and was also without morphine for several hours. By late afternoon she was in more pain than she has been for a few weeks. Obviously, we have pushed too hard.
It is probable that getting Isita’s metabolism working again can’t be done without some temporary pain. We don’t really know if the belly cramps are caused by the water she is now drinking in tiny quantities, the feed, the continued healing process, or maybe even by hunger. Real as the spasms are, there is also a mental element to what she is going through. We have spent months explaining that she should not eat for her own good. It is no wonder she is now scared to start again.
Happily, she is enjoying feeling water in her throat once more. However, we think she is also intimidated about the idea of no longer having the pain pump which gives her pushes of morphine on demand. She was on very high doses, so withdrawal is difficult. Maybe even the idea of going home and away from all the care and support of the hospital is frightening.
She has already thought most of these things through to an impressive degree. One of her earlier inhibitions about trying the liquid feed was that it might have to be administered through her nose tube, which was inserted more than a month ago, so needs changing. I think she would rather starve than go through that procedure. Poor thing. She has weathered so many changes. Just over a week ago, they took out the thaloset needle from her thigh, through which they gave her the anti-bleeding drug. Now, every time she coughs or sicks up, she anxiously scans the bowl for signs of blood in case they have to put it back.
A week ago, the audiology department came to fit her with her ‘super ears’. One of the unpleasant side effects of the induction chemotherapy was that she has lost some of her hearing – specifically she can’t hear higher frequency sounds. Most of the time you can’t tell, but if there is another conversation going on she can’t follow what is happening on TV very well.
Normally, the news that your child has a hearing impairment might be the worst you get all year. I am afraid for us it has been just another bloody thing. When the aids were fitted, she was delighted. One of her earpieces is sparkly mother of pearl. The other is sparkly red (because it is Jamie’s favourite colour, can you believe it). There are a lot of people we have to thank for this. The audiology department themselves were very gentle and positive. One of the hospital psychologists pointed out that it was no different from getting glasses to fix your eyesight.
“Mummy wears glasses”.
“She certainly does, my love”.
Then Shirlei, the wonderful play specialist, found that the Children’s Hearing Institute in New York had worked with Marvel comics to create a pair of hearing-impaired super heroes – Blue Ear and Sapheara. Ewi picked up a couple of copies and Jake brought them over. Isita found the idea thrilling. Altogether, something which could have been depressing became quite exciting. Latterly, it has been more difficult to get her to wear the devices much as they feel a bit strange.
Despite the complications, other good things have happened over the past while. Last weekend, Marta and I were able to go away for a night to stay with Charles and Virginia, while Isita’s teacher Kate had a sleepover in the hospital (including a decorous pillow fight, apparently). On some evenings last week, when free of the pumps she was running laps of the ward, and reducing the nurses to tears, as they thought of how sick she was in the summer. Last night a lovely girl called Heather taught her the elements of playing the ukelele and left her one to practise on, courtesy of the Ukelele Kids Club. She’s a natural!