Just can’t keep away!


Today I woke thinking how lovely it was to all be home again. Nowhere to rush to and nothing much to do. Heavenly!

I should know by now, things don’t go the way we planned that often.

The  pump had worked a treat and Herbie had taken another 1000mls of fluid over night. He came down saying he wasn’t hungry or thirsty. First alarm bell rang!

After an hour of playing his ipad he said he felt hot and tired. As we left yesterday we were told to keep a close eye on his temperature. They had changed an antibiotic and although confident it was fine a temperature could be a sign that it wasn’t. Herbie asked to go back to bed.  We have  heard lots of other BMT patients talk about how tired they get post BMT but Herbie has never been like that.  However he had gone to bed very late two nights in a row so I let him go back to bed and decided to do his temperature.

Using a digital ear thermometer  he recorded 37.4 and then 37.5.  He felt warm so I used a tempadot that I had from GOSH…38.2! I was confused!

I took the temperature again 30 mins later.  37.5 by digital ear thermometer, 38.0 under arm using a tempadot.

Our community nurse Sarah arrived and agreed it was strange and he did look lethargic and he hadn’t eaten or had anything to drink. An other 30 mins later, so an hour after the first temperature I took both again. 37.2 by ear, 38.0 under arm.  As per GOSH protocol Sarah called the Reg at the JR who agreed it would be sensible to review him on Bellhouse Drayson as soon as his iv’s were done. As the iv’s started he became much more lively, chatty and generally normal looking again.  I took his temperature once more, using both methods. 36.6 by ear,  37.4 by tempadot … Very odd but still we needed it checked.

A rather jolly Herbster headed off with us to the JR to see the doctor on Bellhouse Drayson,  Victoria.  We went into room 24, next door to the room we left yesterday and actually the one Lily had for weeks after she left GOSH last June.  A familiar face,  Rebecca , met us at the desk and asked how things were and then Dr Victoria came in and checked him over. She decided blood from the line, from both lumens, was to be taken and sent for culture and a urine sample needed doing too. Everything seemed fine otherwise.


Another familiar nurse, Maz, was looking after us. She said the nurses were fighting over who would look after him and she had won! She took the blood and also did obs, temperature 36.2!  SATS & heart rate fine. Urine was clear and finally after 3 hours we were sent home with strict instructions from Professor Pollard to stick with the digital thermometer.  Maz hep locked his Hickman line and then said goodbye. Once again we headed home.



Once home normal serviced resumed!

Sadly the impromptu visit meant we missed Shannon cutting her long locks off to give to children to make wigs for those in need.  What a courageous and selfless act. Well done Shannon, hope you raised loads.

Here’s to a peaceful few days…

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