I went home from the hospital with something called a PICC
line. (In fancy doctor terms it stands for a peripherally inserted central
catheter. You’re welcome.) The best way I can describe it is similar to an IV
you would get in your arm except it is inserted into your arm and the line goes
into the main vein near your heart. A PICC line is where they can give you nutrients,
medicines and draw blood labs. We inject vitamins into them every night. They use this instead of a regular IV if the
person will need this more long term. Because I am not eating enough to sustain
me, I get my daily nutrients from this line every night. Around 8:00 I hook
myself up to a big bag of medicine that runs for 14 hours. This gives me all
the nutrients and vitamins to keep me going. I think it is rather amazing that a
bag of what looks like water can keep a person alive. Thank goodness for modern
medicine!
At first it was hard to be hooked up to something all night.
I felt limited and tethered to my bag. It was hard to carry around and also
sleep with a tube on me all night. However, as time has gone on I rarely even
notice it. Peyton has always encouraged me to not let the TPN (the bag of
nutrients) hold me back and limit my lifestyle. We got a backpack to hold my
medicine and that has been so helpful. I hook that thing up, strap it to my
back and I am good to go. I have taken it to Samantha’s soccer games, church,
the movies, the store, etc. A lot of people are surprised that they don’t even
notice that it is not just a regular backpack.
When I came home from the hospital I was on limited foods
and eating applesauce, chicken broth, crystal lite, and very small bits of
“approved foods” like really moist chicken, and lactose free yogurt. I was very
nervous about how my body was going to react to the foods. The small intestines
is the place where the majority of your nutrients, food and vitamins are
absorbed so I was nervous to see what would happen if I didn’t have much of
that piece. I was also receiving tube feeds through a tube in my stomach that
would keep my intestine working.
After I was home for about 2 weeks from the hospital things
went from bad, to worse. I would throw up constantly, all day every day. I felt
awful, depleted and hopeless. I would sleep with a bucket next to my bed
because without fail I would throw up multiple times in the night. I was
running on little energy because whatever my body was eating was coming right
back up. They decided to do a CAT scan and discovered that I have an
obstruction. This is due to more of my small intestines being necrotic. This is
best described as a blockage. Anything I was eating or bile I was secreting had
nowhere else to go. I was admitted back into the hospital for some additional
tests. They administered multiple endoscopies where they put a balloon down my throat,
blow air into it and to try open the obstruction up but after about 3 of those,
they said they were not working and it was too dangerous to keep doing.
I then had a tube
inserted with two bags to drain my small intestines and my stomach. This is NOT
a colostomy bag. It drains bile. Which, you’d be surprised at how much that is!
I still have these attached to my stomach that has required me to be creative
in my clothing. The great part about these two bags is I am not throwing up all
day anymore! The bile now has somewhere to go and it no longer has to come up.
I have felt so much better since they inserted this tube.
( Heres a picture of my two bags. I guess we're at that point in our relationship where I can show you things like this.)
After that hospitalization, I went home where they stopped
my food intake and my tube feeding. I was (and still am) sustained 100% on the
nutrients bag. That’s right, I haven’t eaten anything in almost 5 months. I am
allowed sips of water and chicken broth. This has been by far the hardest part
of my trial. I love cooking and I love food and when I wasn’t able to eat
anymore I mourned that. First of all, you don’t realize how much exposure to
food we have. Everywhere you go you see advertisements for food, every church
gathering, or activity with friends and family involves some sort of eating.
The holidays were obviously the worst. Although Peyton bought me the most
expensive water he could find. I would find myself becoming almost obsessed
with food. I would have Peyton describe how it tastes, I would watch others eat
and tell them in what order they should eat it. At the same time, I have had to
withdrawal myself to situations where my favorite foods are being served or
take a second and regroup when I am having a craving.
I miss textures and
flavors and chewing! With that said, I have been very strong in this whole
process. I don’t say no to activities where there is food and most of the time
I sit down with my family at dinnertime. I’m also a wife and mother so I am
still cooking for my family. I miss date nights that involved restaurants, late
night ice cream treats, and junk food at Disneyworld. I have to remind myself
that this is only temporary.
Savages, I tell you!
My surgeon does not want to go in and remove the obstruction
for about a year. Her reasoning (which I support) is if she were to go in now
so soon after my other surgeries it could compromise the small portion of
healthy intestine that I still have. So right now, for about a year I am giving
my gut a “rest” and not eating food.
I have some great doctors, surgeons and specialists I am
working with. I have a home nurse who comes in once a week to draw labs and
clean my PICC line; I go and visit my specialist in Miami once a month and my
surgeon who did the surgeries have all been a great support. Even my OBGYN who
was watching this all happen, has been a constant support, and we text often. I
feel very fortunate to be surrounded by so many capable health care
professionals.
Before having Preston I had decided to give birth at a well
renowned baby hospital. I called it a baby factory because they just birthed
those babies by the minute. But about a month before everything happened I
decided to try another hospital, which was much smaller but had all the
services a regular hospital would have. I told Peyton at the time I didn’t know
why I chose the smaller hospital, but we went with it. Looking back I know I
was guided by the Lord to choose this hospital because my surgeon had seen a
similar case like this before and if I were to have given birth at the baby
factory I would’ve had to have been transported to the downtown local hospital,
and it was so time sensitive, I don’t know if I would’ve made it. Plus this
allowed me to be close to Preston when he was in the NICU.
Although this is an unfortunate and rather horrifying event,
there have been so many blessings through all of this. I feel grateful to be
alive. Trust your gut (haha, that’s not really funny, is it?) Listen to the
Lord, and he will guide you to where you need to be and with you need to be
with.
The other day I was at the Kennedy Space Center and I was
wearing my backpack. I had to take Preston out because he was getting fussy and
some man yelled out to me. “I see you with your backpack and everything. You’re
a great Mom! You’re doing a good job!” I wanted to fist bump the world at that
moment. I thought to myself, “Heck yes, I am! I am killin it!”” But ya know, I
just humbly said thank you J
I never knew proper strength until I had to be strong. For myself, and for my
babies.
So many people have offered to cook for Peyton, watch
Samantha and Preston for my doctor appointments, drive me places, do my
laundry, etc. I feel so lucky that I have my own cheer squad and tribe looking
out for me.
The next step in my recovery will be my surgery in about 9
months to remove the obstruction. If all goes well I will be on a specific diet
and hopefully be able to wean from the PICC line bag of nutrients. I will then
be given tube feedings and hopefully in the future I will be able to eat enough
things that my body absorbs to keep me healthy without any tubes or lines. I am
hopeful this will happen and I am grateful I am here to endure it with my family.
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