I suppose, if you think about it, life is one great obstacle course which needs to be negotiated carefully. There are times when less care and consideration is required and there are times when no matter how hard you try, nothing seems to go your way – Today felt like one of those days for me….we are doing everything we can but the gatekeeper of this unit isn’t ready to let us out!
As I said on the previous blog, Orla is responding well to the IV antibiotics and is thus well in herself. Over the weekend, she needed some diuretics to help her pee the excess fluid she had accumulated from the extra fluids she was given on thursday and friday to maintain her blood pressure when the bacterial infection was causing it be low. Her breathing became quite rapid because of the extra fluid, she had a chest X-ray on saturday which revealed some of the fluid had made its way into her lungs and caused them to collapse slightly thus she was breathing quicker to compensate and maintain her oxygen levels. This has now resolved and she had another chest X-ray to check her lungs had cleared which they have.
The infectious disease team reviewed Orla today as the sensitivities to which antibiotic will work best to kill the bacteria causing Orla’s infection have come through from the lab. The antibiotic has been changed from two to a new one, not because the others weren’t working but the sensitivities give you info as to which antibiotic will work best. Unfortunately, the bug Orla had in her blood is reasonably robust and therefore a slighlty stronger antibiotic than initially thought is required which needs to be administered twice a day. The initial lab report suggested a different antibiotic that could be given once a day might be able to be used and thus the possibility of hospital in the home, this may no longer be the be the option we thought it was!! Luck was on our side in that the infectious disease doctors decided Orla Hickman’s line doesn’t need to be removed….a massive relief!
The greatest obstacle today has been the discovery that the Cytomegalovirus (CMV) has decided to rear its head again and is at high enough levels in Orla’s blood, well it was at least when the sample was taken last week when her fever commenced, to require treatment. It may have been reduced by now, another sample was taken today but we won’t find the result of this out for a few days. So in the meantime, Orla has had to recommence the antiviral medication, Ganciclovir intravenously, if the level comes back as lower, this may be able to changed to oral.
The nature of this BMT and the immune suppression that it requires means Orla is at high risk of infection. The nature of a child Orla’s age means everything goes in her mouth, plus the numerous medications results in explosive diarrhoea, poo therefore often gets on things including her Hickman line and even with the greatest of care, keeping bugs away is difficult, contamincation occurs and in turn infection. Dormant virus’ then take the opportunity to reactivate and the analogy a good friend used over the weekend, saying its like playing dominoes is in fact very true!!
Importantly, as you can see below, Orla in good spirits, even if Mum feels like she is going slightly round the twist after 11 weeks today!!