Eradicate, Eradicate

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Since May 2017 E has been on an intensive, time consuming and sometimes soul destroying treatment regime. The aim - to rid her lungs of  Pseudomonas aeruginosa.

She has inhaled antibiotics twice a day – every day and had them pumped into her veins.

We wanted to eradicate this bug which had made itself at home in her lungs. We didn’t want any permanent, lasting damage.

She needed to have 12 months clear before we could stop this additional treatment. The pseudomonas grew back. Twice. Reset the treatment clock. Positive mind-set. Resume our new normal.



We have poured our hearts, minds and toddler negotiation skills into her treatment - never missing any. This has meant we have had to plan days out and activities around her treatment. Ensuring we always had access to electricity, to a television (distraction!) and to hygienic surfaces so that we could clean, air dry & sterilise medical equipment. We still had fun, adventures & lots of love but it was always there...in the background.

Yesterday, 31st January 2019 was a significant day for us. We packed away the nebuliser. We rejoiced & embraced this small victory. E, our strong, brave and resilient girl has been free from pseudomonas aeruginosa for 12 whole months.

We still have twice daily physiotherapy sessions to do with a wriggling toddler. We still have antibiotics and vitamins to administer.

We still need to keep E away from some environments (there are bugs in the environment - pseudomonas for example -  that can cause very difficult infections for E  – these bugs live in damp, rotting vegetation or stagnant water) whilst not keeping her in a sterile  bubble.

Whilst we are acutely aware that she could, and probably will, grow pseudomonas in the future we are living in the moment, counting our lucky stars and sending a big thank you to the CF team at the RMCH.

Comments

  1. K Lawty3 February 2019 at 12:46

    You are incredible parents and couldn't do any more than what you do. Such fantastic news that she is clear of that nasty pseudomonas! Nicely written too.

    ReplyDelete

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