Waking this morning to a strange hush in the house, I stretched out of bed and looked toward the front windows to see tree limbs laden with snow. Snow flakes falling! It made me happy, then instantly fringed in sadness because on such an early snowy morning, I would have returned to bed next to James, feeling safe and warm inside. Instead, I put the kettle on and began the packing of my backpack for a day at the hospital.
Chris and Karen said their goodbyes to James this afternoon but he was deep in sleep and refused to rise out and open his eyes. James had an exhaustive morning with the occupational therapists and then, a rather grand bath with the nurses that tuckered him out. Chris and Karen should feel relieved to know that not long after they left, James opened his eyes as if to say, "Hey, where did they go?" James has learned that an open palm means yes and a closed fist means no--the occupational therapist shared this with me to work on communication with James. It is definitely clearer than my one squeeze for yes, two for no which does become slightly hard to decipher. Plus, James has to work harder to show his palm or close his fist.
James's bed has the capability to morph into a kind of grand chair and the doctors adjusted the bed into a seated position to assist James with his digestion and to keep him moving toward recovery. However, I think it tires James out. I had turned on a little Avro Part that I enjoy listening to while at work and I checked my office correspondence on the lap top. After a bit, James gestured me over to the bed. He mouthed something I could not decipher. He pointed, like a subject in a Renaissance painting, hand slightly tilted at an angle. Did he want me to turn off the music? Leave the room? Get the nurse? No, no, no. Ah-ha! Do you want to lie flat! Yes, that's it. James is completely animated when he wants something. I have to convince him to work harder for the doctors as well.
I met with the social worker today to begin the process to prepare the forms to transfer James to a rehabilitation facility. She met with the entire team to create a profile for James. I also met with the various doctors and the Bellevue rehab doctors. I have trepidations regarding rehab. The NICU has become a cocoon of support with the singular purpose of keeping James alive. I know the rhythm of the day--the quiet moments I have with James massaging his feet or listening to music together as well as the busy whirl of nurses suctioning his trachea or shifting him in his bed. Every simple response that James gives the doctors from opening his eyes to giving a thumbs up receives a rousing round of encouragement from everyone. That will all change in rehab because James will have to work far harder on a daily basis. He is not only fighting to live--he will be working to recover.
In order to be accepted for rehab, James will have to meet a certain criteria. He needs to show that he's a good candidate for recovery. I am worried that he as not shown enough stamina for the work. His body has changed so much in these past few weeks. He would be unrecognizable to those that know him from swimming. He is emaciated and has little purposeful movement of his limbs. It hurts me to look at him--I want to cradle him in my arms and make him whole. The fact of the matter is that I will have to fight the insurance companies and advocate on his behalf to receive the care he will need to recover. Shame on America for this--go out and vote and not for the party that wants to take away your right to healthcare!!! I was told that his case will have to be reassessed every two weeks to continue receiving care. It's a farce. He will need months of rehabilitation not two weeks worth.
I apologize for the anger and frustration in my feelings. It is mostly based on the fear that James will not recover and I will face the obstacles of caring for my disabled love--the mountain looms like the Himalayas rather than our beloved Mount Tamalpais.
I have to take it as it comes and hope that his body with find the strength to recover. It seems so impossible looking at him now. I hope that my fears are misplaced and that he will improve before any other possible complications may arise.
James does spectacular yawns which are the perfect balance to my feelings of desperation. I will be worried, calling his name, asking him to squeeze my hand if he recognizes me and then, he will yawn. It's comical. Like a cat's yawn. I love him so much, it makes me feel silly, similar to a cartoon character skunk in love with a black and white cat.
Chris and Karen said their goodbyes to James this afternoon but he was deep in sleep and refused to rise out and open his eyes. James had an exhaustive morning with the occupational therapists and then, a rather grand bath with the nurses that tuckered him out. Chris and Karen should feel relieved to know that not long after they left, James opened his eyes as if to say, "Hey, where did they go?" James has learned that an open palm means yes and a closed fist means no--the occupational therapist shared this with me to work on communication with James. It is definitely clearer than my one squeeze for yes, two for no which does become slightly hard to decipher. Plus, James has to work harder to show his palm or close his fist.
James's bed has the capability to morph into a kind of grand chair and the doctors adjusted the bed into a seated position to assist James with his digestion and to keep him moving toward recovery. However, I think it tires James out. I had turned on a little Avro Part that I enjoy listening to while at work and I checked my office correspondence on the lap top. After a bit, James gestured me over to the bed. He mouthed something I could not decipher. He pointed, like a subject in a Renaissance painting, hand slightly tilted at an angle. Did he want me to turn off the music? Leave the room? Get the nurse? No, no, no. Ah-ha! Do you want to lie flat! Yes, that's it. James is completely animated when he wants something. I have to convince him to work harder for the doctors as well.
I met with the social worker today to begin the process to prepare the forms to transfer James to a rehabilitation facility. She met with the entire team to create a profile for James. I also met with the various doctors and the Bellevue rehab doctors. I have trepidations regarding rehab. The NICU has become a cocoon of support with the singular purpose of keeping James alive. I know the rhythm of the day--the quiet moments I have with James massaging his feet or listening to music together as well as the busy whirl of nurses suctioning his trachea or shifting him in his bed. Every simple response that James gives the doctors from opening his eyes to giving a thumbs up receives a rousing round of encouragement from everyone. That will all change in rehab because James will have to work far harder on a daily basis. He is not only fighting to live--he will be working to recover.
In order to be accepted for rehab, James will have to meet a certain criteria. He needs to show that he's a good candidate for recovery. I am worried that he as not shown enough stamina for the work. His body has changed so much in these past few weeks. He would be unrecognizable to those that know him from swimming. He is emaciated and has little purposeful movement of his limbs. It hurts me to look at him--I want to cradle him in my arms and make him whole. The fact of the matter is that I will have to fight the insurance companies and advocate on his behalf to receive the care he will need to recover. Shame on America for this--go out and vote and not for the party that wants to take away your right to healthcare!!! I was told that his case will have to be reassessed every two weeks to continue receiving care. It's a farce. He will need months of rehabilitation not two weeks worth.
I apologize for the anger and frustration in my feelings. It is mostly based on the fear that James will not recover and I will face the obstacles of caring for my disabled love--the mountain looms like the Himalayas rather than our beloved Mount Tamalpais.
I have to take it as it comes and hope that his body with find the strength to recover. It seems so impossible looking at him now. I hope that my fears are misplaced and that he will improve before any other possible complications may arise.
James does spectacular yawns which are the perfect balance to my feelings of desperation. I will be worried, calling his name, asking him to squeeze my hand if he recognizes me and then, he will yawn. It's comical. Like a cat's yawn. I love him so much, it makes me feel silly, similar to a cartoon character skunk in love with a black and white cat.
Jennie, thank you for so bravely sharing your anger and frustration and fear with us. I wouldn't expect to feel any differently! I am going to focus my prayers on minimal insurance battles and a rousing rehab team that will cheer James in new and powerful ways. Thank you for keeping us updated!
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