They did it together. Being hospitalized as brother and
sister who share the same disease. Orson and Maelee. Maelee the big sister who
had done this type of hospitalization before began from the start to be
protective and ever the teacher to her younger brother. He needed her support
and she gave it. As a mother who sees their relationship I was grateful for
this turn in the tide as the two usually have the hardest time getting along
together. But her mother heart wrapped around him and she did everything she
could to comfort and help him while at the same time getting through the
hospital stay herself. Maybe it was a good distraction for her.
When Orson was told that he would need to fast to be
prepared for his PICC placement and bronchoscopy Maelee quietly told me that
she would fast as well. She didn’t want Orson to be sad seeing her eat. So we
all fasted and waited. I was there alone with the kids so my husband could get
at least a half day of work in. My younger brother came for a visit that
morning. He was also a welcome and lovely distraction from the waiting, because
that is what the hospital is, waiting. That day we were waiting for Orson to
have his PICC placed and bronchoscopy under anesthesia scheduled for noon, and
also waiting for Maelee to be called in by the PICC team to place her line in
the procedure room on the same floor we were staying in.
The kids received lots of instruction and explanation on
what a PICC was and how they would have them put in. This was done by a
cheerful and kind Child Life Specialist named Kylee who was absolutely
incredible at her job. I was worried that the procedures for both kids would
collide and I would not be able to be with one of them. They pulled Maelee back
into the procedure room, just a few doors down from where they were staying. Orson
was so scared for his anesthesia, he hates everything about anesthesia and he
knew it was getting close to when he would have to do it so he was hesitant to
watch me walk down the hall with Maelee but he told me to go with her.
She was really being taken such good care of by a room full
of capable and kind women. They were all so upbeat and caring. Kylee was right
at Maelee’s head all masked and gowned so she could be so close to her. She
told me she would stay with her throughout the whole procedure so that I could
go with Orson if need be. Maelee was extremely brave and was doing so well but
I could hear the fear still right on the edge of her voice. Orson’s nurse came
in at that time to let me know it was getting close to Orson’s time for
preparation downstairs. I told Maelee I was leaving for a minute and ran as
fast as I could down the hallway because I knew he’d be upset waiting for me.
He was balled up in the corner of the room crying. He had
just tried to escape the room running down the hall looking for me as soon as
the nurse told him it was time to change into a gown for the procedure. He got
scolded for leaving the room and was sitting holding his procedure gown crying
as far away from the nurse as he could get. I calmed him down and helped him
prepare and then ran back down the hall to let Maelee know I was leaving with
Orson and thanked Kylee for being so generous with her time and staying right
by Maelee.
Orson was absolutely inconsolable. Any time that he could
remember anesthesia had either lead to him waking up with a plastic straw
sticking out of his stomach that still hadn’t been removed three years later or
vomiting blood for hours after waking up. On top of that the idea of being
forced to sleep makes him angry and feeling powerless to stop it. So when
transport arrived to wheel his bed to the OR he wailed the whole way there. I
don’t blame him. He sobbed and cried out in frustration literally every second
until the mysterious vile chemicals of anesthesia commanded his body to stop.
It was torture for him and torture for me. The child life specialist on the
floor there convinced the anesthesiologist to let me go back into the OR with
him while they put him under so he wouldn’t have to be alone. It was the first
time I had been allowed to go beyond the usual “goodbye doors.” I tried to
comfort him throughout this process. He asked to pray together so we did that a
couple of times. I tried to absorb all of his emotional pain but there was so
much I wasn’t enough of a sponge. I watched them plunge (the nurse didn’t go
slow he was trying to get this kid to stop screaming) the milky concoction
through Orson’s IV while Orson screamed that it was burning and I wanted to
punch all of the men in the room (there wasn’t any women in there which for
some reason also made me furious that it was all men). As I watched him
instantly go limp after screaming the previous hour all I could do was give his
hand a kiss and be lead away to wait. It wasn’t supposed to take as long as it
did but between waiting on the pulmonologist to arrive, finish, and complete
the bronchoscopy and then trying to find a vein large enough to PICC Orson it
took twice as long as they said it would. One of Orson’s issues with anesthesia
is the moments he’s alone in recovery and waking up without me. Because of this
I was pacing getting more worked up and more worked up with each minute. Oh and we had a fun surprise right before we got hospitalized, our insurance deductible that had been met days after January 1st of this year got mistakenly reset unbeknownst to us July 1st (still trying to clean that mess up) so I was fielding calls about medicine during this anesthesia prep time.
In the
mean time Frank came to the hospital from work and was with Maelee so at least
she wasn’t alone anymore. Finally when the nurse came back to get me I just
lost it. I wasn’t crying yet but I was so upset I couldn’t complete a sentence
just spewing angry half sentences like the wind was knocked out of me. Then
when I got to him he was already awake which then made me start to cry with him
because his fear came true and he had woken up alone. I couldn’t describe to
the nurse how deeply upset I was. I was so disappointed that I had let him down
and felt so helpless as I watched him again get so sad and disoriented watching
him live his dread. It was a small procedure. I understand that. But every time
he goes under it feels like reliving all the trauma. The devastation and pain
he felt as he sobbed in my arms so confused and hurting after g-tube placement
surgery, and the feeling of catching a bowling ball in his nose and throat and
then repeatedly vomiting blood after his surgery in December of 2017 all those
memories just hang in the air around us and its awful. Its difficult not to
feel like its your fault as a parent when your child is in pain. Surely there
was something you could have done to stop this or fix it but you failed and now
your child is in their pit of despair and you have to slowly and carefully do
anything you can to coax them out of it.
Then PICC day was over and we had rainbows of visitors everyday
to go with the waiting. Waiting for each doctor to come in and give us a two to
five hundred dollar handshake everyday, and IV’s to run, four vest treatments a
day, and trying to convince the kids to eat.
Maelee has never struggled eating well, but Orson has
struggled with eating enough food to sustain life since birth. This bothered
many of his nurses who would pepper him and then Frank or I whoever was in the
room with questions of why he didn’t eat more. This would make him cry. He did
find a way to successfully get his blood glucose measured. When the nurse would
come to check his sugar he would call for the parent in the room to come and
hold his ears to block the sound of the little machine. He didn’t mind the poke
so much or seeing the blood even but the sound of the machine was very grating
to him. Good news though his numbers looked swell so they stopped checking
after a few days.
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| The picture we took before I drove Maelee and Orson to be admitted to the hospital. |
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| The picture we took when I came to switch places with Frank the night of the day my friend had brought Charles to spend the day visiting his siblings. |
We switched parent schedules on the weekend when Frank wasn’t
having to go into work. He slept at the hospital with the kids on Friday and
Saturday night. Which gave me the chance to be the one at home waiting. What
was special about it was that because of how the visit played out Frank and I
both had alone time with each of the kids at one point or another to express
our love, spend time with, and listen to them. Charles and I stayed up later
than usual working on a puzzle and with Charles legos are always involved so
that was fun too. Ruby and I randomly got cauliflower soup from Zupa’s on her
request. I have to admit I was dreading church on Sunday. I felt so fragile and
tired and I didn’t want to get into in depth conversations about the hospital because
I was worried it would make me cry. But we went to church anyhow. Myself,
Charles, and Ruby and once I got through sacrament meeting and into my primary
class and sat with my CTR 7 class the most comforting feeling of love stayed
with me the whole time. I forget how it came up but each of the 7 year olds in
the room started asking me questions about the kids in the hospital. But it was
so sweet, kind, and innocent that it was easy to talk about with them. Then
without being asked during the opening and closing prayer my primary kids
prayed by name for each of my children. I felt so loved.
After church waiting for news from Frank was killing me. The
kids had a lung function test to do scheduled for noon, then they would hear
from our pulmonologist and she would let us know if we could come home that day
or Monday or Tuesday. Then I started getting calls from the home health care
company who would be supplying us with our home IV supplies and nurse visits. I
started to panic thinking about being responsible for running two IV schedules.
So I did what seemed the most natural and beautiful thing a mother could do on
a Sunday afternoon. I baked cookies. These are spectacular cookies by the way (Neiman
Marcus cookies from that ancient e-mail forward years ago – a family favorite!)
that I knew I would have to resist eating two dozen of in thirty seconds because
that’s what Kamarah last year would have done, but Kamarah this year has lost
55 pounds and is going for 15 more. But I baked anyway because the process itself
was what I needed that day not the eating. It worked. Baking made me feel
better and more like a regular mother and not a mother waiting for IV meds to
be delivered.
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| The IV and vest schedule I wrote out to keep things straight. |
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| The most exciting grocery store trip ever. |
When they came home
we ran their IV’s through their PICC’s and it was fine. It was hectic and touch
and go for sleep but we got through each day hunkered down happy to be home and
not stuck in the hospital room anymore with insanely expensive handshakes from
doctors and nurses breathing down our necks. Maelee was so concerned with us having
to get to her arm in the middle of the night for IV changes that she would
sleep in a very specific thoughtful way with her PICC arm laid nicely on her
pillow. The day after we came home we needed to go to the grocery store to
replenish the necessities. Both Maelee and Orson practically raced us to the
car when we asked if they wanted to go and walked around in Fry’s like it was
the bright lights of Paris so happy to be somewhere besides room 320. It was
comical and fun to watch them be appreciative of home life.
Now our goal is to ring out the towel of summer for the next
few days. It’s that special nostalgic time of year for me when I get sad
thinking about having the summer be over and the kids gone but I also want to
do a cartwheel because school starting means the expectations of Mom performing
entertaining magical experiences stops as well. Cheers to a long and lovely
break before our next hospitalization.
Neiman Marcus Cookies
1 cup butter
1 cup butter flavored shortening
2 teaspoons soda
2 cups white sugar
5 cups oatmeal
24 ounces chocolate chips
2 cups brown sugar
1 teaspoon salt
1 - 8 ounce Hershey bar cut into pieces
4 eggs
2 teaspoons baking powder
2 teaspoons vanilla
(9 minutes in 360 degree oven or when slightly browned on
top)
PS - Having your insurance deductible reset and then trying to convince people it was a mistake and your deductible has indeed been met is what I can imagine would be similar to sitting in a maximum security prison and trying to convince everyone your innocent. No no no I realize the prison scenario is much worse but its pretty ridiculous none the less.
I am in tears and in awe.
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