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…