Our Lupus Journey…getting over the hump…and staying there

Oh, hi. Thanks for coming back to read about our voyage through this abyss called Lupus and all of it’s wonderful complications.  I didn’t write yesterday because my son lost his fidget spinner (fidget spinner.com in case you want to see what it is) and I literally moved his full size mattress off the bed to look for it and then put it back on the trundle.  I pulled my back out for nothing because the toy wasn’t there.  But, I digress.

We were discussing the devastation of the diagnosis of any chronic illness and the different complications that can arise–in Olivia’s case, blood clots.  It takes an incredible team of doctors along with strong support from your tribe to conquer the physical and emotional toll serious illness takes on your body.  As Olivia began to recover, she participated in home bound tutoring so she wouldn’t fall behind in school.  I am happy to report she has maintained straight A’s and made National Junior Honor Society all while dealing with the monster in the background.  Also, our family joined a wonderful support program at Hasbro Children’s Hospital called TALC which stands for The Adolescent Leadership Council.  An amazing group of chronically ill teens and their parents meet monthly to eat dinner and discuss topics that are relevant to coping with a chronic illness as a teen or a parent.

We were going along status quo until my warrior went to the allergist.  We had tests and then blood tests which showed an Ig E mediated response to peanuts.  In other words, this poor kid has developed peanut, tree nut, and several other food allergies. We carry this around now wherever we go. A hiccup,  really.  Perception is everything so maybe if we view it as a hiccup on the road to recovery then maybe it will take some of the shock out of it.img_1192Ok, so fast forward a little bit.  We had wonderful holidays, Olivia was medication compliant, we kept every doctor appointment, and got all of her labs drawn at the specified times.  Which brings me to today, February 8, 2017.  We had clinic this morning.  We met with her wonderful rheumatologist and nephrologist and they informed us that her lab work indicates that Olivia is in remission.  It took eight long, grueling, heart wrenching, emotionally and physically draining months, but, WE DID IT!! This is Olivia Friday night going to a PC Friars hockey game with her dad.

img_9817There are no guarantees and Lupus is unpredictable –it could come back at any time without warning.  But, right now, we will celebrate.  We will thank God and all of our wonderful family and friends who helped us through this awful maze.  Thank you for taking the tour of our journey so far.  I don’t know the topic for next time yet…I’ve learned to take one day at a time.

Our Lupus Journey…an unexpected complication

In my first post, I gave you a synopsis of my daughter Olivia’s sudden collapse and diagnosis of Lupus.  We spent the first month of the summer of 2016 either in the hospital or trying to get adjusted to this new life and dealing with a chronic illness.  We tried to take our minds off the hideous complications and side effects from the prednisone which you can clearly see in the photographs.  Nevertheless, we held a fundraiser to raise money for research.  Many wonderful members of my family and lots of friends attended the painting party on a hot August Saturday morning.  We painted a beautiful canvas and had lots of laughs.  The event took our minds off our situation for a very brief moment and we were able to raise money for the Lupus Foundation.  But, Olivia was sick.  Even more sick than usual.  She felt a crushing pain in her chest.  She couldn’t seem to get a good deep breath.  Her resting heart rate was high. Very high. Like, 176 bpm high.  I knew I had to take her back to the hospital.  So, back to the ER we went the next morning.  But, she was discharged because her X-ray was clear.  ALWAYS trusting my mother’s instinct, I pushed for a cardiology appointment the very next morning. It was then that we were told just how life threatening Olivia’s situation truly was at that moment.  The doctor did not want her to move.  He was calling the ER.   They would be waiting for her at the door. The nurse would wheel her to my car.   “She has pulmonary hypertension and we need to treat her now.”  The words made perfect sense but I could not comprehend them.  I got in my car and could not remember how to get to the hospital which is literally around the corner from the cardiologist.

My husband, my mother, and my sisters arrived at the hospital within an hour to help in any which way they could.  It would be twelve long and grueling hours before CT scans and a myriad of other tests were run to confirm the diagnosis.  The ER doctors from the previous night were still there.  They came in and apologized for sending her home.  I realized in that tiny room how vulnerable we all are.  Families and patients, obviously, but also doctors and nurses who are in the trenches trying to “fix” sick kids.  They are human. I hold no ill will.  They are doing the best job they can with the information and tools they have in front of them.  Finally, we knew Olivia had what is called massive pulmonary emboli in both lungs.  Their size dictated that she should be dead.  Immediately, we were whisked away to the PICU (pediatric intensive care unit) and we remained there for ten days.  My family left for the moment, but they came back every single day to provide support, pick up dirty clothes, and even bring food and coffee.  I have another child, Grayson,img_5952

and school was about to begin for the year.  My husband returned home to care for him and go to work.  He visited as much as he could, but, the beginning of middle school is a big transition and Grayson needed his dad.  I remained at Olivia’s side for the duration, only leaving to shower (in the luxurious accommodations of an ICU unit) and go to the cafeteria.  We were just getting used to the Lupus diagnosis, and now, this!  I remember feeling relieved to know what was wrong, but terrified that she would not survive (“The first 24 hours are touch and go, if the heparin drip doesn’t work, she could code…” ICU doctor quote)

Next time we meet, we’ll talk about THAT recovery process and then you should be all caught up with our situation.  Then, maybe we can discuss strategies to relieve stress, questions to ask at follow up visits, how to learn more and get involved, and a whole bunch of other good ideas I have waiting to share with you.  But, you needed this background in order to understand our story.  I hope it helps you in some small way on your path.