Cedie's Medical History
Cedie was born 6 weeks early because of her mom's out of control blood pressure. She was intubated at birth and taken directly to the NICU. She was extubated 12 hrs later but had to be put under an oxyhood. She was oxygen free after a week but she could not master bottle feeding.
At one month old, they did a swallow test and found that she had severe reflux. During a CT scan, they also found that she had coanal stinosis. This means that her nasal passages are extremely narrow. During an echocardiogram , they found that her heart had a small hole, her PDA was not closed, and her right ventrical was enlarged. We were told that as she grew her heart would get better and her nose would grow. However, as the days went by, she had more and more trouble breathing and eating at the same time. The doctors then decided to send her LeBonheur Children's Hospital in order to get a G-tube to help feed her and have a fundolication (Nissen) done to stop the reflux.
She had these two surgeries done on 7/24/05. She was intubated for the surgery. She stayed intubated for a month after the surgery and was vent dependent. Then, one day in August, Cedie decided she had enough and she extubated herself. They decided to try her under an oxyhood instead of putting her back on the vent. It worked! She went home on 8/19.
On 8/24, she stopped breathing at home and her Daddy had to give her CPR. We then rushed her back to LCH. A broncoscope was done and they found that she has paralyzed vocal cords. On 9/2, she had a tracheotomy. She has been vent dependent since the procedure. We have gotten close to coming off a couple times now. As of 7/1/06, she doesn't require any oxygen support or pressure support. She is on a breaths per minute rate of 12 (very minimal). We still hope to have her off one day.
She has had a heart cath, a heart biposy, a lung biopsy, and many other non-evasive tests (MRI, EEG, etc) in order to try to determine why she is requiring the vent. No luck yet.
In February, after a hearing test, we found that she had severe hearing loss in her rt ear and moderate loss in the left. They did an MRI and found that she had tiny ear canals and fluid build up. The first of March she had tubes put in her right ear to help with the drainage. Her left ear canal was too narrow. She repeated the hearing test in May. This time she had moderate loss in the rt and minimal loss in the lt. In July, her hearing was impaired again. They went in a cleaned out both ears but they could not get a tube in the left ear.
At one month old, they did a swallow test and found that she had severe reflux. During a CT scan, they also found that she had coanal stinosis. This means that her nasal passages are extremely narrow. During an echocardiogram , they found that her heart had a small hole, her PDA was not closed, and her right ventrical was enlarged. We were told that as she grew her heart would get better and her nose would grow. However, as the days went by, she had more and more trouble breathing and eating at the same time. The doctors then decided to send her LeBonheur Children's Hospital in order to get a G-tube to help feed her and have a fundolication (Nissen) done to stop the reflux.
She had these two surgeries done on 7/24/05. She was intubated for the surgery. She stayed intubated for a month after the surgery and was vent dependent. Then, one day in August, Cedie decided she had enough and she extubated herself. They decided to try her under an oxyhood instead of putting her back on the vent. It worked! She went home on 8/19.
On 8/24, she stopped breathing at home and her Daddy had to give her CPR. We then rushed her back to LCH. A broncoscope was done and they found that she has paralyzed vocal cords. On 9/2, she had a tracheotomy. She has been vent dependent since the procedure. We have gotten close to coming off a couple times now. As of 7/1/06, she doesn't require any oxygen support or pressure support. She is on a breaths per minute rate of 12 (very minimal). We still hope to have her off one day.
She has had a heart cath, a heart biposy, a lung biopsy, and many other non-evasive tests (MRI, EEG, etc) in order to try to determine why she is requiring the vent. No luck yet.
In February, after a hearing test, we found that she had severe hearing loss in her rt ear and moderate loss in the left. They did an MRI and found that she had tiny ear canals and fluid build up. The first of March she had tubes put in her right ear to help with the drainage. Her left ear canal was too narrow. She repeated the hearing test in May. This time she had moderate loss in the rt and minimal loss in the lt. In July, her hearing was impaired again. They went in a cleaned out both ears but they could not get a tube in the left ear.
posted by Miss N Cedie @ Tuesday, April 04, 2006
1 Comments:
At 7:37 PM, April 04, 2006,
Anonymous said…
Hey Jen. Mikala has reflux as well. She had surgery for it in 2000. I don't remember what the name of it was but they tied her tummy around her esophagus. She still has to take meds for and it and is facing another possible surgery after this month. I am sure this has been hard for ya'll, you'll be in my prayers. Love you cousin. - Kelly
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