Part Two of Palliative Care was about the rollercoaster
ride of J3s first month in the hospital. The story began with failure to
thrive. Continued to the DKS procedure with a follow up of oxygenation issues.
And explorative surgery landed him on a bypass machine. Despite all of that
Part Two ended well.
The next five days moved remarkably fast. J3s chest was
closed. He was taken off his ventilator. His Foley was removed. His arterial
line was removed. He was breathing 21% oxygen, so they wean his pressure until
he came off oxygen completely. They removed an RA line and prepped to remove
the other the next day. Also, and most important to me, I got to hold him. When
he finally realized what was going on, he started to smile and coo. It was an
amazing feeling.
After a month of being in the hospital, J1 and J2 are
coming to visit me. We had an amazing weekend at the zoo and other children friendly
places. While it was sad to see them leave. I was rewarded with the most
amazing gift. J3 was being downgraded from ICU to intermediate care. I get to
room with him again. I get to hold him again. I get to be responsible for his
care again.
The doctor informed me that the real work will now begin
…
As if what we have been through hasn’t been hard enough.
What the doctor meant by real work was that J3 had to
learn how to eat, a skill that most people take for granted. J3 quickly became physically
exhausted after five milliliters of formula. Building him up to drink four
hundred milliliters, which was the minimum limit for his release, was tedious
and time consuming.
J3s feedings were every three hours. I was supposed to
feed him for fifteen minutes as much as he could imbibe and repeat the process.
For two weeks, I warmed his formula. Measured every milliliter he drank. Prayed
that he gained weight. For two weeks, I slept thirty minutes every three hours
if he would sleep long enough for me to sleep. After a week of this I locked
myself in the bathroom and cried while J3 screamed angrily ten feet from me.
The nurse came in once I emerged and ordered me out of the room for an hour. I
was able to eat a hot meal for the first time in a week. After a week of
prayers, he started gaining weight and eating just enough for the doctors to
release him.
Finally, after seven weeks of being apart from my family
we were together again. We lived month to month waiting to return to the
hospital for his next stage of surgeries. It came in April, right after Easter.
Honestly, I can’t remember much about that stay. I remember the surgery went
well. I remember he didn’t suffer as badly as they had expected. I remember
returning home with a happy semi-healthy child within the week they had told us
even though I had prepared to be there longer. I remember being home for four
or five months before the unexpected happened and we were back at the hospital.
But that is another story.
I will say that I
walked out of this experience with a deeper faith and trust in God. Even during
some of my darkest days since then I cannot look at J3 without being reminded
that I am blessed.
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