Wednesday, February 28, 2024

Another Surgery!

It’s been a rough recovery since June.  There have been many highs and lows.  One being Wyatt having a constant pain about a level 3.  Then we noticed a rod “sticking” out from his back.  Apparently a rod got unhooked from some hardware and it needs to be repaired.  The surgery team will be meeting this week to discuss the approach to spinal fusion 2.0 to happen over Spring Break. Besides, this medical setback- Wyatt is working hard in school and enjoying his hobbies and interests.  

Tuesday, September 5, 2023

Wyatt is back and ready!

Wyatt came home from the hospital on Friday and had a low key Labor Day weekend of rest to gear up for school!  His neck hurts but hopefully that will subside soon.  The day Wyatt got home, each kid could pick something- Chloe picked an extreme milkshake and Wyatt picked gambling.  Lol.  My hope is that we can put all this medical stuff behind us and that Wyatt will have a fun sophomore year! 












Thursday, August 31, 2023

Professional photos of Wyatt's halo traction- June 2023


In June while Wyatt was on halo traction for his spinal fusion surgery, the hospital child life department asked if a professional photographer could take Wyatt's pictures for PR purposes.  Wyatt isn't a fan of getting his picture taken, but he agreed.  During our current stay at the hospital, we received the pics... 85 of them and here are a few....
Wyatt is doing well and the plan is home tomorrow!!!!











The pictures below are the ones I took behind the scenes 









Wednesday, August 30, 2023

Surgery!

The last couple days have been busy. We learned that the cultures were clear and there is not an infection, so surgery was moved to this morning.  It’s was successful but not without a few detours.  The shunt placement tubing plan was to drain to the abdomen, so general surgery was called in to the OR to laparoscopically look for the best placement away from scar tissue so this issue does not happen again.  They made two small incisions on his abdomen.  Unfortunately, there was not a good spot.  So Plan B came into effect! The tubing is now going through an artery through to his heart- VA shunt.  Not the best case scenario but it’s common and very effective and we had no choice.  Wyatt is in good spirits and in minimal pain.  As soon as he woke up in recovery, he knew hospital bingo was at 2:30 on Wednesdays and wanted to make sure we were in his room to play.  He won twice! He is bummed that a portion of his head was shaved.  He was growing his hair that was previously shaved in June out by the time school started but we are back to square one again!  That’s ok though.  We will probably be in the hospital until Friday or Saturday.  If all goes well, he will start school next week sometime! 




Just a couple hours after surgery!






Monday, August 28, 2023

A good day!

Wyatt had an ultrasound of the abdomen to see if there is any remaining fluid and it’s all gone!  I also requested an orthopedic consult to check his back while we are here.  This evening he enjoyed a Starbucks coffee that just opened in the hospital lobby and sat by the Koi pond.   So far cultures look good. 
 

Sunday, August 27, 2023

There’s no laying around when I’m on duty!

Cultures are clear so far, and everything is going well. Surgery tentatively scheduled for Thursday or Friday and then home over day weekend.  Keep your fingers crossed and prayers coming 🙏 ❤️

No more pics Mom! 



Saturday, August 26, 2023

I spoke too soon… he’s not back yet, but will be soon!

Wyatt has been having abdominal pain all summer long since surgery.  We attributed it to his incision on his abdomen but on Saturday, we learned that was not the case.  The good news is that we are addressing the issue and he feels better already!  On Saturday, Wyatt was in extreme, extreme pain.  It broke my heart.  I thought to myself, that’s enough of just giving pain meds- we need to find the underlying issue!! Off to the pediatric ER at Hopkins.  They were awesome- took him right away and did every test - x ray, ultrasound, MRI.  They discovered a pseudo cyst- cerebrospinal fluid from his shunt pooling in his abdomen. It has been building up since mid June.  His body is not absorbing it.  He was admitted about 1:00 am and had emergency surgery at 9:45am on Saturday.  We are fortunate to have a hospital close by with a full neurosurgical team 24/7.  The surgeon pulled 200 ml of CSF from his abdomen and placed an external drain until all the CSF cultures from his brain and abdomen come back in five days.  After five days, he will have a  more extensive surgery, placing the tubing back inside his body and locating a spot that will absorb the fluid.  For now we just sit and wait in the hospital for about a week before the next surgery.  We are told about two weeks in the hospital.  This all took us by surprise!   The timing overlaps with the start of his sophomore year but he will persevere.   We are happy to finally figure out what’s going on.  

Wyatt is feeling better already in just a few hours after surgery.  Surgery on a weekend is vastly different than surgery on a weekday.  The waiting room and recovery room was completely empty.  Hopefully after this, Wyatt will be even stronger than before.  Why not end the school year and start the school year at John’s Hopkins????  Even on the same floor and same room.  


After surgery 

The drain- the clear liquid is CSF- cerebral spinal fluid

Everything is EMPTY!!!



Wednesday, August 23, 2023

He’s BACK🎉🎉🎉🎉🎉

Wyatt has made immense progress and is ready for school!  He is working hard doing five therapies a week- physical and occupational.  He is determined, has a strong work ethic and is focused on getting stronger. Even though it’s a year-long recovery, we are so proud of the strides he has made since June and his positive attitude.  We recently came back from a beach trip and he was walking ahead of us on the boardwalk! His pain is managed through medication as needed and he is working on advocating for himself, taking breaks as needed.  We are looking forward to him just being a teen, enjoying sophomore year.  There are no foreseeable surgeries, which is a first in many many years.  It’s about time he enjoys life and worries less!! 
















Tuesday, August 1, 2023

Progressing!

Wyatt had his  six week follow up surgery appointment and X-ray.  Things are looking good.  He is complaining less about pain and stomach aches.  He still gets a little dizzy and uses the wheel chair if he is walking long distances but he is walking more and acting more like himself! He walked up the steps to the Calvert Hall stadium to the top with his friends yesterday which was awesome!  Today he is at Knobles Amusement Park playing carnival games- his fav!!! Now he has to buckle down and do his summer homework- reading two books before school begins at the end of the month.  

Knobles Anusement Park



Top of the Stadium!

Baking six cakes for the 4-H Cake Auction



Follow Ip appointment 6 weeks after surgery- before and after 




Physical Therapy three times a week





Friday, July 21, 2023

Updates

Wyatt is getting stronger, walking longer distances independently and less and less pain meds.  Our follow up appointment is this Monday so we will find out more information.  He is going to OT and PT a total of 5 days a week.  This week in PT, we added using his book bag to gear up for the school year.  It’s light now but overtime, we will add more books to simulate reality and work on balance.  

Book bag practice 






More carnivals and more prizes 😂


Wyatt’s candy machine is doing well at the new location.  He has another one just like this and is seeking a location.