2020 08 30

 2020 08 27

Sunday Day 24

Saturday was a better day

Today (Sunday) we hope to follow in the footsteps of Saturday with a little more improvement. Alex  is Still in the Intensive Care Unit. Still on 1 sedative. Respirator just came of at 10:00am. Still on tylenol and motrin.  Still on 2 antibiotics. . Still on 2 medicines with attempt to control what they may or may not believe is "dis autotomia???". We are now on 4 antiepileptic drugs. lamictal, epidiolex. Kepra and vinpat. Still on Nutrition through a J tube, but will change the consistency and add fiber. He is Still on all types of pressure cuffs massaging his legs, etc.

Saturday we were able to do physical therapy a few times and he is begining to react a little stronger.

Saturday he was a lot more awake.

The sedation medicine (medaz....) Is being reduced every 12 hours. As it is reduced we see him a little more awake. Saturday afternoon he woke up at 2pm and remained wide awake and craving attention for 6 hours.

At 8pm he started twitching and showing signs of pain. They removed his breathing tube this morning and have been giving him pain medicines.

This morning he laughed for us a few times while we showed him his favorite bowling pin toys from home.

It was a breath if fresh air to finally see his eyes open for more than a 10 minute period.  The Doctors and nurses would come into the room to medicate and or adjust him and or turn off the beeping machines that supply the medicines or feeds through the several iv lines. They see that he is awake and say..."ok buddy....it is time to get some rest"

Mom or I step away and hope he takes a nap so that he can come back stronger.....but he lays there. He turns his eyes toward mom or I and just watches. Earlier in the week I had placed a maraca in his hand and told him..."if you want me to sing or play...shake your maraca and I will come". He lays in bed, eyes looking my way. I drift off to a much needed nap and he shakes the maracas. The nap can wait...I go hang out bedside again.  Saturday was a blessing, Alex was making progress in showing us that he can watch us and he can start moving hands a little. Saturday night he started doing some strange twitches that present as if he is in pain. We do not yet know what that is...so that appears as if it will be the next challenge.  Seizure wise, At home he was having 12 during daytime.  Last Sunday without seizure meds he recorded 26,  Monday 8, Tuesday 2. Wednesday the leads were off so could not record,  Friday 4? Saturday not sure maybe 0-4?  Alex is being monitored by video and eeg leads. The neurologists reading the information all have varying opinions of what is or what isn't a seizure.  If we see something that appears to be an episode we push a red button and the team replays the video and eeg reading to see if it recorded as an epileptic episode or not. Some of the button pushes don't record as episodes.

This morning his respirator came off. We can finally see his face.

This morning he laughed at a little sill game. What joy to see.

We pray for forward motion. We pray that the road ahead flattens out a little.  It has been pretty darned bumpy for past twenty something days.  Everyone tells us that we have a long road ahead...we get it...we know...that God that we have awesome support....

Prayer.

Lord thank you for a start in the recovery. We ask for complete, whole body recovery. Lord only you can bring this all together at your will.

We pray to you Lord through the intercessions of Mary. Joseph. St. Anthony, St. Jude, St. Lawrence, St. Gerard, St. Perigrine, St. Pio.

We pray that all of our angels and Saints (named or unnamed) intercede for us.