I was up eight times that night with sick kids. Ironically, I felt rested when I woke up because I wasn't actually awake all night, just woken up several times. My oldest sister was still at my house, so once I showered I left and headed to the hospital. I knew I would hit a bit of big city traffic, but I didn't care. I wanted to be in transit. I needed to see Patrick. Halfway there I got a call from my older sister who yelled once I answered, 'he's awake! He's sitting up, awake and writing notes!' I was so happy. It made me want to get there even faster. We had spoken with the doctors the night before and they told us that they would wean him off of the ventilator around 9:00 a.m., so I wasn't expecting him to be awake for several hours after I arrived.
I parked in the parking garage and my feet couldn't carry me to the ICU fast enough. I turned the corner and saw him through the glass doors. He looked and me and I smiled. He was sitting up, awake, breathing on his own. Like the day before, I wasn't light headed. That was until I saw him struggling to get some fluid out of his lungs. It's difficult for him to cough and he looks in pain as he tries to get some of the gunk out. It looks like he isn't able to breath well. I needed to sit down. No, I needed to lay down. I reclined the chair and took deep breaths until I felt better. My sister, the nurse, told me the same thing happened to her. She has seen the worst, but because he's family, it got to her. Only the second time in her career. Once over that hump, I starting checking out his scars. He had been up since 5:00 a.m. and wrote me a note telling me he didn't know when I was coming back. That made me sad. He was very confused about the date and day of week and naturally had no recollection of the night before.
His tongue looked amazing! The flap is pink in color and is checked frequently to be sure there is blood flow via a miniature ultrasound machine. His scar is healing nicely and although it looks rather Frankenstein-esque, it will heal over the next year and strangers won't know it exists. Sadly the tracheostomy has a steady slow leak of blood which is normal, but annoying.
He was able to be weaned off of all three I.V.'s throughout the day, only the ports will remain until he leaves the hospital. The large ventilator was replaced by a smaller version and a large blue tube pumps warm air around the trachea site. The heart LEDs were removed and his catheter taken out. The drains in the surgical sites and the feeding tube remain. He is also still required to wear a blood pressure cuff on his arm and pressure cuffs on his legs. The cuffs on his legs are there to help blood flow and reduce the risk of getting blood clots while lying in bed. He uses a suction tube every few minutes to get the saliva, and blood out of his mouth so he doesn't choke.
Patrick was determined to be up and around on post-operation day one. He moved to and from the recliner in the room a few times and during my last visit of the day, he insisted on walking. He took two laps around the ICU, walking faster than his nurse wanted him to. I'm thankful for his drive to recover, I just don't want him to push it too hard. When he moves around the room to and from the chair, he unhooks and hooks all the tubes and lines himself. He is doing so well, that he will be moved to a regular floor room on Day 2!
Patrick gets frustrated with not being able to talk. He can write things on a clip board, use his right hand to finger spell and mouths words. He complained of being hungry all morning, so they increased the amount of the liquid meal he receives. It seemed to help. He is also jittery from the steroids they are giving him, which help the swelling go down, but it's hard for him to sit still and he can't focus on a magazine, t.v. show or Ipad game yet.
All things considering, he is doing amazingly well. Dr. V. told him that he would have a fully recovery in the area of speech and eating.