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!