Growing with Kerstin: Raising a child with "special needs"
Striving to be the best mom to my daughter. No disAbility will get in the way of her living a happy life! Extremely THANKFUL!
Saturday, February 26, 2022
Wednesday, August 11, 2021
Breakthrough
Breakthrough
Google search image |
Lately, that’s been a buzz word when it comes to COVID,the vaccines and breakthrough infections. I used to associate that word with religion and the advancement of desires and “answered prayers”. The meaning of breakthrough is any significant or sudden advance, development, achievement, or increase, as in scientific knowledge (dictionary dot com). More recently on my adult life, I have associated the word with my daughter having “breakthrough seizures”.
Kerstin has a vagal/vagus nerve stimulator or VNS; she is also prescribed 4 different seizure medications. Before the VNS was implanted she was on meds only and had breakthrough seizures and some would get really bad; talking full tonic-clonic or grand mal seizures. We were advised by her neurologist that the VNS would be a good way to help reduce her seizures without adding more medications that would have her so sedated that she would be sleepy most of the time and not very alert. Yes! We wanted that option and Kerstin was implanted in March of 2019.
Kerstin’s seizure activity has gone down tremendously. However, she still had seizure activity and from time to time, seizure activity becomes visible. They have not turned to a grand mal. Kerstin’s last grand mal was in the parking lot of a Walmart; February 2019, one month before her VNS surgery.
Breakthroughs happen. Have they been has horrible as pre-VNS? No! Thankfully, no! Should I stop her meds or have the stimulator removed because she still has very sporadic breakthrough seizures? Hell no! The breakthrough seizures don’t have my child convulsing then leave her sleep or out of it for up to 24 hours afterwards.
Back to that breakthrough definition; scientific knowledge tells me that there is a possibility of seizures but, they are not like those before Kerstin was medicated and implanted - had a layer of protection.
These days, layers of protection are critically important to me for my family. I have a child with a very complex medical history and protecting her is important to me.
😷 💉
#MaskedAndVaccinated
Monday, April 26, 2021
COVID-19– Fears of navigating a post
mask mandate era and re-openings with a child with a complex medical history.
This past year
of living through a global pandemic has been difficult for many people in many
ways. Not having the usual contact and
personal intimate interactions with others can become very lonely over time. We are human beings and the connections to
other people are what keep us going, provides support when it is most needed
and provides comfort. When we are having
a hard day, or when we have had a really good one, we instinctually want to
gather with family and friends to share the news. Gathering, is one of the things we have been
repeatedly told NOT to do in the midst of the coronavirus pandemic.
Watching the
news, hearing reports on the dangers of the virus and how it affects the lungs,
I became immediately attuned to learning what I could about this COVID-19. I needed to know what could be done to keep
my daughter safe and healthy as well as myself.
My daughter, Kerstin spent weeks spread over months in and out of the
Special Care and Pulmonary Units of Children’s Hospital of Alabama in the late
Summer and Fall of 2019 then again in 2020 with respiratory illnesses. During these stays, Kerstin required and was
placed on High Flow Oxygen for several days at a time for each of the four
separate stays. I don’t want to spend days
and nights inpatient watching my child be hooked up to numerous machines and
needing that higher flow of oxygen anymore.
We just spent about a week of her on what they call an “at home regimen”
and was told that if she continued to have low oxygen saturations, she would
need to be seen at the hospital. Thankfully
she got through that and has not been on supplemental oxygen in 5 days now.
As we
continue to traverse through the COVID pandemic and vaccines have rolled out
and some have been halted for further research; the world seems to be
completely done with everything “coronavirus”, “pandemic”, “virus”, “mask”, “social
distance”, “physical distance” and “safer at home”. Re-entering the world is not the same for
everyone! There is no going back to “normal”
or “business as usual” for many people.
Like grief, going back into the world with a deadly virus still
ravaging, mask mandates ending (ended here in Alabama) and, a low percentage of
adults being vaccinated (again, AL), it will look and feel differently for
everyone. Some people are eager to go
mask-less, some cannot be vaccinated for medical reason, some will not be
vaccinated for whatever reason(s).
Whatever the reason, I will not judge them and would hope that my
decisions to be vaccinated, to remain distant and masked are for the health and
safety Kerstin and other people considered “vulnerable”.
As we
continue to push through to the other side of this virus, please continue to listen
to sincere and trusted medical professionals, respect the personal spaces of
others, wash your hands and wear your mask.
We will!
“You really can change the world if
you care enough.” –Marian Wright Edelman
Saturday, February 8, 2020
Now and Then
Photo by: Judy Barranco |
Photo by: Judy Barranco |
More to come...
Monday, October 28, 2019
Breathing!
Hot off the presses! Kerstin's a cover girl...so is her momma |
At work with her momma |
Cover girl and Aunt Audrey |
Cover girl with Guardian Angel Carol |
Very first time getting IPV |
Kerstin sitting up; having a good day in Special Care. Right before the not so good first night in Pulmonary. |
No idea we would hear she still wasn't at her best. |
Smiling through it all. |
More IPV |
Trying to get a midmorning nap. |
Tuesday, April 2, 2019
Seizures and VNS
Late February and March were jammed packed months. Appointments, planning, pre-op and surgery. April is keeping the same momentum. But, back to March. On March 12th, as you know from my last post here, Kerstin had her VNS implanted. The surgery went well, she is recovering nicely, she has now has more "Scars of Strength", and they have healed very quickly when compared to previous surgeries. I think that is because none of the VNS incision were as large or as deep. Still, she had some tenderness for a few days afterward but that is all gone now and our journey is moving along.
Pep talk and kisses before she heads off to surgery. |
April Fools Day 2019 was spent in traffic and then at Children's of Alabama for a full neuro day! Traffic on a Monday into Birmingham, AL...horrific. We already had a 2 hour drive there but Monday's turned into a 3 hour voyage. Remind this mom, no more Monday morning appointments! Mid-mornings and afternoons, maybe. Anyway, once there, down to her neurosurgeon. He was pleased with her healing and we are discharged from him unless/until there are device concerns or at the time for a new battery.
Bandages removed; three days after surgery. |
Two weeks post VNS placement. |
Back up to her neurology to see the nurse practitioner (first time meeting her and it was good meeting) and neurologist. This was where the bulk of the day was spent. No complaints at all because things were required to benefit Kerstin. Educational for this mom to again, benefit Kerstin. They are needed. I truly believe this is one of the things that will prove to be a saving grace on this Seizure/ Epilepsy journey. On the lowest "milliamp" (new word alert) or pulse settings, of her VNS, we are already seeing changes in her seizures. After implantation, we went ahead and started proactive swipes, to get her acclimated to the pulses from a swipe as well as my getting used to swiping the magnet over the stimulator.
About nine days after VNS implantation, Kerstin had visible seizure activity, shortly after I had given her a proactive swipe. So, I did another one to stop this seizure from increasing and approximately one minute later the activity was subsiding. Last week however, Kerstin's brain decided to test the system. Again shortly after her mid morning swipe, she started to have a seizure, one swipe, one minute later shes still involved. Another swipe another minute, still involved. This one was visibly increasing by the minute with twitches so hard, they could be seen in her neck (never happened before) and felt all the way to her hairline. Yet, after four swipes and four minutes they start to subside before Diastat was needed.
On the day of surgery, Kerstin's device was set at a lower end of pulses; her neurologist has a goal he wants her to get to, depending on how her brain and body reacts to pulses on various levels. At this appointment, her milliamps were amped up a bit. Again, my champion did well with things minor increases. Her next increase will be done remotely! The wonders of science, technology and medicine!! We will be back in office in a few weeks for additional talks and another increase to her milliamps.
VNS Interrogation |
Kerstin's VNS profile. |
Alert and attentive! |
Kerstin's neurologist and nurse practitioner are happy she has the device in place. I am already happy that we went ahead with this advancement and seizure treatment that does not include more medicine. Her nurse practitioner told me to look at the VNS as a sitter, keeping an eye on Kerstin even when I cannot. The device will kick in with pulses when it notices an increase in her heart rate, often signs of strenuous activity and heart rates increase during seizure activity. Also, it will notice those absent/staring seizures I may miss or think of as her just staring.
My very patient, patient. Entertainment in between appointments. |
We are now equipped with a little more knowledge than the days and weeks before. We also have a magnet hooked on her wheelchair (with her wherever she goes) and on the stand near her bed. She has her i.d. cards, one in her wallet and I have the other. We are once again, making some very important strides on this journey...Growing With Kerstin.
Always, always happy to go in and come out on the same day! |
More to come,
Monday, March 11, 2019
VNS Placement
Yes, another procedure or surgery. Like her GJ tube placement and replacement, this is not considered a major and typically an outpatient procedure. However, with increased pulmonary concerns, we have been told to "be prepared to stay overnight". We are steadfast and trusting the bags will not be needed. It is the night before surgery and Kerstin has had her Dial bath, and the chlorhexidine gluconate (CHG) (preoperative skin prep wipes) have been used. They are indeed sticky!
CHG wipes |
So, what is VNS? Vagus Nerve Stimulation is called a "pacemaker for the brain", it will send mild electrical pulses or energy to the brain by way of the vagus nerve. The pulses will act as stimulants to cut down the intensity of seizures or preventing them altogether. The VNS is an add on to her epilepsy care regimen and will eventually help her be able to come down on the high dosages of medicines she is currently on yet, still having seizures with some of them being very intense, like she had just a few weeks ago.
Kerstin currently has prescriptions for 4 different seizure medications. In addition to other medicines she takes; she takes 1 med twice a day, another at bedtime only, then one she takes 3 times a day and one in case of a seizure lasting longer than 5 minutes. Sounds confusing? Sounds busy? Hectic? It takes some scheduling and work to keep up with the schedule. Overtime, these widely available and approved medicines can cause other health concerns, they take a tole on muscles (which is already a part of her life with her Cerebral Palsy diagnosis), they also affect alertness/awareness.
Outside of cannabis/cannabinoid oils/ marijuana, VNS is a none medicine treatment to help with seizures. No, I have not ruled out cannabis treatments for Kerstin if they seem to be needed. But, for now, we prepare for VNS placement. Look for updates from Children's of Alabama on Facebook and Instagram - Growing With Kerstin!
I think I could find it with my eyes closed. |
More to come...
Seizure Control Options
Seizure Control Options Take 2
Vagus Nerve Stimulation (VNS)
VNS Therapy