6/28/06- Back Home Again
We are now back at home after our two day stay at our second home, LBCH. Cedie has an ear infection and a viral tracheaitis. We were sent home with amoxicilin and tylenol with orders to go see the ENT doctor tomorrow. Sorry I couldn't post sooner. So here's what happened over the past few days:
Saturday night we did not have a nurse. It was a rough night because Cedie didn't sleep well. Sunday we managed to go to church but we came back home and just vegged out - we didn't have a day nurse for Sunday either. As Sunday went on, Cedie slept alot but her breathing rate was faster than normal and she kept waking up crying. She was only content when we held her or when she was asleep.
Monday she ran low fevers all day (around 100 or so). Her breathing rate was even faster than it was on Sunday. Also, her eyes were constantly draining yellow goo. I called the pulmonologist and her PCP. By the time they called back it was 4:30pm and it was too late for my PCP to see us. The pulmonologist wanted a blood gas and a chest x-ray done right away in case she developing pneumonia or something. He told us to take her to the ER to have those two things done since we couldn't get to Dr. Best.
So we loaded her up with the intention of only being gone a few hours. We didn't take the power cord for the vent (the marine battery lasts 4 hours and the internal one lasts 45 minutes). We didn't bring meds or extra clothes. The doctor called ahead for us so we didn't have to wait with all the other children and that was a plus. They took the blood gas and it looked great. They looked at the x-ray and it looked like her previous one. However, they wanted to find out why she was running fever(it was 102 when we got there), breathing fast, and have so much eye gunk. They took blood, urine and secretion (from trach and eyes) cultures. Then they said they needed to watch her over night.
They didn't have any beds open in TCU and she is too much to go to the floor so she had to go to ICU. They stuck her in a spot right in the middle and I then knew there was no way I could leave her alone. She had a really sweet nurse (thanks Amanda) but I was afraid some trauma would wake her up and she wouldn't know where she was and what was going on. Therefore, I stayed up with her all night. At 2:30am, my head was spinning so I sat in a recliner in the waiting room and tried to close my eyes. I gave up on that at 5am and went back to Cedie. Around 12pm Karen (one of Cedie's nurses from TCU) came up there to rock Cedie while I left to take a shower and a much needed power nap.
I thought we'd leave after rounds but the docs decided they wanted to wait for the culture results to come back. They take 24 hours. Unfortunately, the 24 hours wouldn't end until after the docs are done for the day. Fortunately, a spot opened up in TCU so that at least she could spend the night in TCU where she would have her own room and the nurses & staff would all know her. Everyone was excited to see Cedie and kept talking about how much she has grown. It was nice seeing everyone again (even though a quick visit minus all the sticks and xrays would have been nicer :-))
Overall it wasn't so bad. I really broke down in the ER when they said we had to stay because all I could think of was back in August when they said we'd get the trach, stay a day or so more and then be on our way. As you all know, that was certainly not the case. However, this time it really was only a couple nights.
She is now resting in her bed and she looks much happier. She knows this is were she is supposed to be.
Saturday night we did not have a nurse. It was a rough night because Cedie didn't sleep well. Sunday we managed to go to church but we came back home and just vegged out - we didn't have a day nurse for Sunday either. As Sunday went on, Cedie slept alot but her breathing rate was faster than normal and she kept waking up crying. She was only content when we held her or when she was asleep.
Monday she ran low fevers all day (around 100 or so). Her breathing rate was even faster than it was on Sunday. Also, her eyes were constantly draining yellow goo. I called the pulmonologist and her PCP. By the time they called back it was 4:30pm and it was too late for my PCP to see us. The pulmonologist wanted a blood gas and a chest x-ray done right away in case she developing pneumonia or something. He told us to take her to the ER to have those two things done since we couldn't get to Dr. Best.
So we loaded her up with the intention of only being gone a few hours. We didn't take the power cord for the vent (the marine battery lasts 4 hours and the internal one lasts 45 minutes). We didn't bring meds or extra clothes. The doctor called ahead for us so we didn't have to wait with all the other children and that was a plus. They took the blood gas and it looked great. They looked at the x-ray and it looked like her previous one. However, they wanted to find out why she was running fever(it was 102 when we got there), breathing fast, and have so much eye gunk. They took blood, urine and secretion (from trach and eyes) cultures. Then they said they needed to watch her over night.
They didn't have any beds open in TCU and she is too much to go to the floor so she had to go to ICU. They stuck her in a spot right in the middle and I then knew there was no way I could leave her alone. She had a really sweet nurse (thanks Amanda) but I was afraid some trauma would wake her up and she wouldn't know where she was and what was going on. Therefore, I stayed up with her all night. At 2:30am, my head was spinning so I sat in a recliner in the waiting room and tried to close my eyes. I gave up on that at 5am and went back to Cedie. Around 12pm Karen (one of Cedie's nurses from TCU) came up there to rock Cedie while I left to take a shower and a much needed power nap.
I thought we'd leave after rounds but the docs decided they wanted to wait for the culture results to come back. They take 24 hours. Unfortunately, the 24 hours wouldn't end until after the docs are done for the day. Fortunately, a spot opened up in TCU so that at least she could spend the night in TCU where she would have her own room and the nurses & staff would all know her. Everyone was excited to see Cedie and kept talking about how much she has grown. It was nice seeing everyone again (even though a quick visit minus all the sticks and xrays would have been nicer :-))
Overall it wasn't so bad. I really broke down in the ER when they said we had to stay because all I could think of was back in August when they said we'd get the trach, stay a day or so more and then be on our way. As you all know, that was certainly not the case. However, this time it really was only a couple nights.
She is now resting in her bed and she looks much happier. She knows this is were she is supposed to be.
posted by Miss N Cedie @ Wednesday, June 28, 2006
1 Comments:
At 6:33 PM, June 28, 2006,
Anonymous said…
Jenn and Cedie,
you will continue to be in my prayers as this thing quickly leaves your body and you are on your road to pursue happiness and good times ahead. I followed you from "Max's" page and have been saying prayers this trip to the ER ended quickly.
Love to you both from the PNW
Ang
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