Hooray!

My daughter come home Tuesday evening and slept for 10 hours.  She didn't stop smiling yesterday, so happy to be back.  She's on a stackful of meds for the next few weeks, but so far so good, she is breathing normally, is the right colour, and is carrying on like nothing happened.  Thank God for the NHS!

Hospital...

 On 18th April, my daughter was taken in to hospital again as her condition deteriorated.  After a barrage of tests yet again - ECG, CT scan, X-ray, bloods, and an echiocardiogram - there followed the most frightening 24 hours of my life as we were told she had either a hole in the heart, a blood clot on the lungs, as well as the lung inflammation, and it was potentially life-threatening.  Her oxygen levels were seriously low and her breathing fast and very shallow.

After a dreadful night in the respiratory ward watching her struggle to breath(sleeping in a chair when you are freaking out is nigh on impossible) my daughter  was moved upstairs to a more specialised ward where the prognosis was not quite so bad.  Her test results had been sent to the Royal Brompton hospital in London and the diagnosis received back from them was that there was nothing wrong with her heart other than the strain of dealing with the lung inflammation.  The CT scan showed she did not have a clot on her lungs.  So that left the lung inflammation - they still do not know the cause of it.  We were asked if she had been exposed to anything unusual such as chemicals, building work, new pets, to which the answer was no, not to my knowledge.

She has been treated with strong antibiotics, oxygen, and for the past 3 days steroids.  The turning point came 24 hours after the first steroid dose - she slept for 9 hours straight and she began to perk up and her oxygen levels rise.  After sleeping on a mattress on the floor for 2 nights, Friday night I managed to go home for a much needed shower and some sleep.  Yesterday morning we turned up as she was eating a large breakfast and dancing along to the music onthe radio with one of the nurses.  By the late afternoon, she had finally got our of bed to walk to the toilet by herself (she had been bedbound, hooked up to machinery,  and had the indignity of wearing nappies and using a bedpan, which caused her extreme embarrassment and distress) and was then able to sit in a chair to eat her dinner and watch a dvd. We've been told when she can manage without being attached to oxygen, she can come home, hopefully within a few days.

I still have a ream of questions for our GP surgery regarding the run up to this - why did no-one take me seriously about her cough?  I also am in the middle of  researching into whether or not the fact there has been a sewage leak into our waterways (that I only found out about yesterday) might have some connection.

Looking forward to seeing her this morning - will she be tap dancing down the corridor?

A Tough Week...

I have not been able to do much crafting over the past couple of weeks.  My daughter, who has Downs, has had a persistant cough since before Christmas.  We both had colds and both were left with an annoying cough that just would not shift.

I contacted our doctor's surgery on many occasions about my daughter's cough - she has always been healthy despite her condition - and was initially told as it was probably viral, it would go away on it's own after a few weeks, no need for antibiotics.  At her annual health check in February our GP was unavailable so we saw a practioner.  She had her chest examined and sent for a chest x-ray which came back clear.  I was told it would probably clear up on it's own, no need for antibiotics.  

Next, as my own cough was also not clearing, I submitted an e-consult and we were given an appointment to see a locum as yet again our GP was unavailable.  The locum examined me but did not even look at Stacie.  We were both prescribed anti-inflammatory inhalers - no antibiotics.

A couple of weeks ago after Stacie had a dreadful coughing fit one morning (one of many, the cough was not getting any better with the inhaler) I submitted yet another e-consult.  This took me two days as apparently by 10 a.m. the surgery had reached it's full quota for the day and would not accept any further emails.  We got an appointment to actually see our own GP!  She examined Stacie's chest, called another doctor in to do the same, then informed me they had discovered a small heart murmer and considered her cough to possibly be the result of fluid around the heart.  Odd, Stacie has never had any heart problems despite having Downs - also does not explain why I had the same cough.  So we were given an appointment for the following Monday for her to have an ECG. There followed a very worrying weekend.

Last Monday we went for the ECG and when the nurse saw the results, she took them to the on call doctor (our GP was unavailable, surprise, surprise) who said Stacie needed to go to A&E at the local hospital immediately and gave me the paperwork to ensure she would be seen without having to queue.

Upon getting to our local hospital, Stacie was taken in for various tests - she had another ECG, she had another chest x-ray, she had blood taken and a canula inserted into her arm, she had a CT scan, and she had a mega dose of antibiotics via IV.  Considering she has never been to hospital in her life, Stacie was incredible, very calm.  The only time she broke down was when they told us she needed to be admitted overnight for  further antibiotics and monitoring as her x-ray had shown a weird thing they call 'ground glass' - a kind of sparkling effect on every part of her lungs.  I had to stay with her - no way could she be left on her own in a strange place, let alone a ward full of geriatric bronchial patients, half of which had some form of dementia and shouted and howled throughout the night.

Despite the noise, Stacie managed to snag a few hours sleep - I lay with her wide awake and uncomfortable!  In the morning she was given yet more antibiotics and had her vital signs tested for the umpteenth time.  We were told by the consultant that as she was responding so well to the antibiotics, she would be able to go home after having some more blood tests taken.  The opinion was that she had infective bronchiolitis - no mention of any heart problems...funny that.

So we have had a rough week - Stacie is on a double dose of antibiotics for 10 days, which while they are doing a cracking job of getting rid of her cough, have caused her to have diarrhea (thank God I have a Vax...), loss of appetite and a sore mouth.  She also had a fever over the weekend for some unaccountable reason.  I rang the 111 NHS help line, who were great and I got to speak to a doctor within minutes, who put my worries to rest.

Yesterday we went to look around a shop and Stacie wanted to come with us.  She was fine until we came out, whereupon she turned a funny greenish-yellow and nearly keeled over.  We took her back to the car and then home - I think the combination of everything, plus not having eaten anything substantial for three days just became too much for her.

However, she did eat a bit more yesterday and had a good night last night with no coughing, no fever, and no upset tummy.  She has woken up this morning cheerful and has eaten a couple of Weetabix.  I think we might have turned the corner at last.  Three more days of antibiotics, then a follow up visit to the hospital, then hopefully she will be out of the woods.

I have a lot of questions for our surgery when this is all over - why was her cough not taken seriously in the beginning?  Why were antibiotics never given?  This could have been stopped before it escalated to where we are now.  Why was she not examined before being given the inhaler?  Why was it assumed that her heart was the problem when she has absolutely no history of heart problems?  Is it because she has Downs Syndrome she was automatically labelled as having a weak heart?  I feel Stacie has been failed big time - thank goodness the hospital were on the ball.

So that's why I have not had the time or inclination to paint, sew or knit - plus I am exhausted!  The garden did get sorted out though - physical activity helps with the anxiety.  Hopefully normal service will be resumed shortly.