Posts Tagged ‘getting ready for discharge’
I can hardly believe we have been in this place for six weeks.
Some days roll over so quickly and others drag.
Some are better than others.
Some days are full of laughter and others there are lots of tears.
The nurses and the paed are our constants.
Ivy is doing so much better -
her refeeding has been reduced to just overnight now,
to see if she will gain an appetite
and be able to hold her own with her electrolytes
and she is taking in small amounts, doing all the right things.
Her white cell counts are coming back down too.
We are in a strange place at the moment.
Not quite ready to go home but well enough to dream of it.
The various doctors now in discussion as to whether we can keep
Ivy’s hickmans line in or not, considering the fungal infection
and the fact that her neutrophils are not in a good position to fight.
The immunologist is adamant that it come out.
She won’t enter into any other discussion about it.
I’m not sure how I feel about her opinion on anything regarding Ivy at all,
considering how her last plan turned out.
The infectious diseases doctor and the paed are at least willing to listen
and think fully about the consequences of taking out the line.
What happens if we take it out and then Ivy becomes acutely unwell again?
Where do we go from there?
I know that we all hope that there will never be a next time
but in all honesty, I think that is being overly optimistic.
Personally, I would like to at least attempt to salvage that access point,
seeing as there is nothing else available to Ivy.
There has to be a way to work through this without more surgery.
There just has to.
Tomorrow is IVIG day again and yes, I am nervous
but the small girl is in a much better place than she was 21 days ago
so I am hoping for a fairly smooth infusion and post infusion day.
Our nurse has worked tirelessly today to ensure that Ivy gets
everything she needs to make it so.
Word on the street is that we will be able to have some gate leave
come the weekend
and the slow push to get us home at least overnight has started,
with daily return to the hospital for medication and tests.
It will be a long road to recovery, I think
and the paed is being super cautious with the girl
(which is good and I am really happy about).
To think three weeks ago I thought that she was not going to
make it out alive,
she was just *that* ill,
to today, where we are planning for discharge,
I know we have all come a very long way indeed.