Sunday, June 30, 2024

Pumped Up - Week of June 24th

"Titration is a way to limit potential side effects by taking time to see how your body will react to a drug. In titration, the medication is started at a low dose. Every couple of weeks, the dose is raised (“up-titrated”) until the maximum effective dose (“target dose”) has been achieved or side effects occur." ~Definition of titration in the medical field

We were not surprised to learn that we would be staying at the Children's Hospital instead of transferring over to Mary Free Bed.  The docs asked Cam to lay back as flat as he could to help with extreme headaches and vomiting.  By Tuesday, he had improved and was able to enjoy a visit with the pet therapy team.  A MRI was scheduled and Ms. Ann stayed with Cameron so his parents could enjoy a dinner away from the hospital grounds.
Another MRI was scheduled for Wednesday morning.  We kept our sense of humor during the extended stay.  Chris left a message on Cam's door: "Back in an hour or two. Do not give away from room please! ~Cam"  Ms. Ann provided some awesome wall art created by her kids and grandkids.  Cam's room was in the tower of Helen DeVos shown in the picture.

On Thursday, the neuro and peds docs gave Cameron the "all clear" for discharge directly to Mary Free Bed.  Although the extension to our stay wasn't welcome, the nursing staff was exceptional.  

One of Cam's favorites was Monique.  When she introduced herself to Cam, he was having trouble remembering her name.  She told him "My friends call me 'Mo' so you can too!" Finally, by the third time she checked on him, he said "Hi Mo!" and she replied "See Cam! Now we're friends!" She also shared one of our favorite "bad" jokes of the week... "What do you call cheese that isn't yours...Nacho Cheese!"  Linda, who's been an RN for more than 35 years was with us three times over the course of our stay, sharing her positive outlook and calming demeanor everytime.  Haleigh and Meghan endured a grueling night shift with us of extremes, which they took in stride.  Rachel was a nurse tech who taught us all the proper ways to shift, move and position Cam.  

We said goodbye to the children's hospital and drove the ten-minute stretch to Mary Free Bed Rehabilitation Hospital.  Cam was scheduled for a minimum 1-week stay.  The setting was peaceful and far less noisy than the main hospital.  Cameron's room overlooked the circle drive in the front of the building and one wall of his room had a "wallpaper" picture of the beach with surrounding trees.  His scheduled was posted on the tv for Friday: 4 therapies per day which equated to two sessions of PT and OT each.  

Chris stayed with his son Thursday night but we convinced him that Friday evening, he could stay by himself.  His famous pout face that he learned as a toddler reappeared, but he persevered.  The nurses were checking every couple of hours and there was a call button attached to him.

Cam's good friend, April, popped in to visit him on Friday.  They began the titration process of the baclofen medicine on Thursday afternoon by increasing the dosage that the pump releases to the catheter.  The titration process is tricky since the upward limit is high, but other areas are affected due to the increased looseness of the muscles.  Therapies were also on his calendar for Saturday and Sunday.  For the first time ever, we caught Cam dozing off in the late afternoons.  

Ms. Tacy, a sweet friend who works at Mary Free Bed, came in on her vacation to visit Cameron and brought him some yummy peanut butter cups as well as 4th of July glowsticks and a light up cup!  

A big bonus was eating our dinner as a family outside on the weekend evenings.  The greenspace on the third floor was relaxing and refreshing!

Camology Quotes:

Prior to Cam's second MRI, the sedation anesthesiologist asked Cam if he still had headaches to which his response was: "They have dissipated." 

Favorite "bad" jokes from our children's hospital stay... 

From Doc: How do you know when a joke is a dad joke? When it becomes apparent!

From Chris: What kind of jeans do I have? Mom and Dad's

From Cam: How does an eye get its medicine? An IV!

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