Daily Grind
Things have been pretty steady in the world of Taylor Stark. He wakes about 6 a.m., gets some meds and meets his day nurse, as the night nurse tags off. One of his parents shows up just before 7 for their turn at the one-on-one time with Taylor, which includes setting up the speakers for music, reading, conversation, or some morning stretches (which if overlooked, he is sure to let it be known). PT, OT and ST show up for their turn with Taylor, and he sits in his “Cadillac Chair” in between. He is a very busy man.
He finally managed to get a hold of his trache last night, and it was all but completely out by the time it was noticed. It was decided that it was no longer necessary anyway, so he succeeded. No more trache. Just a bandage. If he needs another tracheotomy when he has his next surgery in a couple weeks, so be it. They will deal with that when the time comes.
Pretty much all medical has stabilized: sodium and other endocrine issues are manageable with meds; he is only on the last bit of antibiotic (for precautionary measures); no fever since the weekend; sutures from his shunt surgery last week were removed; ehem…and the trache is gone.
Taylor can see intermittently with his left eye – it seems to be contingent on the brightness of the room (still quite dialated), his fatigue or one of the medical issues rearing their ugly heads. His right eye is still quiet, but he has managed to awaken the muscles on the right side of his face around his nose and mouth with his work for speech therapy that he does on his own. He is very determined.
Taylor stands and takes steps among other physical tasks multiple times daily with PT and OT. He has also done many others such as stand at sink and wash his hands, brush teeth, wash his hair, etc., with the help of his wonderful therapy teams. These tasks have only to do with endurance, as he otherwise would have no trouble at all. He is quite ready for Acute Rehab. He is very strong, his muscle tone is already coming back – and he has not yet to even begin the real deal with therapy!
MRI
So the MRI last night showed resolving inflammation/contusions, the ventricles are normal-sized so the shunt is working and overall it was a good scan. Questions remain about the cranial nerves as they were not discussed in the narrative provided by radiology, but answers are expected tomorrow. There was also a collection of fluid that may be normal for the resolving brain trauma, or infection. They took a sample of his CSF through his shunt today to see.
Prayer
When soft restraints were used to protect all his tubes and lines and trache, Taylor’s hands were always positioned so they could be clasped together. He is commonly seen holding his hands together, gazing at the cross on the wall. He has always been strong in his Christian Faith, and when he was in Neuro ICU, he could hardly take his eyes off the cross hanging on that wall (that cross can be seen in a previous journal entry). A family friend, Susie Roemhild, gave Taylor the prayer beads you see in the included picture of his resting hands. So now he has a cross he holds, and when he needs his hands free he wears the beads around his neck, carefully pulling them over his head to place the cross itself on his chest.
…
Last night it was my turn to tuck Taylor in for the night (Ron and I really do have to take turns because we both love those times with him soooo much). As T and I sat on his bed chatting, he pulled my hands and clasped them into his, then he lifted his beads over his head. (I had no idea what he was doing). He positioned his cross directly over his head with one hand, and pulled the end of the bead strand to touch my cheek. Forehead to forehead we bowed our heads and prayed together.
