July 18, 2017 10:30 pm (Mountain Time)
Josh was very confused this morning. As we were trying to clean his arms and hands off with alcohol wipes, he insisted on washing the goop off himself. He grabbed the alcohol pad and stuffed it in his mouth. He chewed it up, but we got it out before he swallowed it. Even though he has a countdown board and we've talked about his discharge date for five days now, he didn't know we were leaving the hospital. We've told him a dozen times or more that we were going to Colorado, but he didn't remember where we were going. He was shown a picture of an airplane, and he said he's never been in one. When asked if he is right-handed or left-handed, he said "left." Sometimes when the extent of the battle hits, it feels overwhelming. Bob reminded us that there is always that "groundbreaking new book" Baby Steps by Leo M. Marvin, M.D, Ph.D.
After a hectic morning of preparation and goodbyes (the hospital staff at OHSU was AWESOME!), Josh and Mary were transported by ambulance to a private airport next to PDX and then by air ambulance to Denver. It was difficult for Josh. Because he couldn't understand what was happening, during the flight he kept trying to pull off his seat belt. He was given Fentanyl to relax him; it worked for only about 20 minutes. Mary was holding Josh's left hand when Josh said he was scared to go somewhere new. The on-board nurse (David, who was great) held Josh's right hand, which comforted him. It is hard to feel more appreciative than a parent does when a stranger shows compassion to his/her child.
Josh and Mary arrived by ambulance at Craig Hospital at around 2:00 pm. (Paul was there to greet.) We are Denverites now!! It was a flurry of activity after his arrival. A slew of doctors, technicians, therapists, and other medical personnel worked to get Josh situated in his new home. We had some concerns with some of what happened (drawing blood was an absolute debacle because the most inept phlebotomist in the world poked Josh seven times to draw blood!), but after all the good we've heard about this place, we are trying to remain hopeful. (Even so, Mary requested that phlebotomist never work with Josh again. Maria was assigned to take his place, and she was fabulous.)
Josh had a fever (103.4) when we arrived in Denver. His PEG tube is inflamed, hot, and hard. Mary asked to see the physician. Dr. Makley came. He is Josh's assigned physician. He immediately ordered CT scans. There is a surface-level infection in his skin around the tube. He's been hurting there for three days, so we are hopeful that he will feel better after he starts a series of antibiotics.
Josh has a full day planned for tomorrow, starting with x-rays and ultrasounds at 8:00. His schedule ends at 3:00. We are looking forward to some progress.
Our apartment is a one-bedroom apartment in a retirement home about a block from Craig. Apparently the hospital rents from the retirement home when the need for additional rooms arises. The home itself is relatively nice, but our room leaves quite a bit to be desired. The carpet is old, the room has a distinct (some would say un-good) smell to it, and the furniture is sparse. The biggest issue is the Internet connection, which is so slow that it is virtually unusable. Paul has already been here for 24 hours so we are already mostly settled in. We have a nice view of the mountains out of both our apartment windows and also Josh's hospital window.
Josh was very confused this morning. As we were trying to clean his arms and hands off with alcohol wipes, he insisted on washing the goop off himself. He grabbed the alcohol pad and stuffed it in his mouth. He chewed it up, but we got it out before he swallowed it. Even though he has a countdown board and we've talked about his discharge date for five days now, he didn't know we were leaving the hospital. We've told him a dozen times or more that we were going to Colorado, but he didn't remember where we were going. He was shown a picture of an airplane, and he said he's never been in one. When asked if he is right-handed or left-handed, he said "left." Sometimes when the extent of the battle hits, it feels overwhelming. Bob reminded us that there is always that "groundbreaking new book" Baby Steps by Leo M. Marvin, M.D, Ph.D.
After a hectic morning of preparation and goodbyes (the hospital staff at OHSU was AWESOME!), Josh and Mary were transported by ambulance to a private airport next to PDX and then by air ambulance to Denver. It was difficult for Josh. Because he couldn't understand what was happening, during the flight he kept trying to pull off his seat belt. He was given Fentanyl to relax him; it worked for only about 20 minutes. Mary was holding Josh's left hand when Josh said he was scared to go somewhere new. The on-board nurse (David, who was great) held Josh's right hand, which comforted him. It is hard to feel more appreciative than a parent does when a stranger shows compassion to his/her child.
Josh and Mary arrived by ambulance at Craig Hospital at around 2:00 pm. (Paul was there to greet.) We are Denverites now!! It was a flurry of activity after his arrival. A slew of doctors, technicians, therapists, and other medical personnel worked to get Josh situated in his new home. We had some concerns with some of what happened (drawing blood was an absolute debacle because the most inept phlebotomist in the world poked Josh seven times to draw blood!), but after all the good we've heard about this place, we are trying to remain hopeful. (Even so, Mary requested that phlebotomist never work with Josh again. Maria was assigned to take his place, and she was fabulous.)
Josh had a fever (103.4) when we arrived in Denver. His PEG tube is inflamed, hot, and hard. Mary asked to see the physician. Dr. Makley came. He is Josh's assigned physician. He immediately ordered CT scans. There is a surface-level infection in his skin around the tube. He's been hurting there for three days, so we are hopeful that he will feel better after he starts a series of antibiotics.
Josh has a full day planned for tomorrow, starting with x-rays and ultrasounds at 8:00. His schedule ends at 3:00. We are looking forward to some progress.
Our apartment is a one-bedroom apartment in a retirement home about a block from Craig. Apparently the hospital rents from the retirement home when the need for additional rooms arises. The home itself is relatively nice, but our room leaves quite a bit to be desired. The carpet is old, the room has a distinct (some would say un-good) smell to it, and the furniture is sparse. The biggest issue is the Internet connection, which is so slow that it is virtually unusable. Paul has already been here for 24 hours so we are already mostly settled in. We have a nice view of the mountains out of both our apartment windows and also Josh's hospital window.
Oh Joshie. I'm so sorry, Mary and Paul - this is such a rollercoaster and we're here with you in spirit.
ReplyDeleteHappy Birthday Josh! Never give up! Keep making progress! You're in our thoughts and prayers.
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