Latest Update
I know that I've been relying on Facebook more than the blog to update everyone on Kennedy's progress. Here is the latest update for right now.
Two weeks ago we were told that they had hoped Kennedy would be discharged by December 22nd. Unfortunately on December 21st, Kennedy had an episode that required stimulation. When this happens it's an automatic 5 days from that point for a discharge. The Doctor overseeing Kennedy's care wanted to make it 7 days though, just to be safe. On Christmas Day, Jonathon surprised us and came up for the day. Kennedy was very excited to see her Daddy. We spent most of the day at her bedside and enjoyed a wonderful dinner at the Ronald McDonald House. Shortly before Jonathon left, Kennedy had a short episode where a Nurse not familiar with Kennedy or her situation stimulated her prematurely, starting the 5 day process over.
When I arrived at the hospital on the 26th, I was told that Kennedy had two episodes requiring stimulation. One happened shortly after we'd left and the other happened that morning. The Doctors were a little concerned about them happening again all of a sudden and ordered a sleep study. Early in the afternoon I spoke with the Pulmonary Doctor who also ordered a swallow study to make sure she isn't aspirating her milk when she's eating and therefore causing a spell to begin. He seemed confident that whatever is going on, her Chiari Malformation/Hindbrain Hernia is where the problem lies.
Around 2:30PM Kennedy had another episode that lasted quite a bit of time. She didn't immediately come out of the episode when stimulated, like she has always done before. Even after coming out of the spell it still took a minute or two before her feed could resume and her color returned to normal.
This morning I was able to be there when the Doctors did their rounds. Her swallow study is scheduled for 1/2 and her sleep study is scheduled for 1/6. The Speech Therapist worked with me this morning during her feeding and said she doesn't think her feeds are directly causing the episodes. She thinks the only way they could be causing them is if she is silently aspirating while taking a bottle. I'm very eager to find out what is causing the spells. Confidently I can say that no matter what the studies reveal we will be here at least until the middle of January.
ETA: I also forgot to mention that Kennedy had her Manual Muscle test on the morning of the 26th. The Physical Therapist was able to determine her lesion is between L5 and S1. She should be able to walk, but may have problems putting her weight on the front of her foot (like one would do when reaching for something). She doesn't know if it's something we could work with her to fix or not, but she recommended holding things above Kennedy's head and forcing her to reach when she's older and can stand. She said this would give us a better idea on whether or not it's fixable.
Two weeks ago we were told that they had hoped Kennedy would be discharged by December 22nd. Unfortunately on December 21st, Kennedy had an episode that required stimulation. When this happens it's an automatic 5 days from that point for a discharge. The Doctor overseeing Kennedy's care wanted to make it 7 days though, just to be safe. On Christmas Day, Jonathon surprised us and came up for the day. Kennedy was very excited to see her Daddy. We spent most of the day at her bedside and enjoyed a wonderful dinner at the Ronald McDonald House. Shortly before Jonathon left, Kennedy had a short episode where a Nurse not familiar with Kennedy or her situation stimulated her prematurely, starting the 5 day process over.
When I arrived at the hospital on the 26th, I was told that Kennedy had two episodes requiring stimulation. One happened shortly after we'd left and the other happened that morning. The Doctors were a little concerned about them happening again all of a sudden and ordered a sleep study. Early in the afternoon I spoke with the Pulmonary Doctor who also ordered a swallow study to make sure she isn't aspirating her milk when she's eating and therefore causing a spell to begin. He seemed confident that whatever is going on, her Chiari Malformation/Hindbrain Hernia is where the problem lies.
Around 2:30PM Kennedy had another episode that lasted quite a bit of time. She didn't immediately come out of the episode when stimulated, like she has always done before. Even after coming out of the spell it still took a minute or two before her feed could resume and her color returned to normal.
This morning I was able to be there when the Doctors did their rounds. Her swallow study is scheduled for 1/2 and her sleep study is scheduled for 1/6. The Speech Therapist worked with me this morning during her feeding and said she doesn't think her feeds are directly causing the episodes. She thinks the only way they could be causing them is if she is silently aspirating while taking a bottle. I'm very eager to find out what is causing the spells. Confidently I can say that no matter what the studies reveal we will be here at least until the middle of January.
ETA: I also forgot to mention that Kennedy had her Manual Muscle test on the morning of the 26th. The Physical Therapist was able to determine her lesion is between L5 and S1. She should be able to walk, but may have problems putting her weight on the front of her foot (like one would do when reaching for something). She doesn't know if it's something we could work with her to fix or not, but she recommended holding things above Kennedy's head and forcing her to reach when she's older and can stand. She said this would give us a better idea on whether or not it's fixable.
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