It has been a long time, a long time. I become a
contributor with and have had a couple of articles be shared by The Mighty on
platforms like Yahoo! Lifestyle. My published works "When Children Ask What's 'Wrong' With My Daughter Who Has
Cerebral Palsy" and "How Back to School Is Different for Families of Kids With
Disabilities" have been widely shared. Kerstin and I were
featured on the cover of Montgomery Parents (Now River Region Parents) magazine
where I was interviewed for the monthly Mom-To-Mom article. The photo
shoot we had for the magazine cover blew my daughter's mind. She was a
diva for days following. Then at the Special Needs Expo hosted by the
magazine, Kerstin got the "royal treatment" and "celebrity
status". Really big 'diva-tude'!
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| Hot off the presses! Kerstin's a cover girl...so is her momma |
It
has not been all smooth sailing. As I am writing now, I am thinking about
an appointment I skipped out on for Kerstin today because of exhaustion; physically,
emotionally, and mentally. It is not easy or cheap to take that 2-hour
trip several times per month to various appointments at Children's. This
would be the third appointment since she was discharged on October 1st.
Discharged? Yes! Now, let’s go back to the last full week of September,
the week following the Expo hosted by Montgomery Parents Magazine.
Expo
day! Turns out the weather was not too hot; Kerstin was in a good mood;
heading to work with mommy and gain some praises for being the celebrity cover
girl. Things went well. Kerstin even managed to get a Target run in
that beautiful Saturday. I made a few connections through my work, got to
meet many families like our own; those raising a child or youth with a special
health care need. She had just completed a round of a steroid burst 5
days prior and seemed to have been feeling better. The weekend was
almost over and late that Sunday night Kerstin was not feeling well
again.
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| At work with her momma |
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| Cover girl and Aunt Audrey |
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| Cover girl with Guardian Angel Carol |
I
am still giving Kerstin her breathing treatments; I mean I am taking her puffs
with her wherever she goes. I made sure to follow the schedule with the
bursts she had just completed and continuing to follow her daily medicine
regimen. Why was she not feeling well again? By Wednesday, Kerstin
was not feeling well at all! It was scary. I sent my sisters a
message letting them know that she was not feeling well at all. My
youngest sister Joan is a nurse and immediately she asked me to relay to her
what was going on, asking how Kerstin looked. She commanded that I get a
video of Kerstin to her ASAP. She called after getting the video saying
call her doctors but take her to an ED (emergency department) right then!
She asked what location I was going to and that she was coming as soon as she
got her kids from school. Another sister, Regina, left work early and
said she was going to ride with us.
In
this video, Kerstin had nasal flaring, and her chest was caving with each
breath. We got to the ED and in no time they had her in back, IV started,
labs cultures and so all going and even ordered an X-ray. Shortly after,
the doctor came in to tell me that she was going to have to admit Kerstin
because she had pneumonia. When I tell you all that it seemed like
so much was coming at me all at once. yet, the staff at this ED was so
patient and caring. The doctor asked if I wanted Kerstin to be
transferred to Children's since her doctor and all specialists were in one
location. I said yes, it made since to her and to me. However, since
we were at a smaller ED, they would have to transport her since the IV was in
and she was a difficult stick. It felt like the earth had just
disappeared from beneath me. Transport her? How?
Kerstin
had never been in an ambulance! Her personal vehicles have always transported
her when needed. This could not happen with an IV in her and fluids
going. This warm Wednesday night was a night of firsts. Kerstin was
in the back of an ambulance with an attending medic with me up front with the
other medic on our way to Children's ED. We get there and things move
fast again; more labs, more breathing treatments a clearer X-ray. They
told us that Kerstin would be going to the Pulmonary Unit on the 10th
floor. Though, the respiratory therapist was in the room and seemed to never
leave when he did, he came back with one of the doctors. They said it
would take a little while longer for her room to be prepped in Special
Care! Another first, she has never been in the Special Care
Unit, she spent one night and full day in the PICU after her spinal fusion back in 2013.
The
respiratory therapist working with Kerstin was an older gentleman, he was calm
in his work and explanation of Special Care. He told me that they would
need to start Kerstin on a high flow cannula. What is that? Another
first! Kerstin's O2 levels were barely in the 80s, and she also had high heart
rates. She was struggling to breath but, she was literally giving it her
all. With the high flow oxygen started, doctors and nurses continued
cycling in getting forms completed, medicines entered and all prep for a
hospital stay.
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| Very first time getting IPV |
After
we got up to the Special Care Unit, it was busy all over again. This time
the room was full when she arrived. Nurses were in there with a bed
scale, they had towels, gowns, pillows and linens in place; it was real.
We were going to be here for a while. A new respiratory therapist was
there informing me that Kerstin would be getting breathing treatments and CPT
every three hours! The breathing treatments would alternate between her
getting them through the high flow or this new way...IPV. Another moment
of, "I can't believe that Kerstin is being hooked up to all of these
different machines." The blue hoses took my mind back to the only
other time I had seen them on anyone, my mom right before she passed away in
2015. At that time, she was the only person I had ever seen in person,
intubated and with the now familiar tubing and hoses. This time, my
daughter had them, not intubated but a different form of oxygen and a new
ventilation therapy. This was very hard to ascertain.
What
is High flow cannula oxygen?: High
flow nasal cannula (HFNC) is a relatively new non-invasive ventilation therapy
that seems to be well tolerated in children…Until more evidence from randomized
studies is available, HFNC may be used as a supplementary form of respiratory
support in children, but with a critical approach regarding effect and safety,
particularly when operated outside of a [pediatric] intensive care unit (2016,
NCBI).
What
is Intrapulmonary Percussive Ventilator (IPV)? The intrapulmonary percussive ventilator (IPV) is a pneumatic positive
pressure device used to move mucus.
The IPV sends small, fast bursts of air that open the
airways. These small bursts of air also loosen and free mucus from airway
walls. A continuous mist helps make mucus less sticky. The high flow rate
encourages deep breathing, which helps air to get around and behind trapped
mucus (2019, Cincinnati Children's).
After being settled into the Special Care Unit on this first
night, every three hours of respiratory therapists began. The first round
of IPV was difficult to watch and Kerstin did not like it at all. The bursts
of air being forced into her lungs was unusual. Seeing this process
really highlighted the fact that Kerstin was indeed very ill and having a hard
time simply breathing! Her lungs already restricted from the curve of her
scoliosis curve were now significantly causing her to be uncomfortable and not
breathing well. Kerstin would go on to spend 3 days in Special Care
getting these treatments every 3 hours then eventually every 4 and even come
off oxygen right before being able to move to the Pulmonary Unit.
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| Kerstin sitting up; having a good day in Special Care. Right before the not so good first night in Pulmonary. |
The first night in Pulmonary did not go so well, she had been
doing so good and then suddenly her O2 was low again and she even had to go
back on oxygen but only for a short time. After a few days off oxygen
Missy was able to come home. Her doctor said to continue her breathing
treatments every 4 hours for the next couple of days and then go to as
needed. It had been several days before I had enough nerves to stop
the regimen. When I did, Kerstin was not ready so, it was back to every 4 hours.
Just a few days later we would be back going to Children's
for her follow up with her general medicine and pulmonary doctors.
Pulling into the parking garage, Kerstin's mood instantly changed, I tried to
be reassuring to my love that she was there for 2 appointments and that she
would be going home afterwards. We get in to the first one and during the
check of her vitals she is spiking a temperature but O2 and heart rate numbers
were good. She also had some rattling sounds. Not again! The
doctor we were seeing first mentioned being glad that she would be going to
pulmonary afterwards.
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| No idea we would hear she still wasn't at her best. |
We traverse the campus a couple blocks to the next building
and get checked in with the pulmonologist. They check her vitals again, and I
kid you not, an hour in between the first stop and now, Kerstin's temp has
continued to climb. We get in her exam room and the nurse comes with a
concerned looked on her face and begins her questions and examination which
includes another temp check. They are wanting to give her Tylenol or Motrin
whichever I preferred first. In no time, her doctor is in to examine and listen
to her. He looks concerned! I feel like I want to cry right at that
moment; I know the looks. He tells me that he wants to get some more
X-rays because he was a little concerned with the temp and the diminished lung
sounds!
Up to x-rays and back. I can hear the doctors and
nurses in the workstation area just outside of Kerstin's room. I remember
telling my sister that they were talking about Kerstin. I sent my other
sisters a message saying that I thought she had pneumonia, again. Doctor
comes in and said that after comparing her images, she had only a serious
respiratory illness during her hospital stay but now had secondary
pneumonia. He said that she did not look sick (she did not, my girl had
been smiling, listening to music and watch tv & videos), but the temp and
imagines suggested she needed more time to recover. He said he would not
admit her at that moment but if she seemed to feel any worse, her temp
continued or anything, she needed to come back there and be admitted. She
was started on a steroid and other meds that we picked up from the in-house
pharmacy.
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| Smiling through it all. |
Two weeks later, Kerstin is still getting breathing
treatments every 4 hours, still monitoring her temps because this past Sunday
she kept spiking 100.7 and higher for several hours. I also continue with the dreaded suction when
she is "rattling" and needs to cough. She has another follow up
scheduled in a few days. It is not clear when my girl will be getting her
feeding tube changed; that was schedule for the week she was admitted but her doctor
said no. This procedure requires Kerstin to be under anesthesia; he
said that would also cause slower breathing and he did not want that right
now. He suggested pushing it out to November. Guess what November
is already jammed with follow ups for the follow up, neuro-motor/physical
medicine for the orthopedic suggested Botox, dentist appointment as well as
neurology for Epilepsy follow up and VNS interrogation.
So, when will the tube be changed? When will we be
disappearing in a movie theater with her blankets to enjoy something
animated? When will we be leaving home without an appointment on the
calendar? When will we be going to Target so my girl can get her a $5 tee
and $7 leggings while her momma grabs some Starbucks and we roam the aisles
looking for clearance whatnots while saying "hello" to all of her
'co-workers'? We are overdue for fun!
I repeat, we are overdue for fun! It
is late on a Saturday night as I’m putting finishing touches to this post and
Kerstin has had her 10 p.m. breathing treatment, temp check but, as I check her
put her pulse oximeter on her O2 is fluctuating well below her low of 90. She is dipping down to 83 and 84. There would be so much beeping in a hospital setting. I just pray we can keep her healthy and not
at Children’s of Alabama before her scheduled appointment!
It is Monday, midmorning, and I
continue to put finishing touches on this post; decided to leave the previous paragraph in here to show our journey.
Instead of in my living room, I am now in the parent corner of Kerstin’s
Special Care Unit room at Children’s of Alabama. We are back, twice in a month. Kerstin ha been place on a rather high liter
level of oxygen with a little e step down this morning. It has been a very busy few weeks and from
Saturday night until this very moment, it has been busy. There will be more updates later. Look for them on Facebook and Instagram.
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| More IPV |
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| Trying to get a midmorning nap. |
More to come…
