Home away from home

Baltimore is slowly becoming my family’s home away from home. We are making trips down to N Broadway every-other week, visiting the Johns Hopkins Hospital or the Kennedy Krieger institute.

This past Friday, we woke up early to prep Greyson for his Port-Wine Stain (PWS) laser removal procedure. I was extremely nervous about how he would handle the numbing cream and Valium that were prescribed to him. After reading the prep directions several times, I knew what we had to do:

  • Clean the PWS with rubbing alcohol- this immediately set G off because of the smell.
  • Add a liberal amount of the prescription lidocaine to the entire area- this was the L cheek, temple, ear and behind the ear, ending at his neckline.
  • Wait an hour and add a little more lidocaine.
  • Give him a dose of Valium to calm him.

Since he had no food restrictions, we packed him into the car at 8:30, put on a DVD and gave him juice and cereal. Around 9:00 we gave him the dose of Valium. Imagine, driving down I-83 S among heavy construction work through York county, all while your husband is laying over the passenger seat to drug your child…..it would’ve made for an interesting CYS call. I would have stopped to give him the meds and to get coffee, but we were already running 20 mins behind. No coffee before 9 am = grumpy me.

Around 9:35, Greyson was flying high as a kite, laughing at Dopey and the other seven dwarfs on the DVD screen. We pulled in to Johns Hopkins- who just had a TB scare the day before, around 9:50 and basically ran to the appointment from the parking garage. No sooner did I check-in at the kiosk, they were calling us to go back to the procedure room.

Before shot of G’s face- roughly 5 months old

Once we stepped into the procedure room, I was surprised as to how many people were present. We had Dr. Cohen (the dermatologist and surgeon), a head resident doctor, 3 students, a nurse and the child life staff. The child life staff began blowing bubbles and playing with G, all to distract him from the fact that the nurse was placing him in a small restraint device.

Restraint device G was placed in for the procedure

Once Greyson was in place and ready, the resident doctor had me sign a consent to treat form and everyone in the room was given glasses to protect their eyes from the laser. Dr. Cohen was fantastic. He knew I was anxious due to the fact that G has a difficult time being restrained, especially in strange places, so he reassured me that Greyson wouldn’t feel any pain and it was more of an inconvenience for children his age. Dr. Cohen moved so quickly and precisely, it shocked me when he placed the laser down and said he was finished, just a few minutes after starting. This also relieved me because I knew G would stop crying once he was out of the restraints and I could finally get some coffee.

The entire procedure took about 5 minutes from start to finish. Dr. Cohen said that he was fairly positive that he was able to get majority of the PWS taken care of, including some spots that I never noticed Greyson had. G did so well, I was extremely pleased with the staff and how great he did. Because he was still drugged up on Valium, I drove him home and stopped to get him a happy meal on the way. This pleased him even more than Snow White and the Seven Dwarfs that was still playing on the DVD player on the way home. We will return in September for a follow-up session and hopefully will be finished with laser procedures for awhile.

We will return on Friday the 13th (doomed) to meet with Dr. Comi to discuss the possible seizure activity we are seeing in Greyson now. I’m hopeful that we will get more answers as to what may be going on with the strange tic behavior he has started and results from his lab work that we had completed in May.

Soon enough, I’ll be able to drive to Baltimore in my sleep.

Day 1 post-op

3 thoughts on “Home away from home

Add yours

  1. Thank you my dear! We have definitely put ourselves on the back burner recently and we are getting really burnt out. I hope you are well! I can’t believe how big your babies are getting!!!

    Liked by 1 person

  2. So hope he gets better super soon! I also pray for strength as you and your husband push through and I hope you are practicing as much self care as you possibly can! Here for you momma!!


  3. Aww poor baby. Little G sounds like a little fighter. I hope you guys get some clarity and insight in September. Prayers for little G!


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