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Posted 2015-09-16T05:17:00Z

September 15, 2015 - A Good Day

Sarah RN's morning call indicated that Perry slept rather soundly most of the night awakening only for brief intervals & to take his anti-rejection sublingual (under the tongue) medication. His morning labs were somewhat stable. The Infectious Disease Dr saw him today & told me about a collection of fluid on his L lung seen on the CT scan done a few days ago. She is requesting Dr. McCurry (Cardiothoracic Surgeon) to review it in more depth. His heart rate has been in the 100-110s for several days, he's felt feverish as well as having frequent bouts of hot spells wanting to be without clothes or covers. However, on a good note, his white blood cell count has not indicated a significant rise. Another Metabolic Cart was completed early this morning to determine his nutritional needs. His formula feeding was increased to 40 mL/hr this AM to see if he was able to tolerate that volume without nausea as his abdomen remains distended. He continued to burp frequently with lots of acid reflux & did have a few loose stools today. No nausea developed so feeding volume was increased to 50 mL/hr by late evening. Neither the NG tube nor the FMS have been reinserted. He was able to tolerate being on CPAP for most of the day today. Was up in the chair from ~2p-530p but wanted desparately to return to bed by 330p due to his Rheumatoid Arthritis discomforts & lack of any padding on his body frame. He was very dissatisfied waiting for the lift team for 1 1/2 hrs to return him to bed despite comfort measures of massages, medicine, warm packs, & repositioning. Dean PT worked with him this morning with the hopes that he might have been able to assist him to stand for a few seconds, but Perry tired easily & does not yet have the leg strength to stand. He was rather alert for most of today & continued to mouth lots of sentences. Unfortunately as mentioned before, many consonants are difficult to identify with lip reading & especially when he over emphasizes them as a result of his increased frustration. I tried a lot of different things today to see what he could do to communicate. He's not able to write letters due to lack of hand strength, inability to grip with adaptive foam devices, & hand/arm tremors which although significantly less than previous are a factor. He has trouble pointing to letters on the enlarged flat surface keyboard placemats that I had created due to the same. He is able to spell & recognizes letters of the alphabet, but that takes too long & he loses patience quickly which becomes a source of more frustration. I requested for the Speech Therapist be notified for an evaluation so that adaptive augmentative resources could be recommended. I will purchase them as it is inappropriate to have to wait until he is released from the acute care setting, then go to the step down unit, & then placed in a rehabilitation setting before such are provided. It is uncertain how long it will take for his body to be physically capable of coming off the vent completely in order to be discharged from the CVICU. To have to wait to be given such tools & resources is psychologically & physically counter-productive & destructive to his progress. Frequent repetitive questions that are perplexing his mind arise partly because of the ICU delirium & processing delays. "When am I going to be able to be off the vent?" "When can I talk?" "When can I eat?" & "Why can't I eat?" Unfortunately, it's going to take a lot more time before these questions can be answered 😕. We are hoping to arrange a visit with his father & Char in the near future if at all possible as they too will be undergoing surgeries, & it will be a very long time that they will be able to be together due to each of their recovery processes. Wishing everyone lots of sunshine & the ability to take in as much of the remaining days of Summer as possible!!!! 😎🌻🌿🌳🐝🐜🐢☀️🍓🍒🍊🍑🍉🌽🍅⛳️⚾️🏈🚣🏼🏄🏽🎣🏊🏼🎢🚲⛵️🚜

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Comments (6)

  • Carol Garard
    Carol Garard

    Continuing to pray for all. Love Carol & Keith

    4 years ago · Reply
  • Cathy McIsaac Branigan
    Cathy McIsaac Branigan

    Love to all, Tim, Cathy and Caleigh

    4 years ago · Reply
  • Julia Lindholm
    Julia Lindholm

    Hi Misty, Have you tried laminating a card with a grid of pictures that he can point to in order to communicate? Also, there is a company out there called Go Talk that has a variety of devices as well as an iPad app that can be personalized with pictures and words that might help. If you are concerned about an iPad being dropped, there is a company that makes a product called iBallz. They are special foam balls held together by a bungee string that go around the outside of a tablet. If the tablet drops, it does not break. I work for a school district, and we bought some for our special needs students. I got to test the product out. It was a lot of fun throwing iPads like a Frisbee on tile floors with absolutely no damage to the device. I continue to pray for you and your family.

    4 years ago · Reply
  • Joni DeBusk
    Joni DeBusk

    I feel not only Perry’s frustrations but yours on the lack of devices for communicating! In today’s modern technology you would think there would be “something” out there that could be used. I hope Speech Therapy can step up and advise you on what can be purchased. I bet if Perry had the strength, he would throw something across the room in his frustration to make people understand what he was trying to say. I keep thinking about the movie “The Theory Of Everything” and the board they devised for Stephen Hawkings…..had to do with several different colors and within the color group, a group of letters. I believe they would determine which color group (by blinking) then narrow it down to which letter which that color group (again by blinking). However, I would take a long time just to spell one word. I used a dry erase board for my aunt but she did not have tremors so she could print letters well enough I could read them. I pray you and the “experts” figure this out soon since I know this will relieve lots of stress from both your lives – just to be able to communicate. E-Hugs (BTW, tell Perry once he gets well and visits his in-laws in Middleburg, I am coming over for a real hug) and tons of prayers. Love, Joni & Ken

    4 years ago · Reply
  • Brenda Witt
    Brenda Witt

    Will continue to keep praying until Perry wins this battle. Love to all of you. Brenda

    4 years ago · Reply
  • Greg McCullough
    Greg McCullough

    A suggestion, Google Glasses? Controlled by eye movement. If they are a viable option, I'll work out a donation. Greg

    4 years ago · Reply