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Posted 2015-09-21T06:09:00Z

September 20, 2015 - Sunday Smiles Are Good for the Soul

Perry had an uneventful night. As a result of yesterday's incident, Perry had requested his night shift RT to leave a note on his vent for the day shift RT not to start him on trach collar breathing until I arrived at 9a. Perry was getting a bit anxious when I arrived @ 905a as the RT was at his bedside planning to start & it took me awhile to calm him down. Perry also has certain therapists with which he is not comfortable, so he was anxious for that reason too. He was mouthing sentences a mile a minute & in need of breaking up his accumulated nighttime post-nasal drip which is hard for him to clear with the trach in place & not able to mechanically clear his throat with the cuffed trach, so he kept me extremely busy with lip reading & oral suctioning. By 10a, he too was exhausted, so it was good that we were both able to close our eyes for a few minutes holding hands. I had missed getting to see Dr. Akindipe (lung transplant pulmonologist) this week during his rounds but I got to see him this morning. Since he had not been on hospital service for a while, he expressed to me how happy & so pleased he was that Perry was still alive & progressing as the last time that he had taken care of Perry all of the doctors were not sure if he was going to live or die. He does not want Perry to be doing trach collar breathing now as he feels he needs to gain more strength & nourishment in order to do so, & he wants the diaphragm specialists to re-evaluate him. Due to his kidney function & levels, he feels intermittent dialysis will be necessary for still quite a while. Unfortunately every week a different Dr is on hospital service & many of the Drs do things differently & the plan gets changed according to who is on each week. I wholeheartedly agree with Dr. Akindipe & trust him as he's known Perry for the longest time with the exception of Dr. Budev. Perry has not had a bronchoscopy since his transplant on 7/27. Initially, his first bronchoscopy was to have been done by Dr. Akindipe on 8/5; however, we all know why it did not get done on that day or since that day. A bronchoscopy is done to check the lung tissues for signs of possible organ rejection of the lungs, to help remove additional fluid collections deeper within & throughout the lungs, & also helps to rid any mucous plugs. It is a "routine" sterile procedure done post-lung transplant under sedation & repeated rather frequently post-transplant. Under "normal" circumstances, Perry would have had several by now but.... "normal" has not ever been a part of his course. Hopefully he can be added to the schedule tomorrow. Kim & I took trip to Bed Bath & Beyond & got Perry an Extreme Wondergel seat cushion, a Verilux HappyLight, & a step stool to facilitate his recovery. The HappyLight is a Natural Spectrum illumination light that will help with seasonal change, the "winter blues," malaise & fatigue & gently cues the body to recalibrate & stabilize, naturally reducing fatigue & lethargy while improving focus & concentration. It will benefit us both in the many days & many months to come that we be part of this journey. It was good to have Michael & Kim here for the both of us. We saw a few smiles, & Perry got to speak briefly this afternoon with the diligence of Matt RT & hard work on behalf of Perry!!! Also later this evening Perry had been asked if the Bears won today, & he answered "yes" & was insistent that they had won despite me telling him that they hadn't - so he must of had either a good dream or perhaps the year was 1985 today too (sometimes the year has been "1985" & not 2015 when he is being asked questions to determine his level of orientation). I haven't moved to the other apartment yet as the child of the family in that apartment is having complications so their move to the Ronald McDonald House has had to be postponed. Lots & lots of families are undergoing significant life & death battles here in Cleveland & all around us all!!!! Prayers are so important to us all!!! We will continue ours on behalf of all of you too!!!!

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Comments (1)

  • Joni DeBusk
    Joni DeBusk

    So thankful that you and Kim got to go shopping and the items sound interesting. I believe I'll look into that seat cushion. I carry a back pillow with me everywhere and have since 1972 but thinking a seat cushion would be a good idea too. I am always amazed at the inventions - I love the sleep machine (white background noise) used by shift workers and this Happy Light really sounds awesome. Praying for the bronchoscopy to happen soon and good results. I saw your parents yesterday and they look great. They are amazing people. E-Hugs and prayers are constantly flowing. Love, Joni & Ken

    4 years ago · Reply