Overnight (Wednesday -Thursday):
A night filled with some rest, times of turning from side to side, and complaints of pain in the tummy as well as the back. Finding a comfortable position was challenging, but throughout the night we managed to find positions that worked for a short while so Ella could sleep.
Thursday, 12-14-17:
Today was moving day. Ella was transferred from the PICU to the Neurology Floor. With all of her machines and me following behind with her wheelchair, we made the trek from the 16th floor to the 19th. We were no more than in the room and hooked up when the Orthotics Team came to make a casting from her in order to make her specialized TLSO (body brace). The team slipped a cloth onto her like one might slip a cloth onto a rolling pin. The cloth encased Ella from the neck down right past her hips. Then they applied casting gauze; manipulating her body and pushing on the bed as they rolled it under her back. We waited a few minutes as the cast hardened and then they made two cuts down opposite sides of the casting and removed it. All the while Ella screamed and cried. She stopped instantly once it was over...her fear of pain has increased these past days.
The current medication regiment hasn't been working that well so some changes have been implemented. They have tapered back on the narcotics (which make her tummy hurt) and began a regiment of alternating IV Tylenol and Toradol (an IV version of Motrin). The Valium will remain for two reasons--pain and anxiety.
Her nutrition thus far has been through TPN (nutrition going directly into the bloodstream). Tonight, we started g-tube feeding with just Pedialyte. They started at a low rate and will be increasing the rate by +10 ml/hr until it reaches 75 ml/hr while simoultaneously decreasing the TPN rate. Tomorrow we hope to start her on her regular formula.
A smile ran across Ella's face right before the Orthotics Team arrived as she saw Grandma enter the room. A little Grandma time is always good for the soul.
A rough morning has given way to a calm evening as Ella has slept much of the day away.
A night filled with some rest, times of turning from side to side, and complaints of pain in the tummy as well as the back. Finding a comfortable position was challenging, but throughout the night we managed to find positions that worked for a short while so Ella could sleep.
Thursday, 12-14-17:
Today was moving day. Ella was transferred from the PICU to the Neurology Floor. With all of her machines and me following behind with her wheelchair, we made the trek from the 16th floor to the 19th. We were no more than in the room and hooked up when the Orthotics Team came to make a casting from her in order to make her specialized TLSO (body brace). The team slipped a cloth onto her like one might slip a cloth onto a rolling pin. The cloth encased Ella from the neck down right past her hips. Then they applied casting gauze; manipulating her body and pushing on the bed as they rolled it under her back. We waited a few minutes as the cast hardened and then they made two cuts down opposite sides of the casting and removed it. All the while Ella screamed and cried. She stopped instantly once it was over...her fear of pain has increased these past days.
The current medication regiment hasn't been working that well so some changes have been implemented. They have tapered back on the narcotics (which make her tummy hurt) and began a regiment of alternating IV Tylenol and Toradol (an IV version of Motrin). The Valium will remain for two reasons--pain and anxiety.
Her nutrition thus far has been through TPN (nutrition going directly into the bloodstream). Tonight, we started g-tube feeding with just Pedialyte. They started at a low rate and will be increasing the rate by +10 ml/hr until it reaches 75 ml/hr while simoultaneously decreasing the TPN rate. Tomorrow we hope to start her on her regular formula.
A smile ran across Ella's face right before the Orthotics Team arrived as she saw Grandma enter the room. A little Grandma time is always good for the soul.
A rough morning has given way to a calm evening as Ella has slept much of the day away.
