Sunday, May 3, 2015

Weekend update from Johns Hopkins

Well Champ, it's been a rough couple of days but you have persevered with your characteristic determination and good humor. After multiple tries which involved ripping the glued-on dressing away from your scalp (OUCH!!!) your new "companion" The Wound VAC,  appears to have found it's equilibrium and is working smoothly now. Another challenge that had to be overcome was establishing a new central line to deliver multiple high-powered antibiotics intravenously for the next 6 weeks.   After careful deliberation, the PICC team here decided your peripheral veins are no longer suitable for long term catheters.  So yesterday afternoon you were taken to Interventional Radiology and a Hickman Catheter was surgically tunneled under your chest skin and into your central venous system which will deliver the antibiotics just above your heart.  The infectious disease doctors believe they have found two bacteria which could be the cause of your recurrent postoperative complications.  Hopefully this discovery and the aggressive plan to clear your body of this insidious infection will allow your Noggin to truly heal.  Already it seems your voice and energy are picking back up. More blood tests need to take place to determine the best antibiotic dosage which will wipe out the infection without damaging your kidneys.  Once the dosage is established and the Wound Vacc dressing has been changed one more time (Grrrrr), we will be headed home.  Hopefully Monday or Tuesday!

Forrest sporting his new Hickman catheter and getting acquainted with his Wound Vac device. Thankfully the home unit is reportedly much more portable! 

The long stretches of hospital time have been relieved by phone calls and Face Time visits from friends and therapists, walks around the unit, visits to the "Teen Room" and Toliver snuggles.  

Virtual speech therapy with Laurie had them both in "stitches"!

Forrest and Toliver delivering cookies to the nurses station. 

Toliver Snuggles...The best part of the day! 

The nurses and doctors all know you are planning to sing "This is the Moment" at the APTB Spring Recital on May 9 and they are collectively determined to get you there!!!  We are all looking forward to seeing lots of your friends at the Recital!!

Please come celebrate Spring next Saturday with Forrest and A Place To Be!

With gratitude for the wonderful Johns Hopkins doctors and nurses,

Mum

6 comments:

  1. Looking forward to meeting Herbert! Your looking great!

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  2. We love you all (even Herbert if he helps get you better!) and miss you! They need you at the recital!
    The Elgins

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  3. Can't wait to see you soon bro! Looking forward to seeing you and the others singing this Saturday!

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  4. Ditto to the Weeden's comment, Forrest. You look awesome! I am so excited to give you the BIGGEST hug next Saturday. Only 6 more days until we get to hear that beautiful voice A Place To Be helped you get back!

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  5. Despite the challenges, your smile is very "Forrest" and looks just great. I'm sure learning a lot about the amazing medical advancements and instruments that are out there to help you...but lets hope for no more testing on YOU. This is all going to work and heal you up super quick. Hoping you are homeward bound soon. Love the faithful Toliver picture. What a pair!

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  6. It was wonderful meeting Forrest and Tolliver at the Be Kind to Animals centennial! Sending all of you lots of good energy and hope to see you again soon!

    Mark at American Humane Association.

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