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!
Some days my brain feels like its on overload. Today is one of those days. Mixed feelings fill my heart, giving me a
sense of emotions-on-overdrive…I just went from tough mean-mommy, to having a
sense of stabbing sadness of what Parker has to endure if he wants to
walk, to my heart breaking knowing that he is telling us (PT, nurse and me) the
complete truth that he hurts so very bad, to knowing I must muster up that
tough love and MAKE him do what he doesn’t want to do because he knows it will
cause more and more pain… I had to make
him put those arms with flaring shoulders and wrists down and wiggle and scoot
and drag those million-pound legs/feet and lift himself into his
wheelchair. Then the torture continued
as we had to then get those legs off that bed and down onto the wheelchair foot
rest as tears rolled down his face and “I hate you all” came out of his mouth…But…
the one emotion that is emerging more than all the rest is incredible pride in
the strength and bravery that Parker is enduring this…because he DID it, he
really DID it with splints on his legs/feet, cadaver bones piecing him back
together in alignment, and pins criss-crossing through his bones holding it all
together and in place. 
This hospital does not have pediatric rheumatologist; and
so the medical staff rarely work with kids with juvenile arthritis. So, to have a kid like Parker and all his
complexity…well, let’s just say, that all have learned a ton this past week and
they have been absolutely open to learning.
I actually really appreciate their interest and questions, verses just
pretending that they “know”. It is very
refreshing and Parker feels really smart as he educates them.
So if you are reading all this…YOU are one of those
really special people who care a whole lot.
We so appreciate all the out-pour of love, support and prayers we have
received this week. It truly has powered
our entire family and we really needed it.
Many of you have asked how you can help…there are two ways you can help both
us and children with JA. One, our whole
family is very involved with the National JA Conference this year because it is
being hosted in Florida. If you know a
potential donor, in-kind sponsor, or you would like to volunteer with either
prep or at the conference event, please contact us or Susan Cuellar (Florida AF
office: 813-968-7000 or 1-800-850-9455
x11) and tell her you know us and how you would like to help. And two, as you
may know, the walk will be this May and we would love for you to sign-up (it is
free) and walk alongside our family on “Parker’s Purple Playas and Logan’s
Dream Team”. (Click here to sign up on our team.) And of course, we also welcome
donations to our walk team, too because we definitely need more research
towards a cure, to send kids to camp, and to scholarship families to go to
conference.
