This second surgery really wiped me
out. I go into every surgery as strong as possible physically, mentally,
emotionally. An emergency surgery left me no time to prepare, plus I was
already physically weak from the prior surgery, difficulty eating, infection,
etc. It took work to try to find the positive. it took work to choose to smile.
Once I realized how close of a call I'd had, I was grateful to be alive,
grateful to be well cared for. I knew no one wanted what had happened to
happen, that all were trying to help me get well, that all were rooting for me
to go home ASAP, and hopefully in time for Christmas. My surgeon was super
strict one morning about the compression stockings. We explained I had pressure
sores starting. It turns out that was the morning my platelet count spiked
critically high. We found a compromise of using the calf compression sleeves,
but no compression stockings.
I was certainly deemed complex.
Apparently healthy looking when admitted initially, but prone to pressure
ulcers, struggle to recover from first surgery, need second surgery, struggle
to recover from second surgery, etc. White count very high, platelet count very
high, heart rate high. Cardiology and hematology called in.
After the second surgery, I
struggled more with back pain, neck pain, and shoulder pain. Physical therapist
was there to help take me for walks, but he helped problem solve positioning
for me to try to relieve the other pain. Through trial and error, figured out
how to sort of mimic cross between my zero gravity chair and my pillow nest in
my bed at home. That helped. It was still very hard to sleep. However, more
than one nurse commented on how comfortable my "nest" looked.
Progress was counted by removal of
tubes. The one I was most excited to get rid of was the NG tube. I had started
gagging on it for no reason by the time it was pulled. Removal was not fun, but
so glad to have it gone. It still sort of felt like it was there for another
day or so. I was not really claustrophobic, but had gotten so I did not want
any face tubes snug, kept loosening oxygen and CO2 lines. This was partly
because of nausea that was severe at times and anything close to my neck or
nose/mouth made things worse. In fact, some nurses let me have a break from the
CO2 tube when nausea was at its worst. The last lines to go were the IV
nutrition, IV antibiotics, and I think one other. Then, I was finally allowed
up by myself! I could take myself to the bathroom without help! I could take
myself for walks in the hallway by myself! My nurse said she did not care where
I went as long as I stayed on the floor and out of the critical section of ICU.
(I was in a step-down ICU, but all of ICU was the same floor).
The recent events may seem like not
much good happened. However, I am alive, had excellent care. My family was
supportive and kept me going on days when I wanted to give up. I also had the
opportunity to educate various other providers on EDS and mast cell activation
syndrome. Although, one evening at shift change, when the day nurse was
explaining to the incoming night nurse what was going on with me (lengthy
process). The night nurse asked me what type of EDS I had. Most asked what EDS
is, are not aware there are multiple types. So, I knew she knew more. It turns
out she has a child with EDS.
Something else I learned. I may be
a dietitian, trained in nutrition, know in theory how to advance diet post-op
GI surgeries. However, that does not mean all bodies respond well to standard
protocol, and mine certainly did not. Plus, it is impossible to be fully
objective with oneself. Also, if sugar, artificial sweeteners are recommend
against early post-op, then why do the standard supplements used right after surgery
contain so much sugar, or other suspicious ingredients? I avoided the
supplements after second surgery as I was afraid of them after what happened
after first surgery and trying to use them to keep protein intake up. It helped
I was on IV nutrition for second surgery, thus had less pressure to rush
advancing diet. Also, one of the most helpful pieces of advice I was given
early in trying to start eating post-op second surgery was by my surgeon. He
said if it sounded good, try. As crazy as it sounds, the first thing that
actually sounded good was tomato soup. This is also the first food I
successfully kept down. So, it became my "safe" food that I ordered
every meal in addition to whatever I was trying next. Mashed potatoes were
another early "safe" food. I tend to come from an intuitive eating
perspective, but also science-based. These often go together, but not always.
Tomato soup did not really make sense as a good first food, but intuitively, it
worked. I also learned that one can pick and choose off of a hospital menu.
Just because an entrée comes with specific sides per the menu, does not mean
one has to have those sides. I did a lot of substituting. Otherwise, I was
leaving a lot uneaten that I was not ready to try yet.
This whole situation was quite the
learning experience and I suspect will continue to be for a while. I am
grateful to be home, to be sleeping better, no more blood sugar checks, insulin
injections, lab draws, Lovenox injections, etc. I am still thin, weak, tired. I
have a lot of healing and recovery ahead of me. It is hard to be patient.
Eating, walking, self-care are tedious, tiring. But, these are my tasks for
now. I have regained strength, weight, and muscle after other surgeries. With
these surgeries, the loss is more global, but I can regain again, even if it
takes longer. I am choosing to move forward with hope. Hope that recovery goes
well, hope that these surgeries give some amount of relief.
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