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…

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

Reflections: An Interesting Year

     2017 has come to an end.  This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new.  We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys.  January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure.  Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. 

     I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days.  Thankfully, most of them have been in and out days.  However, in July and again in November, we did not.  The year was well, appointments were also going well.  Kerstin had a good year.  Then there was July, Kerstin got really sick with a summer cold that just would not seem to break.  She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia.  So, an antibiotic was started.  Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before.  He thought it would be best if he called her pulmonologist.  We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines.  We ended up there for a few days.

     Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist.  This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control.  Things moved quickly and at times it seemed to quickly for me;  the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube.  The procedure was scheduled and the tube was placed.  Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings.  

First visit with new team member. 

Checked in at IR

Post GJ placement

Hours later, all smiles and ready for the new journey.

     Sweet November...and what a story it has for us.  I am not fond of Novembers at Children's of Alabama.  Yet, this is where we found ourselves and the week before Thanksgiving.  Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly.  She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings.  After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case.  In fact, we would spend a week there.  More pneumonia, seizure activity as well as the stomach issues. 

Back at Children's

Resting after a very long day. 

Comfort aids

A mother's saving grace(s)

     In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better!  

Looking forward to what's to come.
What will happen if we don't give up?  Endless possibilities!

More to come in the New Year!

It's happening so quickly!

     "It's happening so quickly!"  That was my response after receiving a call from a radiology nurse at Children's Hospital on last Monday, October 2nd.  With a very calming tone, she wanted to speak with the parent or guardian of Kerstin.  After pleasantries were exchanged, she told me that she was in fact calling to schedule Kerstin's appointment to have her G-J tube placed.  I must admit that I was caught a bit off-guard by the quick turnaround. I was even more surprised when she stated that the procedure could be done this Friday the 6th or Wednesday or Friday of next week.  I said, "This Friday? It's happening so quickly!"  I paused, I guess she thought I had hung up or something.  I grabbed my datebook because another one of Kerstin's appointments had been rescheduled to this week, I told her that Friday would not work for us. 

     Believe it or not, the Sunday before, I had mentioned to my family that I felt like there would be a call from either the doctor or the hospital about scheduling the procedure.  So I was mentally preparing myself for this by writing down possible dates.  This did not become real until Jenna (nurse from radiology) called.  Real did not become so emotional until the call.  The tears came...it is real, again.  No matter how minor it may be said to be, it does something to the emotions because, Kerstin is my child!  My girl child!

Dates of possibility.

     So, on today, Kerstin will be having the procedure to replace her g-tube with a g-j-tube.  Kerstin is strong.  This new feeding tube will only help her even more.  Having to have the g-tube became touching but it was for her good and this g-j-tube will also be for her good.  

More to come...

The Summer of New Things --Things Anew!

     As we have eased into Fall, at least the calendar says we are.  I reflect back over the summer that was.  Uneventful it was not.  It started out with the usual lazy days of summer.  Those days suddenly changed in July and seem to have been almost unending since.  Kerstin had some stomach/ GI issues at the beginning of July which lead to some vomiting which lead to her aspirating which lead to pulmonary issues.  This one episode of vomiting lead her to on and off pulmonary and bronchial problems.  Before she had the actual vomiting, I had started to take note of Kerstin constantly chewing and smacking shortly after her boluses.  We talked with nutrition and her doctors and she was put on a medicine for reflux with the hope that it would help.  Not so much!

     So, back to the episode with the vomiting and pulmonary problems.  Kerstin was sick, having these bad coughing spells that would seem to take her breath away.  No amount of CPT and breathing treatments seemed to be working so, we would head to the pediatrician.

Kerstin was listened to, labs taken, sent for xrays to make sure that the crackle in her lungs (right specifically) was not pneumonia.  Her doctor placed her on a round of antibodies for a week to help clear her up.  Along with the antibiotic she was receiving around the clock CPT and breathing treatments.  

A week later Kerstin still was not feeling better!  This congestion just wasn't breaking, the antibiotic had not cleared anything.  We were back at the pediatrician again only to find out that not only was there crackling in her right lung, it was present in her left.  Her doctor looked just as defeated as I did.  He told me that he was going to call up to Children's and talk with her pulmonologist.  As we sat in the exam room, reading stories and listening to her Kirk Franklin.  I remember Kerstin looking at me and smiling.  I checked my phone to see what song she was listening to and it was "My Life Is In Your Hands".  I posted the screenshot to Instagram because my first thought was how appropriate the song was in that we never know what a day will hold for us. 

     After some time, the doctor came back to inform that he had sent xrays and labs to Children's and that Kerstin's pulmonary team was prepping a room for her!  I remember just staring at him!  He said they agreed that it would be best if she was admitted there in order to get the care she really needed. 

Prepping a room...they had done that indeed.  We got there, she was quickly admitted and taken up to her room where we would spend the next four days.  Kerstin would get CPT and breathing every three hours the entire stay, she was having trouble with her oxygen levels and required oxygen for 2 of the 4 days.  

She manages to smile through so much. 

It has been a long day. 

     After being discharged and home for a few day, Kerstin ended up back at Children's, this time with big GI issues, literally.  Kerstin's stomach was so distended, I was so afraid that pancreatitis had made an unwanted return!  Before knowing we would have to go back, we watched Kerstin's stomach balloon in the matter of hours.  I researched and found Youtube videos on what to do in the even of...venting was the common thing mentioned. Venting the gtube was not helping! I emailed pictures to her nutritionist and nurses.

 Kerstin was so uncomfortable and did not want to be moved in any position.  The nurse called back and said she had received the pictures and wanted me to pack a few things since we lived so far from Children's!  I hadn't even fully unpacked from the week before.  She gave directions on what to do when we arrived back at the hospital; if Kerstin go sick(er) on the ride to take her directly to the ER at the hospital, if not further directions were given.  Thankfully, the luggage was NOT needed.  An in office procedure determined intestinal gas, that could not and would not be corrected with gtube venting.  Also, nutrition and meal plans were changed while there.  Fast forward to about a month later, just before Kerstin's pulmonary appointment, we have respiratory issues again.  Pulmonologist hears more crackling in her lungs.  Days before she had more vomiting and apparent aspiration.  So, more antibiotics!       
     Fast forward again, about a week this time.  We are meeting with a new GI doctor.  He was in no rush to be in and out of the room, he listened to all questions and concerns and sincerely answered each.  He even wanted to watch as Kerstin was given a bolus to see firsthand the chewing and smacking that eventually makes her gag and retch and sometimes vomit which leads to the aspiration and congestion.  The smacking...rumination!  What? I had never heard of that.  That is a topic for another post on another day.  More to come...

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...