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Posted 2015-08-09T16:14:11Z

August 9th, 2015 - Dr. Updates from Multiple Teams

Last night Misty and Ryan stayed in the ICU with Perry and brought Michael in around 6 AM for the next shift. Throughout the night Perry was very spastic with tongue, mouth, eye and limb twitching. Misty had asked that they do something as she feared all of his nutrition (now at goal of 60 mL/hour) is being wasted in his spastic movement. Around 7:45 they did administered a bolus of Propofol and gave him a dose of Ativan  which tremendously reduced the spastic activity seen throughout the night and was really reduced to some mouth movement and minor shoulder shrugging.

Infection: Doctor came in and said his white blood cell count is trending down from 23K to 16.5K which is a good sign that his body is not needing to produce more white blood cells to combat the infection. They are continuing anti-fungal treatment and keeping his anti-rejection medication at the same lower dose as yesterday to continue to help fight the infection. Blood cultures will take 5 days (and maybe more depending on what comes up from that) to assess the infection further.

Neurology: The neurologist came in and said he is still having seizures, and they are going to start him on Vimpat to try to control his seizures. They want to get his seizures under control before weaning him off of the Propofol (sedative) and they really can't assess his brain function until he is weaned off. They will also not be taking him off the EEG until seizures subside, which is hard for Misty as she can not run her fingers through his hair in a calming manner. While shining a light into his eyes, his pupils were reacting and this time we saw a head movement away which is a bit more reaction than we had seen previously.

Pulmonology/Transplant: Dr. Mehta, who has been part of Perry and Misty's entire transplant journey, came to speak to Misty, Michael and Ryan after the infection and neurology doctors. He said that the heart and lungs are still doing well, his liver is recovering and kidneys are still on dialysis and that will take time to recover. He was assuring us that they are doing everything that is humanly possible and that time is what he needs right now. He also assured Misty that he will be forthright with all information as they have a bond, and gave her a hug/kiss telling her to hang in there and to be sure we are taking care of ourselves.

Surgical Team: Chest CT scans showed that the new subclavian lines that were added yesterday did not end up in the correct place which is why femoral lines were needed. Nothing is being administered through these lines, but they are keeping them in for today as a precaution as they would like to wait until everyone can be bedside when they remove the lines in case of emergency. They have a very experienced anesthesiologist who has run 1000's of lines like this, but these things sometimes happen and Misty pointed out that Perry's anatomy has been different since birth which could be a factor. It is good that they are veins and not arteries as they should close up quickly once removed and any bleeding should come through the chest tubes.

The key thing that everyone has mentioned is that he needs time. Time for his body to heal, his organs/brain to recover, time for the anti-fungal medication attack the infection, etc. He was visited and prayed for by a priest today, which is extra necessary as today is his mother Doreen's birthday and she has been the one taking the most watch with her picture always in his corner! Misty's sister, Denise, and some of her family are currently on their way today and she is bringing some of the perfume Doreen used to wear so Misty can stimulate his sense of smell with that amazing memory. Thank you all for your continued concern and support and we will do our best to keep you abreast of everything that is going on.

 

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Comments (4)

  • Dianne Cook
    Dianne Cook

    These posts are just amazing. They are so thorough and written in a way that I don't have to have a medical degree to understand them. Misty, Michael and Ryan...you all must be in a place somewhere beyond exhaustion...there can't even be a word for where you guys are physically and emotionally. I admire all of you so much. There is no doubt that Perry knows how much he is loved and that is the reason he is fighting so incredibly hard to stay with you all. Prayers continue to go up for Perry and and the rest of you. God bless all of you. Hugs and positive thoughts to the entire DiGiovanni family.

    4 years ago · Reply
  • Diane Kissinger
    Diane Kissinger

    I know that Perry feels everyone's presence and love and that's why he is fighting so hard. Once again, thank you for the updates it helps me feel connected to a very small degree to what all of you are experiencing. Positive thoughts and prayers are sent multiple times a day for all involved with Perry's journey.

    4 years ago · Reply
  • Dennis G. Barker
    Dennis G. Barker

    What a fighter. Could it be the movements, are him attempting the assigned exercises he was given at post-op? All at church are amazed at the total Faith, countenance plus extreme Peace displayed in the Majestic "Godfather" pose, one quickly overlooks that this a hospital photograph. Ann and I are so proud of the "DiGiovanni Team", it is a pleasure to know, love and be related to each of you. Cleveland Clinic and the staff are truly doing Gods work!

    4 years ago · Reply
  • Roxanne Murphy
    Roxanne Murphy

    I think and pray a lot for Perry to be healed. He is one of my favorite people in the world and I think everyone who knows him feels the same way. Misty, you are a rock. Please make sure you take care of yourself too.--Roxanne We love you all and we have you guys in our thoughts and prayers. With Love The Murphy Family.

    4 years ago · Reply