We have made an incredible breakthrough in the past few days. Isita is now off all intravenous pain relief, and indeed off nearly all intravenous drugs. The only thing going through her hickman line is the TPN, in other words the nutrition, which keeps her going until she can eat properly.
This means two things. First of all, she can come home for a lot of the day. Secondly, the doctors have put in an application for Marta and me to be trained in administering the TPN. We will probably start next week. Once we have mastered it, we can bring Isita home completely. Contrary to our earlier expectations, there is a good chance that we can achieve this before Christmas.
The main things which could change this are another major infection of the sort which sent Isita down to intensive care a month ago or – at the other extreme – if her platelets level recover sufficiently that the surgeon agrees to operate. The doctors are pretty certain that the latter won’t occur before the new year. We have begun to allow the hope of spending Christmas all together here at home to seep into our hearts. Even if we don’t quite make it, we are already enjoying the great pleasure of home life for a few hours every afternoon.
If Marta and I and Jamie are affected by this, we can only imagine that the impact on Isita is almost overwhelming. It has been so many months since she was here or even outside the ward. She has enjoyed it, but she is also a little bit fractious, which may mean she is scared.
Encouraging as it is to see her so fit and lively, she has some difficult hurdles yet to overcome, not least to start eating again. The dribble of formula we give her every day has increased in volume but is still tiny. The challenge is now as much psychological as physiological, and the two are intertwined. If we switch on the feed when she doesn’t notice it goes OK. As soon as she notices it, or if something else upsets her, she is sick, and sometimes a bit of blood comes up. The fear becomes very real.
The first results of the colonoscopy and endoscopy she had last Friday have shown that the poor girl is suffering from oesophagiitis – an inflammation of the oesophagus. This is more commonly seen in adults after chemotherapy. She also has a lazy stomach. So although there is no physical blockage, her motility is poor. This means that the contents of the stomach hang around for a bit instead of passing rapidly into the small intestine. If her stomach is too full, she is sick, and her sore food pipe means this is particularly unpleasant. We may get further diagnoses when the results of the biopsies come through at the end of this week or the beginning of next.
There may be a drug that will increase the motility of the gut, and some sort of physiotherapy might also help. They may also put in a longer nasal gastric tube which will extend through the stomach into the duodenum.
Heaven knows if she will be able to eat anything over Christmas even if it is just chicken broth or mashed vegetables. Our hope is that the next few weeks of home life, even perhaps some time at school, and a few outings around the city will give her the fillip that is needed.
It has been a turbulent few days. A couple of people have arrived at Elephant Ward only to find no one in her room and have been wonderfully happy about their wasted journeys once they have worked out where we are. We depend so much on that generosity of spirit and can’t wait for the time when we can greet at home everyone who has lightened the burden of these past months in the hospital.
13 thoughts on “At home for the day”
Nos alegramos muchísimo y esperamos todo vaya bien estos días y estéis en casa estás Navidades! !Que bien!Un beso enorme. desde Sevilla seguimos rezando.Beatriz,Manolo y niños.(Martita cuídate mucho)
I am overcome at the progress ,despite serious problems.
Totally thrilled you can get home even for a few hours.
Long may it last.
Obviously a massive change for Isita ( stuck in her room for months on end ).
May it all creep forward.
God Bless you all.
Incredible news indeed! I couldn’t be happier. Thsnk you very much for sharing
Suena todo esperanzador. Qué alegría!
Absolutely wonderful news. You are all so amazing and we send you all our love. xxxx
Que bien leer tantas pequeñas victorias!!!! Que maravillosos padres y hermano tiene Isita , disfrutad cada ratito juntos .
Muchos muchos besos
Reyes ,Felipe y los niños .
so encouraging….thinking of you four and sending much love!
💖✨✨💖Que alegria✨Mil abrazo de todos
Great to hear this news. It is very moving.
que bien os sienta estar en casa! que alegria!
Well done that is a big hurray. Very pleased for you guys …. what a major step forward.
Best photo of the month!!!