Again bits from another sites posts from mid January to date.
We have now been told our only realistic chance of survival is heart transplant...........
being assesed by great ormond street next week.
From what seemed like the end to
Hes off the ventilator and on CPAP!!!!!! We agreed to try him provided they were sure they could reintubabte if needed very fast a brill constultant did it and we are just using positibe pressure now.
He is very certainly living by his own rules.
Waiting to hear from great ormond street
Hes on Oxygen only spent 22 hrs on CPAP so hes breathing on his own!
Met the transplant co ordinator today, we have about twenty four hours to make a choice about wether or not to go to transplant.
think we have decided already really.
So we make appointment tomorrow to go to GOS to speak to the nurse specialists and go from there
Well we are weaning an iv heart drug to get onto an oral one then we are of to a ward, his heart has not improved on echo but is no worse either........
We really need him to be stable and to gain weight he is 3750 from a birth weight of 2460 and is nearly 14 weeks.
We have been told that itu admissions will be a regular thing as he will not remain on the level so to speak for very long at a time.
It is unlikely we will get home before a transplant (that is if we are listed) so we could be in hospital six plus months.
We were prepared for six months in hospital but
Were HOME!!!!!! as in all of us just till thursday then back for a review but hes holding it on the drugs....
Three cheers are needed for my little star I think.......I have also found a world wide forum for parents of Barth boys which is wonderful as I am gaining hints and tips, dont think I will be hitting EASY with this little one due to permenant three hour feed and a hospital type schedule but I am blessed he sleep through, we dont though drugs at 9pm 10pm 11pm 2am 5am......... plus changing sheets in the night he is on water tablets so he wees gallons but is only in size one newborn nappies.
Its odd having a four month old that behaves like a newborn from a movement point of view yet watches you eat and babbles I forget he is four months old and not a new born at times. We hope to start physio soon to help his muscle tone.
Then he collapsed again...
Well we are back in London in PICU hes got flu and being a man well you know, seriously though hes ventilated again very hot and not happy, collasped at the local hospital high speed ambulance ride again very sick little man with the normal might not make it comments.
We had a few days on the vent' then onto oxygen
We need to get him off oxygen before we can get home........if not home with oxygen via the local hospital and as they do not have a good track record with Joe so far so I do not want to go back. Arghhhhhhh
It looks like we are going to the local with oxygen and knowing there track record at not arranging things we will be there at least a month more like two as they really find it impossible to arrange anything and our consultant team cant intervene at a local level
At the local huge problems as usual massive complaint and lots of stress.
Apparently my baby doesnt have a heart problem at all its his lungs at fault and he will always be on oxygen
Since when? funny that doctors doing a reaseach project in lung disease in the under 2s isnt it what an idoit.
Give me dont strangle the staff vibes please and keep smiling vibes
Then finally
:)We Are Home!
We got home at twenty to six this evening with Joe on home oxygen hes sleeping all okay at the moment
The he did this
I have now told my little man any more antics and hes going on e bay....(only kidding) We got home on monday night okay tuesday we went as a day case to the london childrens hospital to have his heart drugs increased and guess what my little munchkin did spiked a temp a dropped his white blood cells we got home last night after three days of IV antibiotics.
Being at home for only twelve hours must be a record.......
Well its now mid april and we have been home three whole weeks, the longest since he was born and he is six months old on Monday.
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6 comments:
what a rollercoaster ride your little man is giving you - so very pleased to hear a positive update though, have been checking every day and thinking of you loads.
Not had a chance to travel the blogring for such a long time but goodness, what a time you have had.
Huge hugs and positive thoughts for you all.
lots of hugs from here as well. can't imagine what you are going through, but think it must be really stressful.
Gosh, it sounds like a absolute nightmare. I hope he continues to do well and they decide on a diagnosis and a treatment asap. Big hugs.
Your head must be spinning with all of the ups and downs. Thinking of you and hoping that calmer, more positive times lie ahead.
What an emotional turmoil you must all be in. I hope Joe Joe is still doing well and getting stronger by the day. I hope that the doctors will find something so Joe can live healthily and comfortably.
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