Just be her Mom? 

Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant special health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and spasticity, her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love. 

When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. There are no vacations or holidays. Even on those days, you, mom-caregiver are always “on the clock”. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits. 

Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

 Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

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! 

Kerstin, wearing her mask!

 

“You really can change the world if you care enough.” –Marian Wright Edelman

 

Breathing!

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'!

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.  

At work with her momma

Cover girl and Aunt Audrey

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. 

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.  

 

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.  

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.  

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. 

More IPV

Trying to get a midmorning nap. 

More to come…

Seizures and VNS

     When I say that I am growing in many aspects each and every day on this journey called life and "Growing With Kerstin"!  As she grows physically, I am also growing in knowledge in ways of taking care of my child with "complex medical needs", "special healthcare needs", "a disability" yet, the best title of all is simply, Kerstin, my moon and stars, my sunshine!  Yesterday, we added a few more crucial steps on our journey.

     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,

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 

“What’s wrong with her?” “She’s sick.”

Raising a child with special health care needs comes with many challenges.  There are some really high highs and also some really low lows.  As parents we love our children and we see them go through so many changes as they grow and deal with the things that come with their varying diagnoses.  We want our children to enjoy life, be involved in their communities.  We want them to be able to do things with and like their peers.  You know, things like, going to the movies, shopping, out to eat, etc…  We don’t want them to be seen as wrong or sick!

I cannot count the times we have been having a good day, on outings, Target included and a child sees Kerstin in her wheelchair and they stare and will ask their parent(s), “What’s wrong with her?” “Why is she in that chair?”  Too many times I hear the parent whisper, “She’s sick.” NO!  And that is exactly what I have started to say without explanation.  When I overhear that answer, I just politely say “No.”  When a parent tells their child that there’s nothing wrong, and to speak, we usually spark a conversation.  They are receptive and seem to want their child to be as well.  It warms my heart, and I am sure the hearts of other parents of children with special needs as well, when parents of children without those needs are open and want to make sure their child speaks and understands diversity. 

Having a disability or special health care needs does not equate to sickness.  Cerebral Palsy is not a sickness, it is not contagious.  Epilepsy is not contagious.  Yes, our children get sick, so does everyone.   When a child/adult has a disability, it usually takes them longer to overcome general illnesses.  Using a wheelchair, wearing glasses, AFOs, neck supports and other assistance in NO WAY means the person is sick.  When Kerstin is sick, she definitely will not be in a restaurant, a movie theater or her beloved Target.  That is something we just do not do.  The only time she is outside of our home while sick is to go to the doctor or unfortunately when she is hospitalized.

So, when you see a family out enjoying their day just as you are and your child asks, “What’s wrong with her (him)?”  “Why is s(he) in that wheelchair?” Be sure to tell them, that nothing is wrong, she needs the chair to get around and go places, say “hi”! 

Seizure Control Options Take 2

     Last month, I wrote "Seizure Control Options" for Kerstin and the fact that she is back to seeing her neurologist every few months instead of the annual follow up appointments we has gotten to a few years back.  Over time, with the intensity of her seizure activity ramping up again, we went to every 6 months now, her last few visits had been like every 4 months with lots of calls and updates in between.  Now, it has been a mere two months and within the next few days, we will be having our first/ consultation appointment with a neurosurgeon at Children's of Alabama.  I am sure that 2018 will close out with lots of follow up appointments. 

     To talk more about Vagus Nerve Stimulation Therapy or VNS Therapy.  What is the vagus nerve? What is VNS/ VNS therapy? How does it work? Will it stop seizures?  So many questions.  
The vagus nerve according to Britannica, is also called X cranial nerve or 10th cranial nerve, which is the longest and most complex of the cranial nerves.  "The vagus nerve runs from the brain through the face and thorax to the abdomen." (Britannica.com)  
Vagus Nerve Stimulation (VNS) is used to prevent seizures.  Gillette Children's Specialty Healthcare describes VNS as, "Vagus nerve stimulation (VNS) prevents seizures by sending regular, mild pulses of electrical energy to the brain along the vagus nerve in the neck."
The therapy or stimulation works when a  stimulation device that is similar to a pacemaker sends electrical pulses. "The VNS therapy system is surgically placed under the skin on the chest wall. A wire runs from the stimulator to the vagus nerve, which is part of the autonomic nervous system. The autonomic nervous system controls involuntary body functions, such as heart rate" (Gillette Children's).

     As stated, there has been an uptick in Kerstin's seizure activity for some time now.  Her latest was yesterday morning just after she woke for the day.  Kerstin is now prescribed three daily seizure meds and one in the case of a seizure lasting longer than five minutes.  As with most medicines, they all have side effects as well as long term effects on one's body.  A few years back she had to be taken off one because it contributed to an illness that kept her in the hospital for weeks. 

     Next week, Kerstin has been scheduled to see a neurosurgeon.  We look forward to talking further about VNS therapy as an option for seizure control and hopefully getting Kerstin on lower doses of anti-epileptic/ seizure medications or off of them altogether.  An update is coming after the appointment next week.  We are on the road to Children's again and two months sooner than anticipated. 

More to come...


resources
VNS Therapy,  What is Vagus Nerve Stimulation?, Vagus Nerve Stimulation, Vagus Nerve Anatomy

Seizure Control Options

Kerstin is back to seeing her neurologist every few months.  We had gotten up to annual appointments but with an increase in activity some time back, we had to see him more often.  The most recent follow up was last month, May.  As with all of her appointments and more specifically the neuro ones, we are equipped with notes as to what kind of seizures she has endured in between appointments.  The doctor and staff already knew about some of these episodes because they had been contacted to make them aware of the seriousness of her seizures. 

The May appointment lasted a bit longer than most.  There is no complaining about that fact because I would really be a little upset if he rushed in and out of the exam room.  We talked over things as they relate to Kerstin, seizure activity, weight gain, possible increase in medicines and even a possible new treatment or new med to add to regimen.  The treatment would be to maybe consider Vagus Nerve Stimulation therapy (VNS therapy).   What is VNS therapy?  "Vagus Nerve Stimulation (VNS) Therapy is a medical device proven to treat difficult-to-control seizures, also known as drug-resistant epilepsy. The device sends mild pulses through the vagus nerve to areas of the brain known to be associated with seizures" (VNS Therapy Overview)."

Until this appointment, I had never heard of VNS therapy an was unaware of the process of placement or the potential benefits. In the meantime, her neurologist wanted to add a new medicine to hopefully help with Kerstin's nocturnal and catamenial seizure activity. The new med, phenobarbital, to be given once daily at night/bedtime. The first thing noticed was that Kerstin was immediately sleeping better and through the night. She even started to sleep later into the next morning but one day when I was not home with her Kerstin slept well into the day, 11:30 a.m. and went to sleep again around 2:30 p.m. This scared me and my sister, who was keeping her for me that day. I called the neurologist and told the intake what was going on and the nurse immediately called back to calm my nerves some. There is an adjustment period to this medicine and it can cause a lot of drowsiness. I was told to watch her over that weekend but if she slept like that again to call immediately.

Over that weekend, I reached out to a friend to see whether her daughter was on this new med, if she knew someone who was and if she new any families who has VNS therapy. Her daughter is on a different med, one that Kerstin had been taken off of, she knew friends on phenobarbital and said at first they were completely drowsy and she knew friends on VNS and loved it. Now, back to the phenobarbital, Kerstin has continued taking it at night, the drowsiness comes and goes, for the most part she has been sleeping really well at night with very few exceptions.

Last month, I was able to get in on a caregiver chat with families that are using VNS therapy and those that have been given this option as an epilepsy treatment. There is another coming up soon, that I may attend. I have also been added to a Facebook caregivers, users and professionals group. VNS is a being highly praised as a way to treat seizures/epilepsy without the use of so many meds or high dosages of anti-epileptic medications and their long term side-effects.

So, where will this journey take us? I'm not even sure. I do know that there is a follow up with her neurologist in a few months and a possibility of a consultation with a neurosurgeon around the same time.

More to come...

VNS Therapy

Harsh Reminder!

      Reminder(s) is defined as "a person or thing that serves to remind", according to dictionary.com.  Then what is remind?  The same site tells us that remind is to "cause a person to remember".  Life does not give us options on how we will be reminded of something, nor do we know when it will happen or whether the reminder is subtle and nice or just harsh!  Well, on Wednesday morning we got a not so subtle reminder that Epilepsy/seizure disorder is still a very prevalent part of Kerstin's journey!

     The thing about seizures is that they have no time frame, they can suck the joy out of any moment.  They can happen in the middle of the day, during a ride from a doctor's appointment, in the middle of the night or even early in the morning, marking the end of a good night's rest.  Which is what happened yesterday.  Kerstin was suddenly awake at 5:40 a.m. and thrust into seizure activity.  With two episodes of cluster seizure, I am so thankful that she did not require medicinal intervention to stop the seizures. 

     So, what are these cluster seizures/seizure clusters?  Clusters are when seizures start and stop.  The Epilepsy Foundation states that, "Seizure clusters are also known as repetitive or serial seizures, with return to baseline between events".  How can one truly prepare for that?  There really is no comparison for a parent or caregiver tending to a child with special health care needs that cannot tell you that they may be sensing that one is coming (an aura) nor can you truly know what it is like when you have not had a seizure yourself.  As recommended, it is good to make notes of the seizure activity:  how long it lasts, how many clusters, how long it took to return to usual activity, etc...

     To those clusters, in the dark coldness on January 3, 2018; thanks for the harsh reminder.  I am reminded to always know what to look for and to continue learning and growing on this journey of Growing With Kerstin. 

More to come...


Reference
Epilepsy Foundation:  Seizure Clusters 
Dictionary.comhttp://www.dictionary.com/

Epilepsy Monitoring Unit (EMU): Day 1

     I am going to try and make a post at the end of day each day of our stay here at the Children's Hospital EMU.  As I prepare to post about the busy day, I can't help but think about my mom.  I listened to a recording of a conversation I had with her on May 17, 2015 at around 9:50 am.  Yes, one year ago, Kerstin had had a seizure and was restless the night before (May 16, 2015), my mom was concerned as always and as we talked, she told me that she hoped Kerstin's doctors could find out what was going on with her.  Well mom, it's been a journey and many appointments later, we are here to go through another series of tests and studies to see what's going on.  

People watching at admitting office

Welcome screen on the telly!

     Today, we checked in at noon.  Then it was on to the 10th floor of the Russell building; a very familiar floor.  We've even seen familiar faces.  All too surreal.  I am very thankful that Kerstin is not here because of unexpected surgeries or illnesses.  However, we are here because of the increase in seizure activity Kerstin has been experiencing.  Tonight is the first night of monitoring, she's been placed in her "mummy head-wrap", leads and wiring everywhere.  She is content, comfortable and seems to be relaxed.  Though, for whatever reason, her temp tried to spike a bit, no worries, it has already gone down.  

Lead placement. 

     Not sure what the night will include but an update is on the way tomorrow.  

All wrapped...monitoring in progress. 

More to come...