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!

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.