When it rains,
it pours.
It's not pouring yet but I can't help expecting it too.
This is life.
This is struggle.
This is how we survive.
For the third time now,
Liam hasn't tolerated the increase in feeds.
I've been trying to do this increase the GI wanted for weeks.
A little over a month I believe.
But he just can't handle it.
Two nights ago he vomited in his sleep.
I didn't know until morning.
I was scared.
He could have aspirated and died.
Thankfully he has a sat monitor.
All his levels were great so no alarms went off.
But still.
After talking to my husband about it,
we decided we just couldn't risk his health for the increase.
Something had to be sacrificed.
We couldn't really sacrifice the increase.
Yes he's growing and gaining weight,
but it's very slow and we need to bulk him up for winter.
Why?
Because he ALWAYS gets sick in winter.
When he gets sick he looses weight,
and that can be dangerous.
So to give him his best chance,
we decided we had to sacrifice daytime eating by mouth.
We had to increase his day bolus feeds from 1 a day to 4.
Basically every 2 hours starting at 11:30am,
he will get a 4oz bolus.
This means he will most likely eat less by mouth.
But he won't aspirate when he vomits at night,
because his night feed was lowered back down to what he does tolerate.
Yesterday was the first day of this change.
I was scared and worried his stomach wouldn't handle a bolus every 2 hours.
I was happily surprised that he tolerated the change perfectly.
He still even ate a little bit in between feeds.
I tried really hard to find the bright side in this.
I was upset because I felt all the progress we made in eating,
would be lost.
I felt we'd have to start all over again.
I felt desperate and lost.
It was hard and tiring to get where we are today,
even though he doesn't each much,
it's still more than he's ever eaten.
I had thought I could see the end to tube feeds in our future.
But now I felt like there wasn't a future that didn't include a tube.
It took lots of deep breaths and searching to find the bright side.
But I did.
Even if this new regiment last's for months,
through winter,
it just may help us.
His stomach will get used to having food,
large amounts of it,
so when we decide to get rid of those feeds,
he just might eat more.
That's what I'm telling myself anyway.
Sure it didn't work the last time we tried,
but he was really young and didn't like things in his mouth.
Now he knows what food is and likes it.
I am grasping onto this concept,
this idea that it could all work out.
It's my lifesaver in this stormy sea.
On top of the tolerance issue,
Liam has a Gtube infection.
The stoma is pretty bad.
This is one of the worst infections I've seen yet.
We will get it to go away though.
We always do.
Because that's what we do,
we overcome,
we survive.
That's the only life we know now.
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