Good Morning! As I am typing this it is raining outside. It is dark and grey, sort of like how I am feeling inside this morning.
As you know from FB posts, Sophie wasn't doing too well with eating after her surgery. When I thought it was getting better, it wasn't.
Sophie is now at Toledo Children's Hospital, room 1517, because she is dehydrated. The doctor told us that her electrolytes showed sever dehydration. They currently have her on an IV and she can only have clear fluids until later this afternoon, early evening. Then we will see if she will take her formula.
I am at work this morning, just where I want to be...NOT, but we have a family to provide for and this job is what pays our bills, along with Dan's. My grandmother is with Sophie right now and then when Dan wakes up, around 1, he will head up there to be with her until I can get there this evening. I will stay the night again, and then leave from there for work. This will be our temporary home until Sophie decides to eat and her diarrhea subsides.
Yesterday they took stool samples from Sophie. They were testing her for C.diff infection. Sophie's visitors as well as nursers, and myself, had to wear gloves and gowns to even touch her. I am sure it wasn't comforting to Sophie not to even feel her mama's touch! Luckily, the test results came back negative so we don't have to "suit up" anymore.
I just called the hospital and they are working on getting Sophie to eat. She is definitely peeing now so they turned her fluids down. Let's hope and pray that helps her want to eat.
Thanks for all the prayers and concern and love for Sophie and the rest of us.
Monday, August 27, 2012
Thursday, August 23, 2012
Unsuccessful Attempt
Today Sophie was to have her ASD closure performed at Mercy St. Vincent's in Toledo. We arrived at 6 am and at 7:30 we were taken down tot he cath lab.
The ride was all to familiar. I was on the bed with Sophie and heading down the ramp we put our hands in the air like we were riding the roller coasters at Cedar Point. Something we did last year as well. We try to make the best of these situations.
At 8 am Dr. Butto arrived and Sophie had fallen asleep in my arms. My baby girl didn't even cry for food today. He said he was going to go in, do his best, and he would see us when he was finished.
Around 9 a nurse came out and told us that he gained access in through her veins through her legs.
Around 10 she came back out and said that Dr. Butto was taking measurements.
About 10:30 she came out again and said he was attempting to put the device in place.
Not much after 11 she came to get us saying he was finished and that he would talk with us now. We headed back to the lab. We were excited because we really thought that the surgery went so well, no hiccups, and he finished in just over 3 hours.
We go in to the lab and Dr. Butto has a smile on his face. This smile I believe is permanent. It is there with good news and bad. The next thing he said....the hole was too big and he couldn't do it.
Sophie is now going to be having open heart surgery at U of M. We aren't sure when this is going to take place, but it will be soon. The pressure in her lungs is between 60 - 70 and her first surgery, it was around 40 and he thought that was high.
In recovery Sophie didn't wake up too well from the anesthesia. She was really groggy, in pain it seemed, and just not waking up normally. The doctor ordered Morphine. So, Sophie slept and slept and slept. When she finally started to wake up around 3:30 we tried to give her pedalyte, formula and she didn't want any of it. Then she took about 1 ounce of apple juice.
Sophie was still not awake and the really needed her to eat more. Because she wasn't eating they gave Sophie fluids through her iv.
At 6:30 they said as long as we were comfortable we could take her home but that if we weren't they would keep her. By 7 we were out of there.
We have been home about an hour and she has taken 3 ounces of formula. Yay Soph!
I will keep you posted as we take this journey, together!
The ride was all to familiar. I was on the bed with Sophie and heading down the ramp we put our hands in the air like we were riding the roller coasters at Cedar Point. Something we did last year as well. We try to make the best of these situations.
At 8 am Dr. Butto arrived and Sophie had fallen asleep in my arms. My baby girl didn't even cry for food today. He said he was going to go in, do his best, and he would see us when he was finished.
Around 9 a nurse came out and told us that he gained access in through her veins through her legs.
Around 10 she came back out and said that Dr. Butto was taking measurements.
About 10:30 she came out again and said he was attempting to put the device in place.
Not much after 11 she came to get us saying he was finished and that he would talk with us now. We headed back to the lab. We were excited because we really thought that the surgery went so well, no hiccups, and he finished in just over 3 hours.
We go in to the lab and Dr. Butto has a smile on his face. This smile I believe is permanent. It is there with good news and bad. The next thing he said....the hole was too big and he couldn't do it.
Sophie is now going to be having open heart surgery at U of M. We aren't sure when this is going to take place, but it will be soon. The pressure in her lungs is between 60 - 70 and her first surgery, it was around 40 and he thought that was high.
In recovery Sophie didn't wake up too well from the anesthesia. She was really groggy, in pain it seemed, and just not waking up normally. The doctor ordered Morphine. So, Sophie slept and slept and slept. When she finally started to wake up around 3:30 we tried to give her pedalyte, formula and she didn't want any of it. Then she took about 1 ounce of apple juice.
Sophie was still not awake and the really needed her to eat more. Because she wasn't eating they gave Sophie fluids through her iv.
At 6:30 they said as long as we were comfortable we could take her home but that if we weren't they would keep her. By 7 we were out of there.
We have been home about an hour and she has taken 3 ounces of formula. Yay Soph!
I will keep you posted as we take this journey, together!
Tuesday, August 7, 2012
Signs of Normalcy
Yes, you read correctly! Sophie had her follow up EEG on Friday. This was the first one since they started her on the steroids. It was a 2 hour EEG and then entire time, on and off, I was TELLING God that He needed to make her EEG better this time around. I told Him I couldn't take anymore of these meds or I was going to lose it.
Well, prayers answered. The doctor came in and told me that it was good news and then she showed me Sophie's EEG from July and then this one and it was like night and day. I almost started crying, I was overcome with joy and relief.
Not only was it better, I was told that they even saw signs of normalcy and that was better than expected. We have now began the step down process for her steroids and it is going well. Sophie is still not happy and I was cautioned that she may not be for about another month. Small improvements every day make it easier to handle.
Sophie also has thursh. One more reason to not like the steroids. Doc. Nuga gave her nystatin. The day I gave it to her she kind of choked on it and then was horse and wheezy. I just thought a possible cold. Dan asked me to take her in because he was afraid of something worse. So, I did. Once we got there, waited 2 hours, we were seen and then rushed, by ambulance to Toledo Children's. I guess Soph just missed the nurses there. They rushed her in because her O2 level was in the 80's and her heart rate was 160. NOT a s good combination. We were admitted and they determined it was a "virus"! Right, ok. What they really meant to say was that they didn't know what was really wrong with her. Chest xrays were perfect, heart was good, and there wasn't anything in her throat showing something worse than her thrush. We were sent home on breathing treatments every 4 hours!
We are home. Sophie is cranky and still horse. She sees doc Nuga Friday so hopefully have answers. Sophie is scheduled for August 23rd for heart surgery and here is to believing that nothing gets in the way!
Oh, and I apologize for the spelling error on my last post. I am particular about that but I missed it. Don't be shocked if I missed in this one too, my computer is acting funny!
Well, prayers answered. The doctor came in and told me that it was good news and then she showed me Sophie's EEG from July and then this one and it was like night and day. I almost started crying, I was overcome with joy and relief.
Not only was it better, I was told that they even saw signs of normalcy and that was better than expected. We have now began the step down process for her steroids and it is going well. Sophie is still not happy and I was cautioned that she may not be for about another month. Small improvements every day make it easier to handle.
Sophie also has thursh. One more reason to not like the steroids. Doc. Nuga gave her nystatin. The day I gave it to her she kind of choked on it and then was horse and wheezy. I just thought a possible cold. Dan asked me to take her in because he was afraid of something worse. So, I did. Once we got there, waited 2 hours, we were seen and then rushed, by ambulance to Toledo Children's. I guess Soph just missed the nurses there. They rushed her in because her O2 level was in the 80's and her heart rate was 160. NOT a s good combination. We were admitted and they determined it was a "virus"! Right, ok. What they really meant to say was that they didn't know what was really wrong with her. Chest xrays were perfect, heart was good, and there wasn't anything in her throat showing something worse than her thrush. We were sent home on breathing treatments every 4 hours!
We are home. Sophie is cranky and still horse. She sees doc Nuga Friday so hopefully have answers. Sophie is scheduled for August 23rd for heart surgery and here is to believing that nothing gets in the way!
Oh, and I apologize for the spelling error on my last post. I am particular about that but I missed it. Don't be shocked if I missed in this one too, my computer is acting funny!
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