Recovery Mode!!

Wyatt is in recovery mode now.  Every week day, he spends a half day at Kennedy Krieger for PT, OT, and education (a teacher catching him up since he missed time in school for his infection). They work on Algebra II and his summer reading- The Crucible.  (he’s not thrilled about this part 😂).  Wyatt is dealing with some stomach issues that landed him in the ER.  The antibiotics are tearing his stomach apart!  He has gastritis and about 3 more weeks of two pretty powerful antibiotics left to total 3 months worth.  He’s dealing with it though- Malox is his friend! Today he had his therapy at the KKI pool! This past week, I have been taking him on a tour of meaningful places to me in Baltimore City.  We went to the house where my Dad grew up- 25 Luzerne Ave, my Dad’s favorite deli- Attmans.  We also went to Patterson Park where my Dad played all day long when he was a kid.  Today we went to the house where my Mom grew up- 1417 Riverside Ave.  It’s the best street in all of Baltimore!  Begins with a park- Federal Hill and ends with a park- Riverside Park! Directly across the street from her house is St. Mary’s Star of the Sea Catholic Church- where my Mom and Dad were married and where she went to elementary school.  My grandmother played many Bingo games there!  I have fond memories running around the block as a kid, going to the corner store and the park to play! I took Wyatt down Light Street, Battery Ave, Inner Harbor and ended with a visit to see my Dad. Tomorrow’s agenda- Matthew’s Pizza, my Dad’s favorite pizza place in the city! Wyatt’s perseverance, positive attitude and willingness to try everything to get back to himself has been admirable.  He has been through so much- his spine surgeon said it was one of the most complicated cases and his recovery has been amazing.  Our last visit with him this past week, his surgeons took pics of him to share with his colleagues! 

Visits and Getting Back To Normal!

Wyatt and our family are very blessed and appreciative for our friendships and for the CHC community.  Today, Wyatt’s Assistant Principal, Mr. Fan, visited our home on a Friday afternoon.  It’s a visit that I’m sure Wyatt will remember forever! 

The past week, he also had a few friends visit!  Thank you Miguel and Brooks! 

You know Wyatt is feeling better when he is back selling on eBay and expanding his collections!  

ER and a Carnival

Wyatt Update- ER and a Carnival… Lately Wyatt’s stomach has been hurting.  Yesterday the pain was intolerable. He stopped eating and drinking.  After we talked to his pediatrician and GI, we took him to the ER.  He was diagnosed with gastritis from all the medications.   His stomach is irritated and inflamed.  Malox is a wonder drug!  It made him feel so much better. We changed up how we are administering the medications and he feels so much better.  

In fact, today was his best day yet!  Tonight we went to the carnival and won a liver cell 😂😂. He started walking independently today- short distances and just feels more like himself.  He started wearing his favorite black hat again too!  It’s been forever! 

Today was also the second day of the intensive therapy program at KKI.  Every day PT and OT. Plus there is an educator at KKI that is going to catch him up on Algebra II and the Crucible (his summer reading).

Coin Pushers and Snowballs!

He’s back at it! Coin pushers and snowballs! Outpatient therapy at KKI begins June 24th, five days a week for four weeks.  Wyatt has been laying low, just relaxing and healing. Yesterday he slept until 11:30am!  Night and day from the hospital.  When they gave us the option of inpatient at KKI or intensive outpatient at KKI, I knew I picked the right choice!

Home Sweet Home

Wyatt is HOME and instantly feels much better.  One month in the hospital, three weeks in the ICU and 4 surgeries, many MRI’s and a lot of poking and bandages and “sticky things”removed.  So so much.  One of the toughest hospital stays.  Thank you for all your kindness, support and prayers.  Next up- intensive outpatient therapy at Kennedy Krieger and lots of fun to catch up on!  Still dealing with pain but it has improved.  There truly is nothing better than being at home❤️❤️❤️ 

Home tomorrow

This day last year it all began- his first back surgery.  Wish we could rewind everything.  Good news is that Wyatt is going home tomorrow- after one full month in a hospital bed, three weeks of it in the ICU.  We are thankful for this day to come but are all just soooo tired of the hospital.  Hopefully just a boring, relaxing, healing summer ahead.  

Breaking Out!

We broke out and went to the courtyard to visit the Koi pond! Ortho and Neurosurg signed off today- cleared us for home! MRI last night was unchanged which is good.  However, Wyatt decided to stop eating because food got stuck in his throat and it was a scary experience.  As a result he had a swallow study today- it showed normal swallowing but when food travels down his esophagus, it may have a retrograde flow.  All this means that he has to drink more and bite his food in smaller sizes.  He is still not eating a single thing though for the past two days.  Hopefully he will start eating.  Looks like we are going to outpatient intensive rehab at KKI as our next steps.  Wyatt was so brave today. He had this big sticky bandage ripped off from his head today which pulled off a big chunk of hair.  I can’t imagine the pain.  

Peace Out ICU!

We are out of the ICU 🎉🎉🎉 Currently on the adolescent floor now.  His head bandage came off today.  We have an MRI at 3am.  If all goes well, possibly home very soon.  He is still dealing with pain and the need for oxygen.  All that is manageable at home.  

Successful Surgery!

Wyatt’s surgery was successful!!  After a very long 2.5 weeks in the Pediatric ICU, it looks like we arrived at the best case scenario.  It’s the first time in his life since he was just a couple months old, that he no longer has a shunt.  There is a capped off drain in his ventricles and if he develops signs of hydrocephalus, the drain can be opened and tapped and/or he can get a shunt.  It’s been a total tune up for Wyatt here at the PICU.  Early on the docs thought he reherniated but he didn’t, we learned why his arm is weak, we experimented with various pain meds to find the right ones, we addressed the infection and probably a few other things I can’t think of.  They looked after his entire body- including social emotional and diet. Today we will spend in the PICU and then move to the step down floor.  After that is unknown- may be inpatient rehab, outpatient intensive, or something else.  After surgery, Benji and I were waiting outside the Wyatt’s room while the nurses and doctors were getting him situated. When there is a code blue- EVERYONE comes running, the blue light flashes outside the room and there is an alarm that sounds on the floor.  Well that happened when we were in the hallway- and it was Wyatt!  Luckily someone in the room pressed it by mistake but my heart sank for a few seconds.   

If you have to be at Hopkins- pick a Thursday.  Free lunch for all the parents! Sometimes it’s from a local restaurant- one time Chiaparellis, this time Panera!  Also, 15 min back, neck and arm massages.   It was heavenly 🩷. Thank you for all the well wishes!

I also wanted to share that I am meeting some really nice families in the PICU.  Wyatt’s neighbor Bella has been here for 3 months.  Everyone supports each other.  The sickest of the sick are on this floor… and the dedication of their parents, nurses, and doctors is admirable and like none other. 

Surgery tomorrow and some good news!

Amongst all this craziness we are in, we decided to begin a sourdough starter made with whole wheat flour to hopefully pass down to generations to come!  If you are familiar with beginning one, you need to discard half daily and add half water/flour daily.  It’s a process that our whole family is taking part in (whoever happens to be home). So on this graduation day, Chloe and I made pancakes with the discard!  They worked out perfectly! 

As we were enjoying the morning before getting ready for graduation, I had a conference call with Wyatt’s neurosurgeon and Benji.  Wyatt is doing well with the drained capped off.  Just mild to be expected headaches and the MRI showed his ventricles did not increase in size and no signs of hydrocephalus…. therefore the drain will remain inside his head as an “insurance policy” if he needs to be drained, but no shunt is needed 🎉🎉🎉🎉.  We are hoping it will never be needed but keeping the drain just in case.  Surgery will be tomorrow to remove the external drain.  Also, Wyatt had a EMG test on his weak left arm.  It was grueling - electrical shocks and needles up and down his arm to test the nerves and muscles.  Wyatt was tough through the entire test and endured it with grace.  It showed mild nerve damage in the C8/T1. No surgical intervention needed. It will heal in time- months and the shooting stabbing pain will continue until he resumes full movement and everything is healed.  He is taking medication to help with the nerve pain.  I’m happy it’s something that will cure itself and it’s not permanent.  Prayers answered, please keep them coming. Now it’s time to relax and enjoy this beautiful day!

Calvert Hall- You are a school with a HUGE ❤️

I have been a teacher for 26 years and one big takeaway from my experiences are that kids need to know that you care before they care about learning. The old saying- “Maslow before Blooms” is so true.  Kids need their basic needs met including love and belonging so they can maximize their learning experiences.   Building and nurturing relationships in any capacity is truly the foundation for a healthy and successful school and work place (just my two cents!)  I follow a teacher on Instagram- Mrs. Arensberg https://www.instagram.com/mrsarensberg?igsh=Zjdnem5xeG5odXow who lives and breathes this. Even though she teaches 4th grade, her ideals can be applied to anywhere.  

Today, after school on a Friday and a holiday weekend when traffic is at the worst, Wyatt’s school counselor and nurse, stopped by for a visit.  Just them visiting at the end of a long work week, was enough to put a huge smile on Wyatt’s face, but they brought so many well wishes from the Calvert Hall community- big photo of his band homeroom waving hi! 👋. A signed poster from his peers - he read every single message on that poster.  Cards from the Brothers and CHC community, a giant chocolate bar, and lots of CHC treasures from the Advancement Office and CHC community and more.  I haven’t seen Wyatt smile and be totally moved like this in a long long time.   Laying in a bed in the same room for weeks being poked and in pain is absolutely no fun.  This is exactly what he needed.  Going to a school with a big heart that truly cares about their students is so much more meaningful than anything else I can think of! Thank you CHC ❤️❤️❤️.  Your actions will be a lifetime memory for Wyatt.  

Also- his sister came to visit for the first time.  She also had him laughing!  These two have been close all their lives (only 14 months apart) and he looks up to her so much.  

Typical sister- Under questions of what to ask the doctor, Chloe writes- “Where do babies come from?” 😂 

Bingo Day!

Every Wednesday at Hopkins is hospital bingo.  Wyatt looks forward to playing anytime he is there on a Wednesday!  I look forward to Thursdays for free lunch (Panera, Little Italy, etc…) and mini back massages for the parents.  Last week, both were missed because of the state Wyatt was in.  He had no desire to play Bingo.  Today is a different story, he played and won 3 rounds!  (You play from your hospital bed, watch it on TV, and call it in if you won- then they announce you as a winner on TV- if you didn’t win any rounds- you usually get something for hospital bingo!! ).  It looks like the shunt will be placed next week- infectious disease gave their blessing- then home.  Neurology came by today to look at his weak left arm and he had is last drain removed from his back- the deep one.  I am home for a couple days to work and a couple doctor appointments myself.  It’s strange being away from the hospital.  No pics because Benji is with him 😂

Rest Day

Today was mainly resting for Wyatt.  Our next steps after the infection is completely cleared is determining if he needs a new shunt or not OR a procedure that puts a little hole in the ventricle for the fluid to drain.  I really don’t want the shunt but if it’s necessary, then we will absolutely pursue that route.  My Dad had an appointment today at Hopkins.  The rehab dropped him off, I went over to the next building to attend his appointment and then got him lunch and brought him to Wyatt. Today he got his bandage removed from his back- it looks good!  He has about 50 staples in it.  He also got a heart echo.  

I know Wyatt feels better- he is putting his hand up! No pics!!

Improvement

Today was low key, we were removed from two teams today- the pain team and the infectious disease team.   He is still getting all the antibiotics and pain medicine but Wyatt is stable in those departments so the PICU team will take over.  Today his cerebral spinal fluid (CSF) was tested compared to five days ago.  A dramatic improvement!  White blood cells from 146 to 2, red blood cells from 28,000 to 744 and the color is much more clear.  This means the infection and inflammation is healing in his brain.  

We still have a ways to go, but heading in the right direction.  Today Wyatt laughed for the first time- huge belly laugh!   I was so happy- crying for joy!  He is still dealing with headaches, shortness of breath and arm pain but hopefully those symptoms will decrease.

Some of the things I am proud of Wyatt- he is an excellent advocate for himself.  He asks his nurse about medications, keeps track of what should be given at certain times, asks for things he needs.  Yesterday we had an inexperienced nurse and he told her to to please get help before moving him.  He asks so many thoughtful medical questions.  (He is exceeding me!). Slowly but surely! 

May 15 vs May 20th- dramatic improvement!

While Wyatt is hanging out in the ICU- Chloe jumped into her school pool with her uniform! 

Just adding a few cute photos that showed up on my FB memories today!

Forward then backwards and now forward again

We go forward and backward and hopefully we are going forward again and remaining that way.  Just when I thought we were on the road to recovery, we got the news (in the middle of prom stuff going on) that Wyatt’s external drain stopped working.  It wasn’t draining for days and Wyatt seemed fine.  We all thought- Wow! This is great he will be able to come home with no shunt! Well that still may be true, but he developed bad headaches and after two 4:30am MRI’s it was determined the drain is broke!  Saturday morning, Wyatt went into the OR and had a new one placed.  It was the first operation I wasn’t there for.  It’s draining and working now.  

Another development, an incidental finding with all this imaging is that they think he reherniated!  This was also brought up last August and we discussed it with Dr. Kay’s in Florida and at that time it was determined he has a high diaphragm.  It appears he reherniated but actually hasn’t.  Wyatt’s body shape has changed dramatically since March 29th so he just had a CT scan to determine if he reherniated or not.  

The neuromuscular doctor came by to consult about the pain and weakness in Wyatt’s left arm which started immediately after the March 29th surgery.   The doctor took a safety pin and poked his face and up and down his arm.  It appears the nerves under his arm were stretched and it will take a long time to return back to normal.  He will be followed outpatient by neuromuscular and go through some more testing to find the true cause and hopefully a treatment plan.  

His body has been through so much… I hope and pray it’s smooth sailing and healing.

While Wyatt was prepping for another surgery on Saturday morning to repair the drain, his sister was prepping for the NDP Senior Prom.  

The sparkle in his eyes are making a comeback!

Thank you for the OUTPOURING of prayers and support from our Calvert Hall community, our family, friends, coworkers, our community where we live.  It’s amazing.  This by far has been one of the toughest hospital stays since he was a baby.  Being one of the central beds in the ICU made me realize the severity of our stay.  I was very worried about Wyatt, however, today when I arrived at the hospital this afternoon, he was sitting in the chair, having conversations, negotiating with the nurse, rolling his eyes at me. It truly was one of the happiest moments for me.  This is a vast difference of him being lethargic, and just blank stares out in space.  Some good things to celebrate- we moved rooms down the hall in the ICU, which means we are not as critical, I had them turn Wyatt’s bed towards the window during our move, his white blood cell count is normal, they switched his pain meds from a pump to PRN oral, they removed the wound vac and one of the back drains.  The CSF fluid coming from his brain is not as cloudy or bloody and is draining much less fluid, he ate salmon and carrots today! He still has a long way to go, his platelet count is still high, his left arm is still weak and in pain and his infection still needs to be completely cleared.  We are hoping he will no longer need his shunt.  We are going to trail off next week- my hope is no shunt.  Also, a neuromuscular doctor will be visiting him tomorrow to determine why his left arm is in pain.  His chest xray is remarkably clear compared to yesterday but the radiologist noticed a reherniation of his bowel.  The PICU doc stopped all food intake and general surgery will be visiting him on Friday.  This was noted in a CT scan in June, but after consulting with his surgeon in Florida, it was determined that he has a high diaphragm.  So they added back his food but gps will still be visiting.  One thing about Hopkins is that no stone is unturned.  They involve any specialist that is needed.  Wyatt is getting a complete tune up!  Keep those prayers coming.  Today was a good day.  

Checking all those texts you sent- THANK YOU 🩷


Switched his bed from facing the door to being able to look out the window.  

Today was Chloe’s last day of classes! Kindergarten vs last day of high school. 

Update

Today I took a break from the hospital and Benji held down the fort.  I went to work and my friends brought wine, pizza, and cupcakes over in the evening.  Seeing my work friends and hanging out with my best friends was just perfect!  Wyatt had a 4am MRI to check pressures in his head.  The MRI was unchanged which is good. An additional antibiotic was added to kill the bacteria on the hardware in his body.  He has been coughing and had a chest xray to check for pneumonia.  He was also swabbed for pneumonia- results are pending.  Chloe made these fun Shriek cake pops too! She got her nails done and we are getting prom ready!!!

Bumpy Road

It’s been a rough day. Wyatt has endured so much today.  If you would like to send him a motivational text, he will read it at some point and hopefully it will help him push through this rough patch and make his frown go upside down 🙂 Wyatt Cell-(443) 929-3093

Quiet night

Wyatt’s night was fairly quiet, his hemoglobin was low- 5.8 so a blood transfusion is needed.  He is a little lethargic so hopefully this transfusion will help as well as decreasing the pain meds.  He had a brain MRI at 1am and everything looks good! He will be in the ICU for at least a week.  

Below is the CSF from the drain

Set Back

I am not going to say we are back to normal anymore.  About a week ago, we noticed drainage coming out of Wyatt’s head in two spots and a wound on his neck not healing.  We consulted with his surgeon and the next day he admitted Wyatt to Hopkins (last Thursday) with surgery to reopen his back the next day.  To his surprise the infection was down his entire back.  Plastic surgery used muscle to close Wyatt’s wound that was not healing and neurosurgery tapped his shunt.  It was 3-team effort of ortho, neuro, and plastic surgery- that was planned in one day.  The cultures came back with heavy growth of staphylococcus aureus in the back, shunt, and bones.   Wyatt was placed on IV antibiotics- oxacillin every four hours and after speaking with the infectious disease doctor, an additional antibiotic will be added.  Since his shunt drains to his heart, so this was very concerning.  It was removed this evening and an external drain was placed.  Because of this, he will be in the ICU. The time frame is unknown but we are thinking about two weeks.  Wyatt has been trying to grow out his hair for a “longer” short hair cut but this evening it was completely shaved.  All this is so sad and a set back but he will persevere and come back even stronger.  Keep saying those prayers.  He needs them.  🙏🩷
My Mother’s Day present from Hopkins

Getting back to normal!

It’s been nice seeing Wyatt get back to doing what he enjoys- buying and selling coins and sports cards on EBay with his favorite tunes playing in the background! Music 🎶 Fun Fact- Wyatt loves classic rock and knows so much about a variety of rock bands.  He’s excited to see Green Day live in concert in July! 

He has been in good spirits and it looks like schoolwork is in his future! 📚  🖥️ 🧪 🧮

Pricing out the coins 

Updates

We have been busy!  Wyatt’s recovery has been a roller coaster of highs and lows.  We are very pleased with his back and he even grew a few inches!!! He is experiencing very little pain from his back.  Most of the pain is in his neck and left arm.  The pain levels range from 5-10.  We have been experimenting with a combination of over the counter medications to keep the pain to a minimum.  We think the Ibuprofen is irritating his digestive track causing bleeding so we are trying other combinations of pain relievers. Wyatt’s left arm and hand has very little feeling and he can’t lift his arm.  This is concerning since we are almost a month post op.  This morning Wyatt had bloodwork and a CT scan and a MRI scheduled in the near future to determine the cause.  So more to come on that.  Wyatt is working hard to recover by going to PT and OT three times a week for two hours.  He has good days and bad days but he is making progress.  

Wyatt’s Pop Pop had a stroke on Easter, so they were both at the same hospital at the same time.   Wyatt’s sister is graduating high school and we are trying to balance the magic of end of the year senior school events with taking care of Wyatt and his Pop Pop.  It’s a lot to handle, but we have an awesome support system from family and friends.   We appreciate all the check ins and notes to Wyatt.  Keeping an eye on mental health while recovering from a major surgery is important and your kindness and support definitely are a major contributing factor. Thank you ❤️

Ice Cream after a day of bloodwork and scans! 

Wyatt attending the monthly Carroll County Coin Club Meeting.  

Wyatt’s sister, Chloe- graduating soon from high school!




Pop Pop at Hopkins too!

Cute little Wyatt

Eclipse!!!