As per usual, nothing ever seems to go to plan ...

So in my last post, I detailed what was going to happen in our lives:  Alyssa having spinal fusion surgery, then being put into a body cast, and immobilised in her wheelchair for several months.  That should have gone ahead on the 28th March.  

However - as seems to be the norm, in our lives - Alyssa became ill in the week leading up to her birthday.  Increasingly so, with temperatures of 40C and above.  But when her temperature came down, at times, she seemed really well, so I initially thought she perhaps had a viral infection.  As the week neared the end, I knew she was going to be admitted, and - in an attempt to stave off a hospital admission on her birthday / her birthday weekend - I took her to the GP to have her seen. Explained that she was having really high fevers, that her L elbow cellulitis hadn't resolved from January, but that she was also a bit breathless, so I wasn't sure which issue was causing her high temperatures and general fatigue issues.  Typically, her temperature was down at normal at that consult - for the first time in days - and she chattered away happily to him, so we were both deceived into hoping that she was on the mend.  Despite me knowing that if I'd taken her to the children's ward first thing that morning, she'd have been admitted!  It's THAT difficult to tell when she's really ill or not, "just" from not feeling pain.  The GP gave me a different antibiotic from the previous ones she'd had repeatedly since January, and we went home.  She immediately threw up the new antibiotics, and her temperature started climbing again.

Next morning (her birthday!), I hoped to find that her temperature had come down again, and that we could at least make it through her planned 'bowling' birthday party.  Instead, I found a very pale little girl, with blue lips, who initially started off asking if she could still have her party ... then very quickly started begging to "just go to hospital instead!"  :'(  I tried giving her the antibiotic again, to see if she could keep it down, but she threw it up again.  And I had no choice but to hastily inform everyone that the party was cancelled (after just having let everyone know the night before that I had antibiotics for her, so we could go ahead!), and phoning the ward directly.  Took her straight up, and - by the time we got there - her temperature had shot up to over 41C!  And her elbow had started swelling and turning red again.  So at least we now had a 'source' of infection.  She was immediately put on IV antibiotics, and had bloods taken, so they could determine what sort of bugs she was fighting.  And came back with the news that the infection level in her blood was ridiculously high.  My poor girl had septicaemia!!  The elbow infection hadn't resolved at all, and had developed into a ball of pus, in her elbow.  Which obviously should have been excruciating painful!  But she had no clue there was anything wrong with her, until it got to the point where her body was toxic.  And even then, she didn't know WHAT was wrong with her, just that she "didn't feel well."

After getting blood culture results back, and determining what antibiotics she needed, I was told that she'd need to have a minimum 2 WEEK course of IV antibiotics, therefore we'd need to stay for that long.  I was a bit stunned by that news, we've never stayed that long in any one period before, but at the point where I needed rid of this infection, once and for all!  (Not that it would have mattered how I felt, we'd still have been staying anyway - she needed it!)  And so that's where we spent her 6th birthday, and the following 2 weeks.  :(  She was so poorly on her birthday though, that she didn't really care much.  And I'm thankful that I did take her in then, because she had a very scary 'rigor' episode the following morning.  I'd literally just asked the nurse to take her temperature, because she was shivering again and saying she didn't feel well - the symptoms she'd only shown when her body temperature was above 40C - and it was only 38C at that point - but she went to get some ibuprofen to try and prevent it going up further.  In that 5 minutes, it shot up to 41C!  Her temperature went up so quickly that her body tried to compensate, and started shutting off the blood supply to all her extremities, and everything started turning blue!  She said she was going to be sick, started gasping, collapsed, and then her fingernails, fingers, lips, face, etc started turning blue ... and she was suddenly gasping for breath.  The nurse walked through the door, just as I was trying to deal with this, and keep Alyssa calm, and pulled the emergency button.  The crash team (what seemed like a zillion nurses and doctors) filled the room, got her on oxygen, and fired another IV cannula into her, all the while telling her - like I was - to stay calm, because her panic was making it all worse.  Thankfully, within a few minutes, she began turning the 'proper' colour again, and the gasping for breath was easing.  And I could tell from the doctors' and nurses' faces, that they were just as shocked as I was, that it had happened.  And she was promptly moved to a room nearer the nurses' station, just in case it happened again.  They were also VERY pro-active in keeping her temperature down, even if it rose just a little bit, so they could prevenet another episode.  Alyssa really does look "so well" even when she's seriously ill.  It's a constant battle we face, each time we see a doctor who doesn't know her.  

She has recovered pretty well from it all now, I'm pleased to say.  She was thoroughly spoiled by everyone in the ward, for her birthday, and the days that followed.  And she not only received a ton of birthday presents, but also "get well soon" ones, so we practically needed another house to keep them all in, by the time we returned home - to 3 very unimpressed cats!  They had fortunately been looked after by one of our very lovely neighbours, so they were well-fed, but still put-out that we'd been away so long.  I think they believed we'd been away on holiday!  ;-)  And Alyssa was very pleased to see them (and Maximus, the hamster!) because she'd missed them too.  She's still on antibiotics now, just to try and make sure that the infection rids/has rid her body fully, this time.  But it means that the scheduled spinal surgery was immediately cancelled - before it was even apparent exactly how ill she was!  They could take no chances of the infection she had in her bloodstream, getting into her bone.  There is already a significant risk of bone infection, with her not feeling pain, and not knowing if she's managed to do something to it, under the cast.  So to attempt surgery with even a minor infection, would just be crazy.  I am liasing with the spinal nurse weekly about Alyssa's progress, so we can attempt to set another date for it, as it is obviously not something we want to put off for too long.  The one major benefit we had of discovering it when we did, was that it had not progressed too much from the previous year, and we could prevent it getting any worse.  The spinal surgeon had contemplated the end of May at one point (which is when her current antibiotics are due to finish) but he hadn't realised that some of those antibiotics were to be prophylactic in nature ie preventative, rather than 'treatment.'  Her dermatologist was not prepared to take any chances as far as the recurring infection, but had also already planned to put Alyssa on prophylactic antibiotics for her time in the body cast anyway.  So this was her being pro-active in view of the upcoming surgery, and she said she would just alter the antibiotic choices, as necessary.  However, this was also before we discovered that Alyssa is also now anaemic, possibly as a result of the severe infection, but that will likely prolong her recovery period.  So at this point, I have no idea when the surgery will now go ahead.  And I will update - as usual - when I can.