Monday, 30 March 2020

The surgery to close the tracheostomy was successful, but the recovery was really hard. A few hours after we returned to the rehab center, Nathaniel started to bleed from the wound. At first it was just through the drain that they had inserted. It was assumed to be normal, but then it got stronger and blood started spurting out. At that point, we called the ENT doctors. They sent us immediately back to surgery to redo the procedure, which the doctors also said was a success. This time, no bleeding. Still, two times of full anesthesia within a few hours is hard. Nathaniel was really weak for a several days and developed fevers. The last one was Thursday, a few days after the surgery. Now he has a cough, but he's getting better at swallowing. He didn't need to really swallow when there was a hole in his throat. The phlegm just exited that point. Now he has to work at it. The stitches came out two days ago. One big advancement that we noticed, even right after the surgery, was that he now vocalizes. He doesn't speak, but he does make spontaneous vocal noises. We are working to teach him how to use his voice. Once, he even made a two-syllable vocalization, like talking.

In physical therapy, they started to teach him to walk. His left leg can make the movement, but not his right. Maybe in a few years, yes years, he might be able to walk, or at least be able to be mobile in an upright position. Still, it's nice to see the improvement.

Nathaniel can count on his fingers. For example, if we ask him to show us "2", he puts up two fingers. He can do that until 5. We are working on 6-10 (using his thumb as "6", thumb and index finger as "7", and so forth). Using playing cards, we ask him to pick the higher card or the lower card. He's pretty accurate, but not 100%.

A few days ago, Nathaniel had the last expansion in his skin/scalp expander. It was a bit painful, but he didn't need any pain killers. Now we just have to wait until he can have the cranioplasty. With corona, who knows when that will be? I am not even sure whether the bone graft has even been made, yet. I guess it depends on where the manufacturing plant is and how it has been affected. Theoretically, he could have the surgery any time, but with the health system so stretched due to corona, is that really a good idea? I assume we'll be waiting a long time.

Nathaniel is showing more control using his left hand. He used to be right-handed, but he's having to readjust. Using his left hand, he is able to draw some letters and make some shapes. Some days he enjoys using different colors, sometimes not.

With corona, everything at the rehab center is changing, sometimes by the hour. Some therapy sessions have been cancelled, some reassigned to other therapists. Every day is a surprise. The nursing staff is working 12-hour shifts, which is really hard. We are settling into the unknown and taking day by day. We are used to that, but this is even more. I have permission to drive to/from the hospital. Only one person is allowed to be with Nathaniel at a time, so Joe stays home and is the one to do the food shopping. On the positive side, the roads are empty and there is no problem finding parking. At least there are positive sides of corona. Still, I feel like maybe I am Typhoid Mary–I'm healthy, but maybe spreading the disease to others.

May everyone stay healthy from corona.