Surgery has been rescheduled for July 23rd. Dr. Butto is still going to try and use the device to close the ASD and if successful, we won't have to endure the open heart surgery.
Sophie is amazing. She is so resilient. It is like nothing ever happened and she is happier than ever! The medicine Sophie is on, Keppra, has a 1 in 3 chance of making Sophie extremely irritable. PTL that Sophie wasn't that1....so far. The reason I say so far is because it has only been 2 weeks. 2 weeks isn't a lot of time for that medicine to be in her system.
We just increased Sophie's dosage from 4ML 2x daily to 8ML 2x daily. I am hoping that this increase isn't going to affect her either. Time will tell.
In the mean time, Sophie has started at a new baby sitter. We are truly blessed to have someone with a child that has the same syndrome as Sophie living only 5 minutes away. Cynthia has graciously agreed to watch Little Miss for us. It isn't that our other sitter wasn't good with Sophie, but this is just a better fit for Sophie. Cynthia knows how to work with Sophie in her therapy and what to watch for in regards to seizures. For that, I am thankful.
For Obama Care, I am not thankful! Had to throw that in there.
Sophie spent her early afternoon in a pool with Cynthia, Lukus, and Mattie. Luckily, Cynthia gets my humor when I tell her that if anything happens to Sophie, she dies! :)
Shane just finished up his regular season of baseball. They will have 1 week off and then go in to a play-off game to determine their ranking. Their ranking isn't so great but Shane played on a team where they were taught to play the game fair and clean, not dirty like some of the others. Shane has turned out to be quite the catcher and we are proud of him. He has taken quite a few hits at home base as well and every time, he just stands right back up.
Have a wonderful day and stay cool.
Thursday, June 28, 2012
Thursday, June 14, 2012
Surgery Cancelled
As you know, Sophie was supposed to have her heart surgery done today. Well, things didn't go as planned. My apologies for not letting you all know sooner, but things have been hectic around here and all I have wanted to do it hold Sophie. When I am not holding her I am checking on her every other minute.
I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday. All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably. I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.
Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.
Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.
We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.
From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.
Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.
Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.
I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.
Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.
I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday. All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably. I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.
Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.
Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.
We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.
From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.
Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.
Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.
I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.
Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.
Sunday, June 10, 2012
The 1st of Many to Come
Yesterday, the doctors, Dan, and myself believe Sophie had her very 1st seizure. Usually we celebrate firsts, but not this one. We knew it was coming, but with everything we have read and heard from the doctor, we didn't anticipate it happening already.
I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!
I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.
Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.
U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.
Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.
I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!
I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.
Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.
U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.
Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.
Wednesday, June 6, 2012
June 14th & Odds and Ends
I just received the call, the date is set! Sophie will be having surgery at St. Vincent's Mercy in Toledo, OH on June 14th at 8:00 am.
I spoke with Kimby, Dr. Butto's nurse yesterday and she told me that they were waiting to hear back from the anesthesiologist to see if he could be there.
How this is all happening simply amazes me, not sure if it is in a good way or not yet. Last Wednesday Dan was told we could wait until June 20th to go back and see Dr. Butto and schedule surgery then or we could call and do it sooner. When I spoke to Dr. Butto on Friday he said that he though it needed to be done sooner than later so we made the choice to do it sooner. Dr. Butto didn't have an opening until the end of July and he said she couldn't wait that long. Really? Then why did you tell us we could wait until June 20th when we saw him again?
Instead of waiting until July Dr. Butto made his adult patient take the July opening and Sophie is in the June 14th opening. The peds anesthesiologist is out of town at that time so the adults anesthesiologist is going to be in there with Sophie. Pray for wisdom on his end to know the difference in how much a baby needs and an adult. I know it will all be ok, but extra prayers will never do harm.
In the meantime Sophie is laughing, giggling, rolling all over the living room, bearing weight on her legs, and loves to hang out in her crib. When Dan goes to get her after she wakes from her nap, she will yell at him and get mad because he took her out. She has quite the personality and isn't afraid to "tell you" what she thinks about any given situation. She must get that from her daddy....hahahahahaaa, we all know better! With all of this chaos that we are surrounded by on any given day, one thing that has remained constant and unchanged is Sophie. Yes, Sophie. Even though the chaos is usually stirred up because of her health issues, one would never know. Sophie will brighten your day, make you smile from the inside and because of her, I am a better person, a better mom! Thank you Sophie for being such a bright light in my life.
Shane has passed the 5th grade, by the seat of his pants. This has been a rough year for him with school. It isn't that Shane isn't capable, because he is very bright, but Shane doesn't give two hoots about anything. He doesn't care that he gets a 0 when he doesn't turn in his finished assignments, or he doesn't care when he punches someone for telling him "At least I have a mom"! (We didn't punish him for that because truth be known, I would have punched the kid too)
Shane has a lot on his plate and he is doing the best he can with the hand that has been dealt to him. He plays each card strategically and knows what he is doing. I can't fault him for that. Shane had a great team of teachers behind him this year and I can say that we as a family were blessed to have those women in his life as well as his principal and assistant principal. Shane finished with 4 A's and 3 C's! It could be worse, it has been worse! We just want Shane to do his best and feel good about it. The feeling good about himself is what we are working on now. Thank you Shane for being so refreshing. You are full of life, personality, and kindness. You have a heart of gold. I am proud of the young man that you are trying to become. You are like a diamond in the rough, the best is yet to be seen!
I spoke with Kimby, Dr. Butto's nurse yesterday and she told me that they were waiting to hear back from the anesthesiologist to see if he could be there.
How this is all happening simply amazes me, not sure if it is in a good way or not yet. Last Wednesday Dan was told we could wait until June 20th to go back and see Dr. Butto and schedule surgery then or we could call and do it sooner. When I spoke to Dr. Butto on Friday he said that he though it needed to be done sooner than later so we made the choice to do it sooner. Dr. Butto didn't have an opening until the end of July and he said she couldn't wait that long. Really? Then why did you tell us we could wait until June 20th when we saw him again?
Instead of waiting until July Dr. Butto made his adult patient take the July opening and Sophie is in the June 14th opening. The peds anesthesiologist is out of town at that time so the adults anesthesiologist is going to be in there with Sophie. Pray for wisdom on his end to know the difference in how much a baby needs and an adult. I know it will all be ok, but extra prayers will never do harm.
In the meantime Sophie is laughing, giggling, rolling all over the living room, bearing weight on her legs, and loves to hang out in her crib. When Dan goes to get her after she wakes from her nap, she will yell at him and get mad because he took her out. She has quite the personality and isn't afraid to "tell you" what she thinks about any given situation. She must get that from her daddy....hahahahahaaa, we all know better! With all of this chaos that we are surrounded by on any given day, one thing that has remained constant and unchanged is Sophie. Yes, Sophie. Even though the chaos is usually stirred up because of her health issues, one would never know. Sophie will brighten your day, make you smile from the inside and because of her, I am a better person, a better mom! Thank you Sophie for being such a bright light in my life.
Shane has passed the 5th grade, by the seat of his pants. This has been a rough year for him with school. It isn't that Shane isn't capable, because he is very bright, but Shane doesn't give two hoots about anything. He doesn't care that he gets a 0 when he doesn't turn in his finished assignments, or he doesn't care when he punches someone for telling him "At least I have a mom"! (We didn't punish him for that because truth be known, I would have punched the kid too)
Shane has a lot on his plate and he is doing the best he can with the hand that has been dealt to him. He plays each card strategically and knows what he is doing. I can't fault him for that. Shane had a great team of teachers behind him this year and I can say that we as a family were blessed to have those women in his life as well as his principal and assistant principal. Shane finished with 4 A's and 3 C's! It could be worse, it has been worse! We just want Shane to do his best and feel good about it. The feeling good about himself is what we are working on now. Thank you Shane for being so refreshing. You are full of life, personality, and kindness. You have a heart of gold. I am proud of the young man that you are trying to become. You are like a diamond in the rough, the best is yet to be seen!
Saturday, June 2, 2012
No Date...Yet
I wanted to keep you all informed of what is happening with Little Miss. Sophie's doctor and I finally connected yesterday and he strongly believes the surgery needs to be done now, so we are taking is advice. He said that he is hopeful that the device will work but he can't make any promises.
The good news is that just last week, Dr. Butto did the same procedure on a baby smaller than Sophie and younger and it was successful. Praying the same happens with Sophie.
Dr. Butto's nurse will be calling me to schedule the surgery. As soon as I know the logistics I will let you all know.
Thank you for believing with me that our Jellybean, Little Miss, Sophers, Loomis (Sophie has many adoring names from her fan club), will be perfectly fine after the surgery and that it WILL be a success!
Love you guys!
The good news is that just last week, Dr. Butto did the same procedure on a baby smaller than Sophie and younger and it was successful. Praying the same happens with Sophie.
Dr. Butto's nurse will be calling me to schedule the surgery. As soon as I know the logistics I will let you all know.
Thank you for believing with me that our Jellybean, Little Miss, Sophers, Loomis (Sophie has many adoring names from her fan club), will be perfectly fine after the surgery and that it WILL be a success!
Love you guys!
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