Writing a post has seemed impossible until today.
Things have been difficult to say the very least and when I wrote last week it was just the tip of the renal failure iceberg that we had begun to deal with.
Ivy spiralled into a period where everything that could go wrong did and was so very sick that all she could do was sleep and vomit.
Her urine output dropped to almost nothing.
Scary things like dystonic seizures happened and MRIs of the brain ( thankfully normal)
and huge shifts in her electrolytes which caused her blood pressure to rise and her heart rate to fall into her boots.
In the mean time her peripheral IV access was becoming impossible and cruel almost.
One, sometimes two new cannulas needed in a 24 hour period and numerous attempts in between left Ivy black and blue.
Taking blood twice a day was no better and even the very best phlebotomists had to have more than one attempt.
It was traumatic and sad and just plain awful for the girl, who just wanted to be left alone in her misery to sleep.
She became drowsy and hard to wake
and we knew that something needed to change because Ivy’s body was unable to keep up any more.
She was flagging.
Her lovely new doctor (who isn’t new anymore and I really should think of a different alias) and the paed started talking about refeeding the girl,
who was beginning to lose muscle and important enzymes as her body literally ate itself to sustain the energy she needed to fight.
Tubes were placed and vomited up and placed and vomited up
and finally it was decided that Ivy would go to theatre to have a subclavian line inserted, a scope and an nj tube placed deep in her bowel, to bypass her stomach
so that refeeding could start.
It was, perhaps, the very low point of this admission so far.
I may have totally lost the plot with a previously unmet gastro doctor and cried the day through.
It might have been a 24 hour pity party.
Our nurses are always so amazing and they were even more so as I snotted and sobbed my way through the thought of putting Ivy through everything
but that everything went well in surgery and the anaesthetist came to me with good news -
that the line, although not in as far as he would have liked, was at least in.
He said, quite seriously;
“there is always that little bit of the ‘Ivy Factor’ that you need to take into consideration”.
The Ivy Factor led that same subclavian line to firstly become blocked and then uncoil itself from the vein less than 24 hours later
and led her potassium to sink to almost ICU worthy levels
and led her heart to start playing up too.
When I write it down it seems seamless and simple but it’s not been at all.
The good news is this:
Ivy’s kidneys are beginning to work properly again.
Her blood pressure is starting to be controlled with the addition of medication.
A new central line was placed by the kind surgeon on Saturday and
even though it too became blocked about four hours after our return to the ward,
our first bit of good luck was that after much pushing and pulling, sighing and cursing, the damn thing promptly gave in and started to work again.
Ivy is having more and more awake time and happy days where she can play with her brothers and sisters.
Refeeding has started and even though it is slow going there, we are making progress.
It is a slow but steady process.
Ivy’s team have been wonderful
and forgiving of my outbursts
and I really could not ask for better for the small girl – Ivy factor and all.
Dedicated to our gorgeous nurses that read here – who understand the Ivy factor very well.