Saturday, April 12, 2014

Saturday...

And it continues.

Still no answers.

I live in hope that we are a step closer to finding the cause, but in reality I don't know if we are even half way there yet.

Today started with good news. Chelsea's excessively fast heartbeat (at rest) was reduced slightly and her high temperature lowered a little without the use of paracetamol - a first since her hospital stay.  She had to have an MRI scan just after lunch so was on a fluid only diet throughout the morning - but I was thrilled to hear that she had been allowed to walk to the scan accompanied; until today she hasn't even been able to walk the 10 yards or so to the toilet without a nurse protesting.  She said she felt fine walking (relief at the massive improvement!) but was shaking.  We hope to get the scan results tomorrow, but it could be Monday.  They are working on the Ulcerative Colitis theory as that is ticking most of the boxes at the moment.  More bloods have been taken today for more testing.   I hope that something becomes a conclusive diagnosis very soon and we can go forward with a treatment and control plan.

I find the not knowing any answers the hardest part.

It rather feels as if we are all headless chickens running around with a vague idea of  where the corn bowl may be but with no way of getting there.

I came away from the hospital feeling a renewed positivity.  Chelsea had been speaking well during our visit, animating her speech with arm movements like the Chelsea of old, and reaching out to hold a very happy to see her Amara for a cuddle - the signs of improvement were great although she is still oh so pale, so ghostly white.  Still a very grave concern is that her weight is showing absolutely no sign of gaining in spite of a healthy appetite and much eating of usually frowned upon by the medical profession foods.  The dietician is not at all happy and although she states that diet hasn't in any way been the cause of the condition, she made the suggestion that unless Chelsea puts on weight the consequences are well, they not something I wish to think about.  I'm not sure telling an ill patient who is eating all she is given, drinking all the special drinks she is told to (even though she cringes at the thought as they taste absolutely awful) and is clearly desperately trying to improve her condition that something beyond her obvious control could cause her death is really the brightest thing to do.  Nothing like piling on the stress and worry and I'm wondering what, if any, action should be taken about this - maybe a quiet word should be had in someone's ear.    

Once again Chelsea was told she is incredibly lucky to be alive and referred to as superwoman by a nurse reading her case notes for the first time today.  The haemoglobin count of 35 is, not surprisingly, difficult for some in the medical profession to get their heads around.

I am not sure that the severity of Chelsea's condition has entirely sunk in for me (or for her actually!) to be totally honest - it truly was (I am not saying is) life-threatening.  I find it difficult to come to terms with that, probably more so as Chelsea is very rarely ill - in fact I think it is 10 years or so since she last visited a Doctor and even then it was for what was diagnosed as 'growing pains'.  This is a full blown hit you in the face with a spade serious situation.  I'm just so so so very glad that the wonderful village Doctor went with his gut instinct and suggested a hospital visit that same day - if he hadn't of taken it so seriously, well, goodness only knows what we would be faced with today.

It has certainly been a wake-up call.

Never again will a day be taken for granted.

Never again will our family health be taken for granted.

Never again will I assume that it is 'just a bug' even if the symptoms fit with the one doing the rounds.

This evening came the disappointing news that Chelsea's temperature has risen again, so we are back to square one in that respect.  But we still have the hope that the scan results will reveal something and set us on the path of improvement.   I will cling to that.

There was a horrifically distressing moment when the patient in the next bed to Chelsea passed away today.  Words  just cannot express the thoughts in my head.  My thoughts and prayers are with the family of that lovely lady and for all those struggling with illness right now, including my own gorgeous daughter.

I just want her well.  I just want her home.