Greg and Tan's Key West Adventures - Day 1

Key West Trip Day 1:

After an early morning rise (3:30 am) Greg and I left the house ON TIME and arrived at the airport at 6:10 am. Not wanting ro repeat the activities of our date on Sunday (lost the car and had to get security to find it for us) we decided to take a.picture of the parking space when I realized my phone was still in the car! 

Fortunately we hadn't gone far. In the airport we went. Check in was easy. Greg got held up at TSA because he had an aerosol can in his backpack lol. We are now in the newly renovated terminal waaaayyy down on the end. 

American Airlines has these really nice chairs with a footstool by the windows and you can watch the planes depart and arrive. 

Greg took the opportunity to get a quick power nap. 

Waiting to board now …

"It has landed many-aaahhhh thousands ..."

We arrived at Key West Airport safe and sound. The flight attended told us to prepare for an "accurate" landing. Ummm, ma'am, what other type of landing is there?

 The weather was warm, cloudy and humid. We walked to get our rental car and were met by a rooster who was crossing the street. Apparently wild roosters are a thing down here, they're all over the place! Got the rental and drove to the resort. We dropped off our bags and went to find some lunch. We ate at The Conch Republic Seafood Company and had yummy conch fritters and a spinach salad. 

The rest of the evening was exploring. We drove around Key West a few times then decided to drive up to Marathon.

 Marathon is considered a "middle key" and Key West is in the "lower keys" of all the Florida Keys. It rained a bit but not long.

 We visited the time share property we stayed in when we came 15 years ago! They now have charters off their pier and there were sharks swimming in the waters!

Back to the resort we went to make some exchanges, then off to find something to eat (yes more conch fritters. These weren't as good but the lobster roll was excellent. )

 Afterward we got some ice cream from a shop that makes it homemade. They also have chocolate covered Key lime pies. Why does that sound so fat?

Then we walked the pier and one of the resorts had a live band. The lead singer was giving Otis vibes from Martin! We also watched a show by a fire handler and took a pic with her.

Now we are tired and waiting for the bathroom shower to get fixed and drained. Never a dull moment. More adventures tomorrow!

Home Again, Home Again ... Now the Real Work Begins

On Wednesday evening I began to hear comments about Tre' possibly coming home on Thursday.  The hospitalist was fine with his progress (vitals, overall wound care, etc.) but the orthopedic surgeon wouldn't be in until Thursday afternoon to give the final approval. Additionally, physical therapy was very satisfied with his progress with his sitting up.  An early release was auspicious but, I knew better. Tre' had an unexpected hospitalization back in November and I had a series of heartbreaks when I was told that he would be released, only for the release to be delayed not one, not two, but three times.  I decided to be like Mother Mary and "ponder those things in my heart" until I was actually signing discharge papers.

Banana Pediasure is king

Thursday morning Tre' woke up and said he was ready to eat - I was elated! I ordered his breakfast (cream of wheat) with applesauce and trotted merrily to the cafeteria to get a banana for his cereal.  Now, anyone who knows my child is well-aware of his infatuation with bananas.  I don't know if it's a generational thing (my paternal side of the family, the Smiths kept bananas on deck at all times) but this kid has a "banana jones" - bananas to eat, bananas in the cereal, banana ice cream, banana Pediasure - when you have a kid on the Autism spectrum with eating issues, and you find they like a particular food, you tend to go overboard with it.  In any event, I was mortified when I got to the cafeteria and was told that there were no more bananas - in the entire hospital! 😞 Mommy panic turned into mommy guilt as I realized I should have brought some with me when we came.  Lordt.  Rather than go through the trouble of having him refuse the meal I decided to start with applesauce.  Kris Tibbs taught me about the BRAT (bananas, rice, applesauce, toast) diet many years ago, and since this was his first meal in a few days, applesauce was a safe choice.  He scarfed it down happily and had a banana Pediasure.  Mission accomplished.

Singing like Mary Mary, "I'm walking, I'm walking, I'm walking ..."

He wasn't happy about the steps. 
Whatever boy, get up those steps so we can go home.

The PT room was financed through a generous donation from
Ryan Kerrigan of the Washington Redskins.

Physical therapy came again, and the realization that hard work was his key to exiting must have kicked in because the boy was moving!  He passed his 100 feet walking goal, walking from his room halfway to the PT room.  He also passed his goal of walking up and down the steps.  With both of these goals accomplished, PT released him from care, and we were one step closer to walking out of the door.  Next came occupational therapy, ensuring that we positioned him correctly when transferring home and that he had exercises to help him reach above his head so he could get back to baseline with self-dressing and self-care. After a positive session, we were released from OT.

Ready to remove the drain

I decided to take some laps around the floor to get my steps in.  I had been doing a lot of sitting and laying around the room.  It felt good to get moving.  But of course, as soon as I left the room, I missed the surgeon! 😳 As I took a lap around, I spotted her ponytail walking away from Tre's room.  Of no you don't lady!  "Dr. Kelly!" I called.  She didn't hear me.  I walked faster, just below a run.  "Dr. Kelly!"  I knew I looked like a mad woman, a stalker even?  Hopefully, I wouldn't get tackled by security - that would not be a good look. 😂 She heard my voice this time and turned around. "Oh hey, we missed you in the room, do you want to go back and talk?"  (Please, I've been waiting for this conversation since last night!) "Sure," I answered hopefully.  We returned to his room, and she told me that everything looked good.  They actually like to get nonsick kids out of the hospital as soon as they can because the longer you're in the hospital it increases your chances of getting sick.  The plan was to take the drain out of his back, seal the wound, and see if it leaks.  If it did not leak, we would go home that day.  If it did, he would have to stay another day.  So the hospitalist took the drain out, and we waited.

Auntie Lex comes to visit!

The Pike boys are always camera ready - they have had lots of training!

We were happy to be visited by my good friend Alexis and her two boys, Malachi and Aiden.  Lex and I were able to catch up while the boys sat and entertained themselves. Auntie Tanya felt compelled to offer the boys some snacks - they made me happy and obliged. Then they were more than willing to take pictures with Tre' - so sweet!  The boys were a welcomed distraction and helped the time move quickly.

Finally, the nurse practitioner came back - the area near the drain was dry, and we were cleared to go home!  I don't think I have ever packed my bags so fast!  I texted hubby to tell him we were on the way home.  He called me back immediately to confirm - "Do my eyes deceive me?" he asked, laughingly.  "Nope!" I answered we are on our way!  We briefly tried to synchronize our departure with his picking up our other son from rehearsal not too far from the hospital, but we quickly discarded that optimistic feat.  We decided to wing it and let it play out.

Wall art inside the Cardiac Intensive Care Unit (CICU)

Our nurse (one of PGCPS' very own) brought a cart to load all of my things on, but I had one final assignment.  My aunt, who used to teach at a local private school, contacted me about the grandchild of a former teacher's assistant of hers.  The baby was at children's awaiting a major surgery next week.  She was in the Cardiac Critical Care Unit, was four months old, and was a twin.  Auntie asked if I could visit with the baby/parents and pray with the family.  When the beloved auntie who lives in Arizona puts you on assignment, you make sure it gets done!  Plus, you all know how much I love babies.  Between trips to the pharmacy to pick up Tre's medications, I was able to visit the little one and her daddy.  She had the sweetest little face!  I attempted o comfort Dad by telling him of our time spent at Children's 15 years ago.  He said they knew of her heart ailment while she was still in utero.  They prayed for a miracle but didn't get it, but at least they still had her.  I assured him that he did, in fact, have his miracle, but as I have witnessed with my own children, miracles don't always come in the form or timeframe that we expect or want them to come.  Most are not instantaneous, some take years to manifest.  He smiled and nodded in agreement.  I put one hand on his shoulder, another on the baby's tiny little foot, and prayed for the baby, her surgeons, her twin sister, and her parents - that their marriage would be healthy and able to withstand this difficult time.  He thanked me, and I told him I was looking forward to hearing about her progress and surgery outcome.

With my assignment completed, I returned to the room, signed papers, dressed the boy, and marched him right to the elevators and to my minivan.  Our nurse assisted with getting the things to the car (remember I had that primo parking space?)  I thanked her and started the car, appreciative of the complimentary parking pass given to us by the concierge.  As I left the parking lot and turned onto Michigan Avenue, Greg called me.  It turned out he was two cars behind me! After a quick detour to CVS to pick up one last prescription and hitting a drive-thru for dinner, we arrived safely at home.  Daddy came to the car to scoop up his baby boy and usher him into the house.  "Littlebig" brother Quinton and Aunt Neta were so happy to have him home.  Exhausted, I mustered the energy to bring in all the bags and our additional equipment.  It will be a long road to recovery, but being home and able to sleep in my own bed made those thoughts irrelevant.  While sitting on my couch, I felt all my stresses melt away.  For so many other procedures, things had not gone the way that we planned and additional time in the hospital or near-fatal circumstances presented themselves. We have endured sepsis, elevated heart rate, extreme hypertension, and a blood transfusion to name a few. Not this time.  This time we were home and the procedure and estimated recovery had gone even better than we had planned.  Praise God!

The Day Mama Bear Showed Up/Moving Day

Tre' on the move!

I knew it was going to happen.  It always does. Day three here at the hospital and Mama Bear showed up.  I didn't invite her but she's always there with me, standing over my shoulder, watching how policies and procedures are being followed and comparing them to the expectations.  Don't get me wrong, there is a reason that Children's National Medical Center is in the top five pediatric hospitals in the country. Technology, patient care, inpatient and outpatient services, medical staff - they are all top notch as far as I am concerned (and I have been "with" this hospital for 15 years as a parent). But in ANY organization one must always be vigilant and "be the voice" for yourself or your loved one to ensure appropriate care is implemented.  Without getting into detail, let's just say that a better understanding of my expectations is now held by all decisionmakers in Tre's case and I anticipate that the next two days of our stay shall go without incident. And Mama Bear didn't have to go into a full rampage, but she did bear her teeth and show her claws just a bit. 😏 

Today was unusually quiet.  Tre' slept most of the morning.  And when it was time to have physical therapy he was difficult to rouse and was almost like dead weight getting him out of the bed.  I was concerned.  I spoke with the anesthesiologist who saw him before surgery and was just as concerned as I was.  They decided to switch his muscle relaxer so he wouldn't be so groggy.

It apparently worked because when PT came this afternoon he was much more easily roused although he was still a bit groggy.  I offered to go to the van and get his wheelchair so we could possibly sit him up in it.  When I got back, to my surprise, the boy was up and taking steps with a walker! 

You'd better get it Tre'!  

He walked from one side of the bed to the other but that was a major step (literally!) He actually tried to walk out of the door! 😂 Typical - he's always trying to make a break once he gets some mobility.  No son, not yet.  Come back and have a seat.  We got him positioned in his chair nicely and he looked so tall and upright. 

Sitting up nice and straight

Visiting the fish

Smile Tre'! No? Okay.

We took him for a ride around the unit and visited the fished tank.  We were so excited.  He was over it.  So we returned to the room.  The physical therapist told me she wanted him to tolerate sitting in it for at least one hour.  He sat up for four hours! Such a rockstar! Towards the end he was falling asleep, I kept asking him if he wanted to get in the bed and he kept telling me no.  After a while, I insisted that he get in the bed.  He is now out like a light.

Today was a great day for visitors.  We held court with the always wonderful Catherine Larsen Coley, who was a PT resident when Tre was about three or four.  She is still here and gave me a lot of great options for post-hospitalization physical therapy.  She is one of a host of caregivers that we still consider to be a part of our extended family.  We also were visited by my godbrother Greg who not only brought his nephew Brian but a balloon for Tre'.  What he didn't know is that Tre' is a balloon connoisseur!  Actually, it's really just balloon string so we will see how long this one lasts!  Little Brian was delightful, a lean, thoughtful high school junior.  Once his Dad joined us we were able to compare notes about his stays up here at Children's as well. 

Although the morning started a little rough, it ended with a bang.  One more full day tomorrow and then - EMANCIPATION FRIDAY!

Right Place, Right Time

Day two of our hospital stay was quite eventful!  Tre' had a really great night save a few issues with his blood pressure.  Once he got his medication, he was good to go.  He slept most of the night until about 5:00 am, and then he called my name.  "Mommy," I heard him call in the midst of my sleep.  His voice crept in through the cracks of my subconscious, and I somehow realized where I was and what I was there for, in spite of not being fully awake.  I jumped up, "Yes Tre, I answered.  He just looked at me.  I'm not sure if he just wanted to make sure I was still there or if he changed his mind about what he originally wanted.  Either way, I wasn't ready to be fully engaged, especially after having to get up at 2:30 am the day before.  "Okay Tre, just let me know if you need me," I told him, then laid back down for about 45 more minutes.  Once the nurses and doctors started to do their rounds, it was a wrap.  It was time for my/our day to officially begin.

When the nurses come in and change shifts, I have determined it is my job to eavesdrop in on the conversation whenever possible.  Call me rude, but I want to ensure that accurate information is being communicated about my child. If not, I must correct those misconceptions.  For example, the night nurse told the incoming day nurse that Tre's "tremors" were a symptom of arthrogryposis.  She saw it and looked up the condition to determine what the cause was.  It would have been easier to just ask because he doesn't have "tremors."  I'm sure he was just cold.  It was a great reminder for me to never assume and to stay "Low on the ladder of inference."  Explicit data (like answers to questions) collected from the primary source is always more reliable.

Yummy apple juice

The doctors eventually made their way back and remarked about how well he did last night. The surgeon even commented that the PACU staff who prepared him for surgery fell in love with him because he was thanking them for taking care of him.  "He was thanking us, thanking the Lord ..." I hollered.  No doubt they were caught up in the midst of one of the daily sermons he puts on verbal repeat.  I chuckled.  They told us that we were definitively on track for transitioning to the medical floor for the remainder of the stay. Time to move him to clear liquids and foods today.

Physical therapists ready to work their magic

"Logrolling" is essential so that you don't twist the back and damage the sutures

And he's up!

Shortly afterward, the physical and occupational therapists came by for a session.  He rocked once again, demonstrating his reach and they were able to get him up to sit on the edge of the bed. We were careful to give him a dose of pain meds before the session so he could tolerate it well, which he did.  They were pleased and told us they would see us again this afternoon.

Not long after, there was a ruckus in the space next to ours.  The PICU room we were in was large and could accommodate up to three patients.  We had only one other roommate, a tiny three-month-old who was in for RSV, a common but very contagious virus that has severe effects on the respiratory systems of infants.  The nurse furtively asked for help from a staff member, and within moments 20 staff members were at the baby's bedside!  His mama wasn't there, having left the night before.  I was able to deduce that the baby was in distress and after the team gave him manual interventions through "bagging" him, they eventually had to intubate the little one.  I was frozen, having not only experiencing a child who had RSV but also having him intubated not one but four times as a small child.  My heart broke for him, and all I could do was pray.  I  posted about it on FB, and my entire village went into prayer for this baby.  Maybe this is why we were here, on this day, in this room, at this time.  Was I appointed to stand in the gap for the life of this baby?  His mom came about an hour after e was intubated and completely broke down in tears, wailing and sobbing through her pain.  I was compiled to get to her, comfort her, put my arms around her.  But with HIPPA laws being what they are, I didn't want to overstep my bounds or be too invasive.  I also knew that she did not speak any English, so I needed an interpreter.  When things got quiet, I stepped outside my curtain and greeted her.  It turns out that her husband did speak English - he was my interpreter!  I gave her the biggest hug I could muster without smothering her.  I explained that my son had been intubated 4 or 5 times AND had RSV and he is doing really well at 15 years old. I told her that her baby will be okay and that I am praying for him. They thanked me profusely. Her eyes still held a lot of pain, but I could see some relief.  ASSIGNMENT COMPLETED!  Shortly after that, we were told that it was time to move to our new room.  Well, what do you know?  Timing is everything!  

Moving on up, literally, in the elevator

New room on the 5th floor

Before moving to our new room, we had a great visit from one of my sweet STA mommy-friends who happened to be in the hospital today.  She helped us carry ALL OF OUR STUFF to the new room.  We got settled, and Tre' had another PT session where he not only stood up but took a few steps to use the bathroom as well!  He DEFINITELY looks taller too ( little brother's not going to like that lol).  He's currently sleeping like an angel, worn out from the day's excitement.  And now, instead of dreading the stay, I am looking at this as an assignment and looking forward to other opportunities to give to others who might be in need while we are here.  

Sleeping peacefully in our new room

Bring it on!

Tre's Big Day 1.7.19 (Late Edition)

Hey family, this is just a quick note to let you know Tré did EXTREMELY well during surgery! He had very little blood loss and did not require a blood transfusion which sometimes happens with this surgery.  The surgeon literally had to rebuild and reshape some of his vertebrae BUT it is even better than it was prior to him needing this surgery. She created a more natural curve in his back that will help him stand more upright and relieve some pressure in his neck. He has some swelling in his face from being flipped upside down for nine hours but that is going down already. Mommy got his cozy blanket for him, he has his ribbon and asked for his iPad so he is CLEARLY on the road to recovery! 😂😂

Tre is reunited with his "colorful ribbon" 

The iPad

The Prince and his princely blanket

Thanks to all who have checked in through FB, phone call, text, Messenger, email and prayer. Tomorrow we will be leaving the PICU and going upstairs to a private room.

Day 1 down, four more to go!

Tre's Big Day - 1.7.19

Singing at 4:00 am

Today was the big day - the day for Tre's final (we hope!) spinal fusion.  Tre', of course, has endured all of this hoopla building up to today like a champ.  The rest of us have been a wreck!  😂😂 Last night we prayed together as a family and 75% of the family was in tears.  Tre, on the other hand, was looking around at us like, "What's wrong with you three?  I've got this!"

The thing about having a child diagnosed with Autism is, they have their own little quirks.  My child perseverates on music, noises, and sound clips.  That, combined with his unabridged love for music makes for some pretty great sound bites.  I got out of bed at 2:45 am so that we both could be ready, packed, and loaded in the car by 4:30 am.  Tre was his usual singy, chirpy self.  This morning, his song of choice was "Justified," by Smokie Norful.  He kept repeating this part:

"If it hadn't been for God (God did it) you wouldn't have made it
Hey, don't get confused about who kept you, hey (God did it)

When the enemy said that I couldn't, God did it (God did it)
When my haters said that I wouldn't, God did it (God did it)

Hey, I thought we'd never get out of the poor house but (God did it)
I thought we'd never see the White House but I'm claiming it (God did it)

Hey, and if you be honest, He's been over your house (God did it)
Every grateful heart just bless his name (God did it)

Who delivered you? (God did it)

Be honest about it, who kept you? (God did it)

Come on and testify who brought you? Hey! (God did it)

Now was the boy preaching or was the boy PREACHING?  I just love him!

Arriving to the surgical center

Tre' and I  arrived at Children's National Medical Center at 5:15 am, 15 minutes before our assigned arrival time of 5:30 am.  It was so early I was able to get a spot right in front of the elevators. The back of my van had so many bags it looked like I was going on vacation.  From the parking lot, to the front desk, then up to the surgical unit we wen. The feeling of dread was heavy on my heart. I don't know why this one feels so different - Tre has had this particular procedure once before, and smaller versions of it literally dozens of times. Even when you KNOW the procedure is absolutely the best thing for your child, the thought of bringing them to the hospital to be cut open feels like bringing a lamb to the slaughter.  The child has absolutely no clue of the seriousness of what is about to happen.  The adult, on the other hand, has ALL the information.  

Tre' with Ms. Laura

 Next, it was time for registration, vitals, and brief chats with all of the doctors.  Miss Laura was there to register us.  She has been working in the surgical care unit since Tre' was an infant.  It's always reassuring to see a familiar face when you walk in the door.  She's like that auntie that sits you down and makes you get something to eat before you leave the house lest she be offended (Now I KNOW you're going to eat some of this pie right? 😳)  She gave us our pager (which I will keep all throughout his surgery) and sent us back to wait to be called.

We got a Zoom conference call from Auntie Vonda, who generally is here for every surgical procedure he has ever had, but couldn't be physically here due to other obligations (it is important to note that in Black culture, every "aunt" is not necessarily by blood, some are aunts by love but are just as authentic and important as your direct relatives. Auntie Vonda happens to be the latter.)  Auntie was not going to let distance be a factor in her tradition when technology is so available!  It was good to talk to her and keep my mind occupied.  A member of the medical advocacy field herself, we reviewed our today and she inquired of his sock status - she has gone OFF on nurses who have not had his feet properly covered! I assured her that he had a pair of socks for every day this week and his feet would not go naked - she was happy and I stayed out of trouble!  Sensing my mood, she prayed with me and helped me reset my mind.

It was good to, because once we got off the phone with Auntie I called my youngest morsel of goodness to check in on him.  Today was his first day back to school from winter break.  He had a rough time last night - his level of empathy is tremendous and he was really concerned about his brother.  He needed some extra hugs and reassurance before we all went to bed, but he still had a hard time getting to sleep. I definitely didn't want to portray any uneasiness to him because he can pick up on my mood like a little Mommy barometer.  There was no indication of that this morning in his voice or his affect at all and all signs point to him having a great first day back to school.

Getting weight

Tre's trusty "colorful ribbon."

Not long after, the pager sounded and vibrated, startling me with its sudden vigor and volume.  We went through the doors and in the back for surgical prep - changing clothes, taking vitals like weight and temperature.  I had to make it clear to the nurse that Tre's "colorful ribbon" was extremely important and that he has been allowed to take it into the OR with him up and until he is put to sleep.  This helps to keep him distracted and manage his anxiety as well.  Once he goes out, they put it in a specimen cup and return it so he can have it when he wakes up.  He did well while he waited for me to speak to Dr. Kelly (his orthopedic surgeon) and the various nurses, anesthesiologists, radiologists, and such as they peppered me with questions. We discussed giving him a PICC line that he will keep for the week so that they will have easy access to his veins for drawing blood and giving meds and I was all for it. Anything to avoid turning him into a pincushion.

Finally, it was time to part ways.  He asked to use the bathroom just before it was time to go.  When we returned, the resident anesthesiologist was waiting for him, ready to wheel him back.  We could barely get him up on the bed before he was taking him into the OR.  I made a movie of him going back to help keep my own spirits up.  He was cool, calm, and collected - a great example for his mommy.  I am always learning from him - his strength, his resilience, his resolve.  I look forward to taking in all of his goodness as I sit and wait for him to emerge from the OR, victorious as usual.