Friday, 4/28/06-Cath Date Set/Rough Day
We FINALLY have a cath date. She will go for her heart cath and heart biopsy Monday morning at 10:00. We are very nervous about how the sedation will affect her but we are hoping that we get some answers regarding her heart and possibly regarding why she is struggling to get off the vent.
Cedie has not had such a good day today. As soon as she was put on her CPAP this morning she started acting like she was last night when they took her off early. She was unable to keep her CO2 down and her O2 sats up. She was real fussy and she was sweaty. They decided to let her rest a while. She has slept most of today.
This is a repeating pattern for Cedie. She has a stretch of good days and then she falls and we start over. Last time she "fell" we were up to 21 hrs of CPAP and then had to start back at 1 and work all month to get to 16. This is the main reason why we are going ahead with the heart cath and biopsy. Her echocardiograms of her heart have shown some heart defects but it never looked like it should affect her lung function. However, her pulmonologists believe that there is something with her heart that is being missed because they do not think it is the lungs that have the problem. The doctors are cautious of sending Cedie home when they do not know why she has these "falls", when the next fall will be, or even what the extent of the downfall will be.
Hopefully, we will be able to make a care plan for her after Monday's procedures.
This afternoon, Cedie took 12cc from her bottle. She started out good but then she got gassy. We gave her gas meds but after it settled down she did not want anymore of the bottle.
She did sit up for a little while in her new seat. Her nurse hung toys in front of her face and she kept trying to grab at them.
She looked really tired tonight. Her color was not as good as it usually is and you could see her starting to work hard to breathe.
She had a rough night. Her night nurse said that she was not moving air as well as she normally does. She was weezing a little as well.
Cedie has not had such a good day today. As soon as she was put on her CPAP this morning she started acting like she was last night when they took her off early. She was unable to keep her CO2 down and her O2 sats up. She was real fussy and she was sweaty. They decided to let her rest a while. She has slept most of today.
This is a repeating pattern for Cedie. She has a stretch of good days and then she falls and we start over. Last time she "fell" we were up to 21 hrs of CPAP and then had to start back at 1 and work all month to get to 16. This is the main reason why we are going ahead with the heart cath and biopsy. Her echocardiograms of her heart have shown some heart defects but it never looked like it should affect her lung function. However, her pulmonologists believe that there is something with her heart that is being missed because they do not think it is the lungs that have the problem. The doctors are cautious of sending Cedie home when they do not know why she has these "falls", when the next fall will be, or even what the extent of the downfall will be.
Hopefully, we will be able to make a care plan for her after Monday's procedures.
This afternoon, Cedie took 12cc from her bottle. She started out good but then she got gassy. We gave her gas meds but after it settled down she did not want anymore of the bottle.
She did sit up for a little while in her new seat. Her nurse hung toys in front of her face and she kept trying to grab at them.
She looked really tired tonight. Her color was not as good as it usually is and you could see her starting to work hard to breathe.
She had a rough night. Her night nurse said that she was not moving air as well as she normally does. She was weezing a little as well.
posted by Miss N Cedie @ Friday, April 28, 2006
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