Sunday, August 31, 2014

Mamma Bear

Mama Bear had to take some big deep breaths this entire week to stay the calm bear in the bunch.  Whoa!  What a wild week we had.  Between finding out Parker was bullied at school his whole first week, to him having trouble breathing and going to the ER, to Parker being admitted and then trying to go to a few classes to show he is truly trying his hardest (because we desperately don’t want him kicked out of traditional school)…and finally, then ending the week with Logan going to the ER with a “false alarm” due to something he ate…I was so very very ready for a three day Labor Day weekend, even though I barely got to “work” this last week and have to make up hours.

People tell us all the time:  “things will get better” or “hang in there…” or “I can’t believe all you guys go through”…  I am here to tell you that when you go through has many challenges as we often do, you get really good at problem solving…but sometimes I wish we didn't have to do so much of it.  This week we had to face so many of our fears!

If you have been keeping up on the blog, you know that Parker had a great time at Camp Boggy Creek and an amazing first week of school.  We truly were a family full of joy and felt so blessed to have such a smooth transition back to school after 3 years of him being out.  When I picked Parker up at school on Friday, Parker informed me, with all the bravery he could muster, that he has been bullied all week.  He would not tell me by whom, because he didn’t want to be a tattle-teller.  He is trying so hard to just fit in and not stand out, but this bully found him anyway and he was so cruel.  He used nasty vulgar language, insulted his intelligence because he was “back in 9th grade again”, and insulted “his mother” in such a mean way that Parker could only tell me through tears because he was so very embarrassed.  Yes, the Mama Bear in me wanted to cuddle him and also stand on my hind legs and attack. 

I called the school and addressed it with the principal.  I assured her that this student had to be new, as children at this school never spoke this way…and especially not in the classrooms on a daily basis.  I gave her as much detail as I could, given what Parker told me, and that this kid was in multiple classes with Parker.  I also said that I felt like this child needed support, because for him to behave this way, he clearly needed help.  She assured me she would be talking to her teachers and dealing with this.  I also assured her that I would be “coaching” Parker on how to deal with this too.  The good news is, this kid did need help and because I alerted her he is now getting the support he needs to be successful.

On Sunday evening Parker was having trouble breathing.  He said it hurt to take breaths.  So, when bedtime rolled around, he slept with me, with his bi-pap machine on, and I pretty much was awake most of the night to make sure he was breathing.  When he woke, breathing hurt more.  So, we called the pulmonologist and took him to the ER of the hospital where the pulmonologist works.  Besides taking an x-ray of his lungs and almost giving him Tylenol (he is allergic), they pretty much did nothing else for him in the ER except cause us complete misery.  They didn’t even hook him up to monitors; even though I told them why I brought him in; and that he has a history of pleurisy and pericardial effusions.  They did run some routine labs and it did show elevated CRP (an inflammation marker).  As evening approached, the resident doc came in to tell us that they felt that he was in a flare and that we should consult rheumatology.  So, I suggested we leave and take him to the hospital where his pediatric rheumatologist is…He said he felt that would be ok and he left and I went outside to call his doc to see how to proceed.  

Unfortunately, I could not get through on the phone, so I went back in to the ER to all hell breaking loose.  There were about seven staff outside Parker’s ER room and they stopped me to tell me that they wanted to admit him.  The attending doc then went on to tell me that my husband and Parker were quite upset but she felt that this was best.  She went on to say that if we left we would be going against medical advice and they would report us.

For a moment, I could feel the room spin…surely this ER doc wasn't insisting that we get treatment from the very pediatric rheumatologist we had left many years prior?  And why were all these people in front of Parker’s room.  As I look around I could see stern straight faces on all of them, several with their arms crossed, all standing firm, and all looking at me.  I felt a panic beat in my heart, I started to sweat, and I knew I had to stay calm and help them see this from our perspective and surely all would be ok. 

So I took a huge deep breath, and looked right into the attending doc’s eyes and then over to the charge nurse and began my story.  I explained that when Parker was 8, it was very hard to get help for him.  For over a year and a half we took him to specialists before we finally got a diagnosis of JA for him.  Then we started seeking treatment and medical care at this very hospital with the pediatric rheumatologist.  Months and months went by and Parker continued to worsen.  Clearly what was being done was not working.  Parker began running daily fevers that came and went and his rashes were increasing and he was so very swollen it was completely visible.  But back then, as it still is now, seeing him in pain was the very worst thing.  Parker was bad but back then, we didn't have a follow-up with that doc for 4 months.  I called and called and called…I kept getting excuses from the nurse practitioner as to why the doc hadn't called back and she kept telling me her hands were tied, she couldn't bring him in unless the doc said.  This went on for 8 weeks as Parker continued to get more severe.  This doctor would not call us back or allow us to bring him in…he wouldn't even give our primary doctor a call back.  Finally, our primary doctor said we could not wait any longer; we must get him to a doctor who could help him.  So, she mailed over 100 pages of records to the doctor he now sees.  We were seen the very next day.  We then were on a fast track for treatment and soon Parker was hospitalized.  These were very difficult times and I explained to this attending ER doc that I was sorry that my husband was so angry and that Parker was crying, but that I felt that they had every right to be upset.  Because see, we have been told…on multiple occasions…that if Parker would have gotten better and quicker treatment in the beginning, then he would likely not be as severe as he is now.  The nurse said to me, “please don’t apologize”.  The attending doc, with her straight face, said she still wanted him admitted here and under rheumatology.  I asked why he couldn't be admitted under the pulmonologist and she said he doesn't admit.  I then asked why I couldn't take him up to his regular doc, who knows him best and works with all his docs.  She said because he needs observation.  I said, “Then we could transport him.”  She said, no, because they have docs here who could treat him.  I asked that he not be seen by the doc we left.  She said she didn't know if that was possible.  I then continued with that the resident doc said it would be ok if we left, but she persisted that if we did leave then we would be reported for going against medical advice…that is when I glanced over, because I saw her eyes drift to the people who looked like administration in suits and then I saw that the “red light” was on outside our room…indicating the alarm would alert them if we were to leave.  And much like a caged animal, I felt trapped.

I asked who was on-call.  As I silently prayed that it wouldn't be the doc that would totally stress out Parker to come face-to-face with… It was the other new rheumatologist.  Finally, I agreed we would stay if they would only allow the new doc to see and treat Parker and I didn't want the other doc even seeing his records.  They agreed.

So, finally, after a very long day in the ER, I went into the room to explain to Michael and Parker what happened in the hall and what was going to occur.  I could see the anger on Papa Bear’s face.  I could see the fright on my Baby Bear’s face…  I had Michael leave to get dinner for all of us, since we had been in the ER all day, but also to just get out and chill down.

Soon after we all ate, we finally went up to the room.  We had been assigned a floor doc as a case manager and it was obvious nothing more was going to happen that night.  So, Michael went home.  Tests/scans/labs were all done the next day.  What it came down to is Parker was in a flare, likely brought on by an unidentified virus and his rib cage and surrounding muscles were the most inflamed.  He was given morphine on the floor; his lungs and heart were ok; and by that evening we were home.  All of the tests that were done on the floor could have easily been done in the ER the day prior. 
My niece and nephew on a hall
picture as we left the hospital

Wednesday, Parker slept the entire day.  Thursday we went to the Pain Management doc and came up with a plan with his pediatric rheumy.  I took him to school for one class and he cried and didn’t want to be there, due to the pain…I left him crying (along with the admin and nurse)…one class, just one class… and then I just went to my car and cried my eyes out.  I cried for my son who must continue to live with pain, who I must push to keep moving, even though it hurts, because it always hurts…and he has to live with that pain…and then I said my prayer for him…took some deep breaths…and drove to work.  Because life goes on…

Thursday, August 21, 2014

The Joy of WALKING...Don't Need That Wheelchair Today!

When Parker didn't get into summer camp this year it devastated him.  In the past 3 years, Parker has not been in traditional school due to his medical issues and so camp is one of the very few opportunities he has to be around other kids and to have fun.  He spends way too much time in hospitals, getting procedures/tests, and in doctor offices.  One night he was in so much pain that he tried using his bio- feedback and think of his "happy place" and he thought of Boggy...but that turned into much grief.  He came and woke me in the middle of the night crying hysterically, because in that moment, at 3:00 a.m. in the morning, he realized that he was not only in overwhelming pain but grief with the thought that he wasn't going to camp this summer.

Three days later (so much has been coming in 3’s for us lately), we got a call that a spot came open and he could go to camp.  We were hesitant to let him go because he would not get back from camp until just the day prior to school starting; and he was re-entering into high school this year.  We know that camp can completely wipe him out because he uses so much energy...But we decided to send him because this is the one thing in his life that brings him complete sustaining joy.

Because Parker was in his "happy place" at camp and we knew that he was being safely looked after with the amazing medical staff on hand, my husband and I decided to take a short weekend trip to the beach, our "happy place".  We have not been alone on vacation for 5 years.  And our oldest son came to visit us on the beach each day to skim board..."his happy place".  We all experienced the JOY of camp...

We were actually a little nervous to pick Parker up from camp because we didn't know what physical condition camp would leave him, as he had to start school the next day.  We never, in all this journey, would have expected to see the "Parker" that came home that day...He came home a happy, stronger, more energized child than we have seen in 8 long years of struggle with this very mean disease.  And, because the camp schedule has an early rise-and-shine kind-of day...his sleep schedule was also now on track for school days.

And the next day, the first day of high school...the first day back in traditional school with no hospital home-bound, no more on-line classes...Parker didn't just decide to re-enter school...he decided to leave his wheelchair behind and WALK through those doors and into his new-found strength and re-boot on “being a kid”.  He did it!  And he has been doing it all week!  We know that Parker's strength and drive brought him here!  We know that our many prayers and continued hope pushed this opportunity into his path.  But what we didn't know is that Camp Boggy Creek would give us and our sweet child a gift that is beyond measure and is full of JOY for our entire family.  

The words “thank you” are not enough. Our hearts burst with appreciation far beyond what we could say with our voices.  And we are so very thankful that the Arthritis Foundation made this possible; that Paul Newman had the vision and love to start these amazing camps for children with life threatening and life altering chronic diseases; and that there are volunteers, staff, and medical professions that give of themselves so that our children may simply LIVE LIKE KIDS.  We love you dearly!
Much HOPE and LOVE for LIFE,

The Lentini Family