Thursday, June 5, 2014

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!


  1. love the dance to your beeps Parker!! :o) Your a rock star to us! Love you!

  2. Love you Parker. Hang in there... hang tough family with the tough stuff you all are made of!!