Isita is back at GOSH. She came here from St Mary’s yesterday afternoon in an ambulance with the blue light flashing, which she was thrilled about. This episode started on Tuesday evening after she had sicked up her nose tube for the second time in as many days. Our plan of postponing the torture of putting it back again was interrupted by a call requesting us to take her into St Mary’s to have her potassium levels topped up.
Like a total beginner, I moseyed in to paediatric AE late in the evening with Isita, an iPad and a couple things in a carrier bag thinking we’d be back home in a hour or so. There followed a somewhat uncomfortable night and the lengthy game of balancing the electrolytes in her blood began. The first IV infusion of potassium didn’t do the job. They gave her another one. It sort of worked, but then the bicarbonate IV knocked it down, so they had to give her more potassium. They then had to correct the magnesium and phosphate levels. And so on.
On Wednesday morning, Isita was due at GOSH for the MIGB scan. That never happened because she couldn’t leave St Mary’s with low potassium levels which can trigger cardiac problems. On Thursday they gave her even more infusions and some blood transfusions. They helped, but not enough. On Friday morning, I helped a couple of nurses to put in a new nose tube. It is complete torture. She is justified in hating it. The infusions continued.
Throughout all of this, Isita has seemed very well: no temperature; no stomach upset; not eating much, but not being sick either. But as one of the doctors on Grand Union Ward explained on Friday morning, the reason her electrolytes have not stabilised is that her kidneys are more “leaky” than they should be. This is one of the side-effects of both the cisplatin chemotherapy and the cidofovir anti-viral drug. It introduces another element into the game of chess which is Isita’s treatment plan. We have to get rid of the virus entirely before we can do the stem cell harvest – and happily there aren’t many symptoms of it being around. But if more treatment is necessary, cidofovir may no longer be an option.
So on Friday evening, with her potassium levels at borderline level, they put Isita and Marta in an ambulance with the blue light flashing and whisked them to GOSH as quickly as possible. The last time they took a similar ride was from home to St Mary’s five years ago when Marta went into labour. I think they both enjoyed it more this time.
The tremendously reassuring thing about GOSH is that the doctors are the grand masters of Isita’s treatment, with the experience and judgement to call the next moves correctly. They say what Isita is going through is completely usual and that Isita’s kidneys will recover after a while. A terrifying prospect has receded to become another hard step in the difficult journey to recovery. In the meantime, Isita will go through the full panoply of tests during this coming week which will give us a much better idea of what will come next.
7 thoughts on “Blue light ride”
All thoughts on you all with love – sending a huge hug x
Most dearest ones: thank you again for keeping up the news.
Doctors sound terrific: how very reassuring. But then they are famously so at GOSH.
I think you need more Pate: we will be back in a week and I will see to it…
All our love and thoughts as always
Charles and Virginia
Sending hugs, thoughts and prayers. Xxxx
Os envío un abrazo enorme y lleno de energía, familia Hamilton Enrile
Thinking of you and sending lots of hugs and prayers.
Pienso mucho en vosotros. Besos
Mucho ánimo, muchísimo ánimo que ya queda menos y hay muchísima gente rezando por vosotros