2020 10 23 rehab

 2020 10 23 Friday

Morning Boston childrens Hospital

Afternoon Spaulding Rehabilitation

Alex has transitioned again between Boston Childrens Hospital and a rehabilitation facility.

We are on day seventy something and have a long road ahead of us for recovery. We continue to adjust medicines and feeding in order to get him up early and keep him awake long enough to participate in therapy sessions.

As of this morning Alex is able to sit for a while unassisted. If he sits for to long, he loses strength and leans over. He us able to stand up about ten times for 10 second each time three times a day. After the stands he is exhausted and needs a break. He is able to show signs that he will be able to grab and release objects. He hasn't spoken other than a few times of saying "E Pa" three times.  We are in rehabilitation and we will work on adjusting seizure meds ( he is currently have 7 to 12 a day). We work on preparing him to get back to sitting, standing, walking, talking.  He isn't yet focused, we don't know what he sees. He turns his head sometimes, but not certain of how clear his vision is. Every medicine that he is on have side effects. Many of the medicines cause issue to his vision. We don't know if his vision is impaired from surgery, trauma, stroke, infection, or medicine, right now only time and medicinal adjustments will help answer those questions.

We left the Boston Childrens Hospital behind us, we will return for follow up exams in the next couple of weeks before we know how to proceed with infection and seizure medications. Today we are in a rehab facility, this is where we need to get our walk, talk and grip on... We have a long road....but this looks like the place to be!

Writing from the first night.

I lay on a couch about ten feet from my sleeping child.  It is something after ten and I can hear the quiet ticking of the wall clock about fifteen feet away. I have a ringing in my ears from the past seventy something days of hospital noise, this silence allows me to realize that there is a ringing that I didnt know existed. Its almost like that sound we hear after a rock concert. Well, it is not quite that....but there is ringing. I am ten feet away. I can see my son, nothing blocks my vision, no wires, no IV lines, no respirator, no eeg lines, no machines. It is quiet. I can hear my son breathing. I can hear him breathing...I haven't heard that sound for over seventy days. In this recent past, it has been mechanical systems, machines, pumps, alarms, dings, beeps, etc.

In the present, It is quiet, It is peaceful, this looks and sounds like the right place for our recovery.

There are only 12 kids on this floor in therapy at a time. It is very quiet during sleep time and it is pretty busy during the hours where kids do thier therapies.

Alexs room overlooks the Charlestown Naval Yard and the Boston Harbor.

He is able to watch a lot of boats coming in and out, we see the tug boats in and out of port but can not hear a thing.

Alexs room door is wide open and there have been no sounds from the hall in over 20 minutes. There have been no alarms, no dings, no codes called over the intercoms. There is no evidence of nurse chatter and no consistent shuffling of feet nor babies crying.  If the sounds exist, we have not heard them.

Covid rules have me quarantined with Alex. We are here and we will be getting to work. For sanity we have a wonderful view of the harbor and the peacefulness of theses still waters. We watch as large boats drift in and out. We watch as smaller boats make the ripples that disrupt the peaceful waters. Below our room is a playground. We watch the kids play from our window. It looks fun from behind this window that ia 8 floors up. From behind this window we look out and pray for the day that we may be out there looking in.