A Balance of Hope and Love

Some days, LOVE takes my breath away…We feel deeply grateful to have love in our lives. Somehow, I feel living with chronic illness makes love oh so much richer.  I have not written much lately, I have been deep in reflection and realization…living life and appreciating its gifts.

Our family lives in constant hope.  Hope that we will see gains and improvement.  In many ways we are constantly pushing forward with hope as our shield.  And when we dare to lower that shield, we still hold hope in our hearts; because with hope, we grow with the possibilities.  If we didn’t believe in possibilities, how could we endure?

And yet, I must acknowledge our reality…everything we do, we plan, we celebrate…we do with much balance; for we know that there is a cost.  I think this is the most remarkable strength that Parker has, but with that balancing act, he has to decide what to say yes to and what he will do to make his “yes” a reality.  Let me give you a for instance…Parker wanted nothing more than to spend time with one of his cousins who was home for the holidays.  But in order to do so, he literally slept all day so that he could see him in the evening.  He has to bank his energy, power up in a sense, so that he can sit up in the evening to play games at a table.  He knows his capacity and he must allow for it accordingly. 

Much has happened since I last updated and once again, we are processing our choices and next steps.  The pseudo tumor and papilledema is still there but improved and holding stable.  He is still getting treatment.  We are hopeful because his vision is better. 

JA has been unkind to Parker's mouth...he had the last of 8 baby teeth extracted.  Now we wait for them to start coming in before going back to the orthodontist.  I am a little afraid to see the next bill with invisaline.

After winter break, we need to set up an appointment with the orthopedic doc to talk about what we are going to do about Parker’s left ankle.  And recently, his pulmonology test showed that he needs a bit more pressure to help him breathe at night but that was easily amended on his bi-pap machine.  Finally, he is going to need to start gait training in physical therapy.  However, now that he is “aware” that his walking is out of whack, he is paying more attention to walking.

On most days, Parker is walking better and his doc would be so happy to see him swinging his arms in the halls of his school.  See he had to learn to “walk correctly”.  He is making school about 50-60% of the week and we are so grateful that his teachers are working with him.  This is the hugest success ever for him and incredibly draining.  He is beginning to make new friends at school.  For Michael and I, this is the most joyful thing we have experienced in a very long time.  It was so incredibly hard to see his friends continue on to the 10^th grade and for him to re-enter school after taking a year off for his health and go back into the 9^th. 

The coolest thing happened last week.  Parker had one of his friends over for a few of hours.  That alone was the highlight of his break…but when the mom came to pick him up, she looked at Parker and noticed how much shorter he was than her son.  She asked if they were in the same grade.  Of course, they were not anymore because his friend went on to 10^th and he was in 9^th…I said it was due to medical that he was held back  but they are the same age, thinking she must know about Parker’s JA…but she looked confused.  I said, oh, I am sure your son can catch you up to speed when you get home.  But in that moment, I was completely overjoyed…I wanted to yell…”Do you know you have the coolest son ever!  Do you know that he is the definition of a true friend?  Do you know that he sees my son for the cool kid that he is and the fact that you don’t even know that my son has major health issues is the best gift I could have received this year?!”  I knew that this friend of Parker’s was pretty amazing…but I love this mom for raising her boy to see “people”.

So we did try the growth hormone for Parker.  It was a daily shot and with each day he injected it, the worse and worse his JA got.  He got rashes, swelling, fever, and intense pain.  By day six, it was so incredible that we were advised to stop it.  Many asked if he really needed it anyway…well, yes…yes he does…his labs show he is not making growth hormone and he is not going into puberty.  His levels are whacked.  So yes, he needs it.  We never make medication decisions lightly.  We weigh the pros and cons and then try to make the best choices with much prayer for where he is at in this moment in time.  We have suspended the growth hormone and had to take Parker in for an infusion and even that was tricky because we didn’t want to make his pseudo tumor and papilledema worsen.  Also, with this last flare, his adrenal glands went wacky again.  So, once again, we had to increase the hydrocortisone.  I am happy to report, that after 3 weeks of intense pain, Parker seems to be on the down-side of the flare.  Now he seems to have picked up a bit of a cold though…he got his infusion of his immunoglobulin today and so we are hoping that helps. 

The pain management doc didn’t really like this last flare at all.  He is pushing us a bit to proceed with the nerve ablations that we have been putting off in his neck.  We decided to wait because Parker needed a true “winter break” with NO medical appointments.  The doc also talked to us about a new procedure that he really thinks will help Parker.  It involves a remote control battery that can be up to 3 feet away that Parker would use when in pain.  We are still processing that option, however, Parker is quite intrigued.

We had special guests for Christmas this year.  Michael’s cousin and her husband came to Naples for the month of December, so we had them over for Christmas. This was our first time meeting.  It was so fun to listen to them reminiscing about their childhood.  She even made some of grandma’s cookies.  It was all very sweet to witness.  But the most incredible thing happened…her husband shared that he works for a very large pharmaceutical company as a biochemical researcher.  Here I was meeting this delightful man who was super sweet AND an incredible wealth of information.  We had quite the conversation about biologic drugs, immunology and autoimmune diseases.  I got such an education and he knew all the drugs that Parker has been on and how they work.  It was such a great discussion because this is so hard to explain to others who are not immersed in this vocabulary.  I was so thankful to have time with him and his brilliant mind.  He also talked quite a bit to Logan about going into medicine.  It was one of those moments in time when I felt like all was right…in balance…and we were all exactly where we were supposed to be.

This life we lead is with much balance, hope, and prayer.  We never know what is around the corner.  We can only live in today’s moments and be joyful for the gift of love that surrounds us.

We Have a Super Hero Comedian in the Family!

Our super hero, Parker, is the strongest and bravest kid that we know!  After two days down on the pediatric floor, he was moved back up to the pediatric intensive care unit (PICU).  Yes, we got a new “fish bowl” room to swim in.  Can I just say, the PICU needs some major funding and if any of you out there reading this know of someone who can help, please contact us.  It is the floor with the most critical children and yet this place is not attractive at all, there are little to no children friendly activities, games, art supplies, movies, etc.  They have “hand-me-down” equipment (because all the other pediatric units have been remodeled and updated) and half the beds don’t work correctly nor do they put kids in a good physical position (it was actually causing Parker to have shallow breathing and setting off the bi-pap machine and he had to get a new bed).  And the families shares a bathroom (that is disgusting) with the rest of the floor and all the public guests; and children are expected to also shower in there, if they can physically shower. 

When we were told we were going back there I just felt so defeated.  We were then told that because Parker uses a bi-pap machine for breathing at night, then he will always go to the PICU from now on and that he should never have been moved down to the regular floor.  I totally lost it…I boo-hoo’ed out in the hall until I am sure I was quite ugly.  The thought of being in these conditions every visit made my heart totally break for Parker.  I am not quite sure how I can make this floor better but I feel like we were put on that floor to see these conditions.  It feels a little like the PICU is not benefiting from funding and I am definitely going to investigate that more. The staff in the PICU is incredible and they should not have to continue to apologize to families for the condition of the rooms and bathroom situation.  I deeply believe that happy children spill over on to the nurses and that happiness can lead to much better healing.  Joy in the PICU is much needed!

Amy, child life specialist, gives a High-5 before going back to PICU

So… late in the night we were moved back to the PICU fish bowl room and they prepped Parker for another spinal tap that took place after midnight.  And they did the spinal tap right in the PICU room with the curtain pulled and the glass door open… while I stood right there in the hall…hearing the whole thing.  Parker proceeded to “help” them prep…yes, he knew what was coming and what he had to do and he completely amazed the medical staff with the terminology that he knew, with how calm he was, and with is humor.  He made them all count to see how long it would take to “put him out” and his goal was to beat his last time of 90 seconds.  This round took him 105 seconds to “go to sleep” and they wrote it really big on the board for him to see when he woke.

Here I stood as they did the spinal tap on the other side of that curtain.

As I stood out in that hall, just 7 feet away from the whole procedure on the other side of that curtain…I cried, I prayed, and I laughed as I shared with the nurse, who was so kind to stand with me, how incredible I believed our Parker to be.  The whole procedure took close to an hour and when the whole thing was done, Parker became our 2:00 a.m. comedy act.  The nurses and docs were totally cracking up at him as he conversed with us all.  And yes, we caught him on video…ENJOY!  Click here to view the YouTube Video of Parker coming off of anesthesia.

Parker’s cerebral spinal fluid (CSF) pressure has improved some; but it was still too high at 34 (remember, it is supposed to be under 20).  But last time it was 42 so this was hopeful news.  The next afternoon, we headed home and we slept hard and sound and long.  Then I resumed with our med routine (because they wouldn't let us in the hospital) and gave him his sub-q infusion of his Hizentra.  Yesterday, we were pretty sluggish.  

Neurology follow-up appointment...look, they have fish too!

Today, we went back to his local neurologist and they felt that his papilledema was still too predominant.  They want us to proceed with pursuing getting special approval to go to Bascom Palmer in Miami where they have specialty neuro ophthalmologists.  They were happy that his rheumatologist/immunologist was able to desensitize him to the Diamox and they want to start re-increasing his Topamax.  So in other words…they are doubling up the meds in hopes to decrease the CSF pressure and avoid shunting.  They shared the same concerns about Parker’s very compromised immune system and the shunt.

Our family is so glad that each of you in our lives and supporting us through all of this. And on a happy note, Logan’s migraines have improved some and he has made up all his missed work for school with only one more day left.  Bring on the summer!  May each of you have a summer full of JOY and LAUGHTER!

When You’re Stuck in a Fish Bowl…Just Keep Swimming

Day 4 in Pediatric ICU and we think Parker is making progress and may move down to main floor soon.  For those of you who have not been following on Facebook…Parker’s head pressure continues to progress.  On Tuesday, we made a trip to see his pediatric rheumatologist (because he missed his regular check-up when in the hospital for his spinal taps).   Parker’s Juvenile Arthritis (JA) is actually doing ok.  He has pain; but swelling is minimal.  Yippee!  However, his pseudo tumor’s head pressure and papilledema continues to progress.  There is much concern, that after 2 spinal taps and taking the Topamax, that this approach is not working.  Parker’s neurologist had recommended we see a pediatric neuro ophthalmologist but those are pretty non-existent in Florida.  There is one down in Miami but is not on our health insurance.  So, his ped rheumatologist sent us over to a pediatric ophthalmologist who teams with her and a ped neurosurgeon that same day.

We saw the pediatric ophthalmologist specialist who ran multiple tests and shared her concerns about his vision and she felt with his high CSF pressure he would need a shunt.  She called the neurosurgeon while we were there; and he agreed to see Parker in the morning.  So we stayed in town overnight and saw the neurosurgeon in the morning.

Parker is not an easy child to medically treat.  There are so many medical issues to consider, but I am so grateful that his pediatric rheumatologist/immunologist took the reins on this to steer us in the right direction and to coordinate with Parker’s docs because I honestly didn’t know what to do for him anymore.  The neurosurgeon agreed with our concerns about his multiple spinal taps and increased cerebral spinal fluid.  After much discussion about the complications of putting in a shunt for a child so immune compromised and a little more fragile than most, the decision was to make a very scary and bold move but under medical observation in the pediatric ICU (intensive care unit).

Topamax was obviously not working.  His vision is so precious; we could not continue down the current path.  Parker’s pressure was increasing even more and his head aches and visual intermittent blindness was increasing.  Originally, his neurologist wanted to use Diamox to treat him, but couldn’t because he has both a sulfa allergy and a corn allergy (corn is a binding agent in many meds).  But because the Topamax was not working his team felt we needed to actually try Diamox even with his previous allergic reaction. 

Parker's doc in PICU first met him at  Camp Boggy;
Nice familiar face!

So, Parker was admitted into the pediatric ICU and that night he was giving Diamox via his port because there is no corn in the intravenous form.  The doctors and nurses all stood in his room, with epinephrine shots, benedryl, and crash cart on stand-by, during the 15 minutes it took to infuse the Diamox into his port.  As a mother, this was incredibly intense…as I am sure it was also intense for Parker.  We distracted him with videos and he actually did awesome while it was going in.  I was so hopeful…then about 10 minutes later, he started turning bright red with hives; and he said his throat was feeling thick like something was stuck in it.  Everyone started to ramp up in the room…benedryl was given, then more benedryl was given, then solumedrol was infused.  He was beginning to breathe easier… and everyone started calming (except my beating heart…).  He WAS breathing and that was good but through that very long sleepless night afterwards, I was on pins and needles.  Thankfully the benedryl helped him sleep.  But with the blood pressure cuff going off every five minutes for two hours and then about every 15 minutes the rest of the night…along with many beeps and alarms on the monitors…I did not sleep at all.  We were told by the night doc that this probably meant we were going to have to do the shunt.

All that night, I was on high alert and trying to prepare for my baby to go into surgery.  By morning, the plan had changed.  His rheumy came to discuss not wanting to give up on the Diamox quite yet, despite his reaction.  I have every bit of trust in her but I was absolutely frightened.  I explained to her that I have gone into anaphylaxis many times and that this was a huge concern.  She too was concerned and she brought an allergist into the mix of docs to discuss this.  She explained his complex medical issues in great detail to the allergist and as I listened and processed, it reminded me how incredibly blessed that this doctor is caring for our child and that she totally has his best interest in mind.  Because he didn’t go into full anaphylaxis, they felt that it was worth a try to desensitize him to this drug under continued observation in the ICU.  This was really hard to share with Parker. The doc did a great job firmly explaining what was going to happen; and that they were going to keep him safe.  Then I watched the doc soften, and share so much love with her eyes and gentle caring touch and Parker seemed to understand and trust her fully.  He then told her that he believed in her because she has already saved his life.  It took every ounce in me not to burst into tears as I watch the doc’s eyes well-up.  I know she understood the enormous trust that we had in her.

Prior to starting the desensitization process, the priest came and we prayed and he anointed him with holy oil and put much hope into the process he was about to endure.  So we started again, but instead of pushing the med through his port, they had him drink it (majorly yucky).  Over the next two days, the Diamox dose was slowly increased all day long.  Parker did amazing!  Yes, he still had hives.  Yes, he still itched like crazy.  Yes, he felt absolutely miserable with fatigue and pain…but he could BREATHE.  This was really remarkable.  I know angels surrounded our child.

Now he is at the full dose and he has maintained it for a day, even under these very uncomfortable and itchy conditions.  We were just moved down to the floor he is usually on for a few days to continue to monitor how he does on the full dose.

Our family wants to express our incredibly deep gratitude to everyone who has been following Parker’s journey and encouraging us.  Systemic juvenile arthritis is a disease that needs more attention and funding and these families who endure what we go through are the most resilient individuals we have ever met.  This week was especially emotionally difficult for me because three individuals passed from this disease.  I feel so fortunate to have our smiley, funny, compassionate Parker in our lives.  We must continue to share our story, as hard as it is, so that others may understand and we can get closer to our much needed cure.

We thank all of you for your ongoing love, prayers, and donations.  We had several friends and family make High-$5 donations in Parker’s name and this has really made Parker smile huge.  When you don’t have much control over what is happening to your body, doing something positive and good makes all the difference.  Parker is thrilled to be able to help other families who have children with chronic illness through High-5-Club. (Click here:  www.High-5-Club.org) 

We are thrilled to be able to leave our “Fish Bowl” room in the ICU (pun intended) and  we will “just keep swimming”…And with every stroke, Parker gets a little stronger.  We love you all!

Brave Parker’s Second Spinal Tap

As I look for the words to explain what is happening with Parker, I want to impress upon everyone who reads this that Parker is such an incredibly strong youngster dealing with way more than his fair share, yet he is enduring all of this like a champion.  He persists…pushes himself…encourages Michael, Logan and I in such a way that I cannot find the words to match the enormous gift he is to our family.  Logan, Michael, and I have a front row seat to witness his passion for life and his appreciation for the love that surrounds him.  He is so thankful for all who are praying and encouraging him.  And so are we…

On Monday, we went to see the neurologist for a follow-up appointment.  Parker explained to the doctor that he felt he was getting worse.  He told him that his eyes were now blurry all the time and the episodes of intermittent blindness have tripled.  He also explained how his ears feel like a thunder storm and ring and it is hard to hear.  And his head had more pressure and his whole body was now in tremendous pain (surely a JA flare).  And his tongue tremors when he sticks it out… 

The doc examined the inside of his eyes and Parker asked, “How does it look in there?”  The doc replied, “Let’s just say, I wouldn’t want this in my eyes.”  Then, he turned to Michael and me and said we needed to do a direct admission now and plan on another spinal tap in the morning.  He explained that if his pressure was ok, then his increased pain may just be because we stopped the doxepin.  But if it was the same or even higher then we needed to talk about next steps which might include a shunt.  So we prepared for admission…by going to get food, because he would be on a drip until his spinal tap with no food or drinks.  And Michael went home to pack us a bag and get meds.

Last bit of lovin' prior to spinal tap.

I tried to keep Parker busy until we had to go for the spinal tap at noon the next day.  He knew exactly what would happen, since we had only been here 2 ½ weeks prior.  The surgical staff was welcoming and he cut jokes, re-introduced them to Igi and talked about how Igi has been through everything with him…he then explained the whole procedure to the surgeon and anesthesiologist.  Then, he kept telling me that I was a wonderful mom.  And of course, we took a picture together…again.

As I sat alone and waited and prayed for my sweet boy, the surgeon came in and sat on the couch next to me.  There is something about the doc taking a seat next to you to talk.  He started with how incredibly remarkable Parker is and that he is so smart and kind and that he chatted with him prior to the procedure.  He felt that Parker was handling all this better than most adults. He said that he really thought he would be better this round…he was not.  Parker’s pressure had increased in the last two weeks even more and was now at 42.  He said he took off enough fluid to get him down to 20 but he was certain, this time, the post headache was going to be worse; and that we should really just let him sleep through the first two hours of not moving.  He then went on to explain that he was most concerned about his vision.  As I sat staring at him with tears welling up in his eyes, I began to cry.  I asked about my biggest fear…could he go blind?  The answer…yes. He then said that he felt that doing a shunt in his head is quite complicated with his medical issues and that he felt that they were more likely to do a shunt in his spine or put a bolt in his head to periodically tap it and drain fluid as pressure builds.  I then said, “no, he can’t lose his vision, he has lost too much and this cannot happen to him.”  After he left, I sobbed…both his pseudo tumor and the papilledema had gotten worse.

Once I gathered my composure, I went to Parker and held his hand over the next hour and until we went back up to the room.  Well…..the plan had changed while I was downstairs with Parker.  The neurologist had talked to the neurosurgeons and they didn’t feel comfortable doing surgery until there were no other options…so they decided to increase his Topamax and send us home.  I asked why because it obviously was not working for him…but he was firm that this had to be done first.  So then I asked if that meant that he would need another spinal tap.  He just said we would cross that bridge when we get there.  He then advised us to find a neuro-ophthalmologist who could put in a sheath in his eye to protect his vision because if this pressure on his eyes continues for another 4 months (6 months total), then it could cause permanent blindness.  Unfortunately the neuro- ophthalmologist at this hospital was in the process of relocating and the next closest doc that he knew of who does this surgery is down in Miami.  So, we packed up and went home that evening to explain to Logan what was happening to his brother, to rest, and to come up with a plan. 

Yesterday, I called Parker’s rheumatologist/immunologist and explained what was happening.  They too would recommend Miami but that they also have neuro-ophthalmologist at their hospital.  So, now they are trying to get Parker in by Tuesday (since we will be there anyway).   Today, I spoke with Parker’s insurance case manager and the Miami docs are not in network.  So, if we have to go that route, we will have to get special permission.

Hospital art made with surgical instruments.

We thank everyone for giving us some space to be a family, to process all this, and to move into our next steps.  Of course, we are clearly not done with this newest battle and we appreciate every single sentiment, words of encouragement and your ongoing endless prayers for Parker.  Much love and hope.

Parker Has Incredible Strength Enveloped in Love

I believe that Parker’s life has great purpose.  He has such amazing strength and every opportunity he has, he shares his love and smile with others.  As a mother, this makes me so very proud.  But more than anything in this world, I want to take away his physical and emotional pain.  I want to somehow take away his worry and his fears…the fears that wake him through his tears at night, when his subconscious takes over.  Over these last two days we have been processing a ton.

The photo on the wall looked like this.

Last Thursday, we went back to the hospital to see the ophthalmologist to see how his eyes are doing under the pressure of his pseudo tumor.  Unfortunately, they look bad.  The doctor took a picture off of his wall of “inside the eye” and started to explain what was going on with Parker’s eyes.  Parker says, “Hey, since I was two, I thought that picture on the wall was a picture of an orange (because it kind-of looked like one).  I just thought you really loved oranges.”  Of course we all busted out laughing.  It reminded me that children can see things we don’t…

Then, Parker shifted gears and started asking a ton of questions and I could see his mind processing every single word with fright all wrapped up in his incredible strength.  I just let him ask…as I held my breath, not believing what I was hearing and witnessing…that this couldn't actually be happening with my baby.  But it was really happening.  Neither of us shedding a tear…we just listened. 

The doctor explained that because we had to go with a less effective drug (Topamax instead of Diamax), that it may not be very good at treating the pseudo tumor that is causing the papilledema in his eyes.  There is a ton of pressure on the back of his eyes. This is why his vision keeps blacking out.  He said that the back is not concave as it should be…Parker responds with “so it’s convex then?”  The doc said, “Yes, and the optic nerves and vessels are also all swollen.”  Parker then asked, “Could I lose my sight?”  The doc replied, “yes, but we will do everything we can and that is why you are here; so I can keep an eye on them.” 

He then explained that we are just trying to buy time with the Topamax in hopes that it will somehow lessen the pressure.  But …he felt there was a high likelihood that a shunt would need to be put into his brain to drain the cerebral spinal fluid to either the heart or stomach to lessen the pressure.  Parker asked if that would work; would that save his vision?  The doc said it could, but if it didn’t work, there was still one more option of doing surgery on his eye to put in a sheath to act as a protector of the optic nerves.  I know these types of procedures happen with other children but this is MY child… who has both autoimmune issues and immunology issues and any time any surgery or trauma occurs with the body, it is very scary because the body tries to attack.  But of course we will do whatever we must.

As we left, Parker went into his ultimate charmer mode and chatted away with the nurses about how awesome he looks with his purple hair and wishing them all a “happy nurses’ week”.  We proceeded downstairs to records because we ordered all his records from last week’s hospital stay…and again, as we passed the many nurses and staff he celebrated them and thanked them for being nurses.  He gave so many high-5s and cheered on many people; and I am certain he was coping at the same time.

After we got the records, we went to see my mom and grandma to deliver our mother’s day love.  His great gram asked how he was doing, and he busted into tears.  Then, he took a few deep breaths and said, “Give me a minute, and I will explain.”  Then, he proceeded to tell them both all about his doctor visit and smiled and said, I’ll get through this.  It will be ok. 

Laying relieves head pressure.

When I got home, I read the entire stack of medical notes from the hospital stay last week.  It confirmed all that we already knew…but it also had two pieces of info that concern me.  Parker has a lesion on his right frontal lobe…we knew this…but we didn’t know that the radiologist recommended repeating the MRI with triple contrast.  And there is a pars intermedia cyst on his pituitary gland.  They did an extra MRI of his pituitary because he is supposed to get growth hormone.  Endocrine told us that if anything is on the pituitary, then he couldn’t have the growth hormone because the growth hormone causes everything to “grow”.  This additional bad news is very hard to process as the growth hormone was going to hopefully help multiple issues.  I did call the doc about all this but of course we have to “wait the weekend”.

So now, we juggle our schedules so someone is home with Parker because his eyes feel a bit like a ticking time bomb.  He is having more head pressure and nausea.  If he begins puking, we rush to the ER.  We have to trust that things will get better.  We have to have faith that we are moving with tiny steps in the right direction.  We ask that all our friends and family continue to pray and surround us with their loving support.

Yesterday, I was at a “leadership conference” for work and one of the speakers, James Robbins, said something that really hit home for me, “Understand the power of 1,000 tiny steps.”  It reminded me that with every tiny step that we make with regards to Parker’s health, it is an accumulation of steps in the right direction.  But I also couldn't help but think…I also understand that power of the many who rally around our family and help carry us through this journey.  That is powerful love.

Wearing our blue for arthritis awareness month - May.

Almost a Year… 9 months with No Hospital Stay!

Many of you know that we have been at All Children’s Hospital since Monday, as I have been updating on Facebook…but it just occurred to me that some of you are NOT on Facebook…so here is the scoop…

I really do believe that everything will be ok…and I trust that prayers will be answered and that this will get better, but tonight I am giving myself permission to be really really furious with autoimmune, auto-inflammatory, and immunology diseases!  They really do complicate our little guy’s life big time!  And it is totally not an easy road!

Last week Parker shared with us that he has been having some vision issues (he actually was having issues for several weeks but didn’t say anything).  We went to the ophthalmologist and Parker shared that he is having blurriness and  intermittent blindness when he moved his head/neck or changed positions.  He is also having headaches and nausea.  The doc tried to decrease his fright by saying it was likely a med side effect or high blood pressure… until he actually looked in his eyes.  He is having papilledema (swelling on the back of his eye nerves) and several things can cause this.  So he told us we needed to get in to a neurologist.  We tried all week to get a neurology appointment and even the ophthalmologist tried …but before we could get an appointment, Parker’s intermittent vision loss was increasing in frequency and length of time.  It was progressing.  He is also having fevers daily for about a week that come and go.

So after calling both the ophthalmologist and the rheumatologist, we went to the ER.  Rather than going all the way up to Shands Hospital we decided to go to ACH because the ophthalmologist and neurologist were at this hospital.  An MRI was done and ruled out a tumor and MS.  Good news.  But when looking in the eyes, Parker definitely has significant swelling on the back of his eye and it was neither uveitis nor iritis (two eye diseases that sometimes happen in conjunction with JA). 

Parker took this just before his spinal tap.

He was admitted and a spinal tap was done the next day.  The spinal tap confirmed that he had increased pressure.  Although the spinal tap was used for diagnostic purposes, the hope was that it would also relieve some of the pressure, thus the swelling in his brain.  They removed some of the cerebral spinal fluid but as they did, the pressure tried to keep shooting up.  They did remove some and they actually hoped he might continue to leak some from his spinal tap sight…but he didn’t really do this.  The neurologist explained that he is one of the “rare kids” and that this might be a bit challenging with things getting worse before they get better.

He confirmed he does have what is called a pseudo tumor (increased cerebral spinal fluid (CSF) pressure).  When he looked in his eyes today it actually looked worse.  He also said that even though they removed CSF, it was probably already reproducing. 

He pulled the MRI pics up on the computer and gave Parker and me a little tutorial.  He also said there was a small lesion on his frontal lobe, but he is not overly concerned with that at this time.  The plan was that he would be discharged today on Diamox...we even got the A-Okay from rheumatology.  But then we found out, nope…he can’t have it because it is related to sulfa drugs which he is allergic to.  So then they thought of an alternate (less powerful med) to possibly use and then they said no…it can’t be given with one current meds.  We were told at noon today that we were going home, only to find out at 8:00 pm that NOPE…we have to stay and wait to consult with pharmaceutical in the morning.  This may seem like no big deal…but oh my goodness it is such a big deal because if they cannot bring this swelling down then it could cause permanent damage. 

But the even bigger deal is the joy all this stole from Parker this week.  He put money down to reserve the new spiderman game way back in Dec. and it came out the night we were in the ER….Michael promised to take him to get that game.  He was so looking forward to playing his super hero game this week and then when we didn’t get to go home again tonight that was a really hard blow.  I know in the scheme of things this is small…but it is so big too.  And then there is the upcoming walk...it is Saturday!  He sooooo wants to be there.

Everyone is asking why this happened…they don’t know for sure but it was likely the perfect storm of disease, long term steroid use, and weight gain.  This poor kid has not grown in height since 3^rd grade and is now in 9^th.  Yet he has more than doubled in weight on his small frame.  And it doesn’t help that he is still on hydrocortisone for his adrenal issues because that can make the CSF pressure worse. 

In the midst of all this, we did get some good news…The good news is that he failed his growth hormone tests and he is supposed to start growth hormone soon.

So this is why we drive everyone crazy asking for donations for our JA causes…this is why we walk in the Arthritis Foundation Walk!  This is why we pray so hard and continue to have HOPE!  This disease has such an impact on our family.  We cannot do this alone and we are so glad we don’t have to.  Thank you doesn’t quite seem like enough…we are grateful to each of you and for what you bring to our lives.

Click here for our Walk Team Page:  Parker's Purple Playas and Logan's Dream Team