outside

I missed seeing James wearing the robotic exoskeleton suit today.  I searched for him in the gym and the other PTs told me he was downstairs.  As I exited the gym, I bumped right into the therapists wheeling James back into his room. I asked him how it felt and he said, "Weird" and rolled his eyes.

He practically jumped into bed and I took off his shoes and socks.  The nurses came and checked his body for the status of his sores. Unfortunately, the tape the PTs used to correct James's posture tore his skin and caused wounds.  I discovered his condition yesterday while taking his shirt off and a corner of the tape became loose with his shirt.  A little bubbling well of blood oozed out of his shoulder from the spot with the loose tape and he did not even blink!  I was pretty horrified and immediately thought that all the rest of the tape on his back and shoulders had sores hiding underneath them and rang for the nurse.  There were hot spots.

I looked right into James's eyes and asked him, "Did you not notice the pain on your shoulder and chest?"  He shrugged his shoulders and said, "Not really, I hurt all over."

Today, as the nurses were checking him, I told them that I should have known he would have sensitive skin and explained that he has a check-up with his dermatologist every six months to check for precancerous lesions.  I told them, "No more tape!"  I feel terrible that James has been suffering for days with that tape pulling on his skin.  I had not thought to look under his shirt. I will do a daily body scan now!

James has also had problems with the feedings through his stomach tube.  I had a feeling this would eventually happen.  I was warned by a friend about the poor quality of the liquid food that is given to patients in the hospital.  I decided to place that issue a little lower on my priority list because I wanted James to be stabilized before I started to intervene in his treatment in any way.  I do not have enough knowledge to make a clinical judgment about the quality of his food and the manner in which it is delivered to him.  I have an opinion but that is not enough in this context. If I decided to attempt to change his food and it caused bloating or digestion problems, it might make it more difficult to assess his progress in other areas (swallowing, speech).

James does have a say in his treatment and he finds the food disgusting if they overfeed him.

I am hoping this becomes a non-issue because they will remove his trach and he will begin eating solid foods soon.  I am willing to give him more time with the crappy liquid diet for the sake of continuity.  I did talk with James about telling the nurses not to "push" the food into his tube too quickly and that he has every right to limit the amount the nurses give him per feeding.  James has always been rather sensitive about feeling full.  Again, this is far more than anyone needs to know!  That said, I think we should be better advocates for what happens to our bodies in a hospital setting. Why should a corporate product made with corn syrup as the second listed ingredient be the "best" choice when even the hospital's own dietician confessed to me that she would not eat it.

I was informed today that James has stabilized enough to journey outside!  James's psychologist Sabrina asked me if I would like to take James out.  I said, "Of course, right away!" She explained that some families feel anxious about taking their loved ones outside.  I told her I had absolutely no fears or reservations--that man needs to breath in the spring growth in Central Park.

I have to be trained on pushing James in his wheel chair and the occupational therapist scheduled a session with me tomorrow.  I have a deadline to meet at work but I will work hard to accomplish as much as I can to leave on time for the meeting with the OT.

I am relieved that James is moving in a forward direction but the bacterial infection lingers in the wings.  The resident doctor approached me today because she wanted to speak with the infectious disease doctor that treated James at Bellevue and has not been successful in receiving a response.  I have to look through my records to find her name.

I am able to see her face in my mind but have no memory of any of the doctors names that treated James in the NICU.  There were too many teams and I was sleep-deprived.  I have a vision of every person I talked to--the small details in the features of their faces, the gestures used to place hands in pockets or a nervous sweep of hair--it is all there.  No names.

I heard a perfect hawk screech exiting the subway the other day and thought it was someone's ringtone because it was so pitch perfect.  I did look up though and there was a magnificent bird of prey floating above my head!  He cried again, loud and strong above the uptown traffic. I looked around in amazement to see if anyone else was noticing--not one person!  I stood alone watching it cry as it was being pursued by another bird.  Amazing!

I hope the hawk makes an appearance tomorrow for James's first trip outside!  He told me today that none of this seems real. I want to place a bit of true life in his way.