Yesterday, on Sophie's first day of Kindergarten, I finally heard back from the doctor. Her blood work was normal and we're upping her one dose at bedtime. So, Monday after her first day of school we gave her three pills at the end of a very long day. My daycare provider sent me a text today that she saw numerous seizures and that Sophie was very hungry! Every time we've upped her dose, she's responded with ravenous hunger so I'm not really surprised just concerned about how it will affect her tomorrow.
Luckily, she fell right to sleep tonight, so hopefully she'll be well rested for Kindergarten tomorrow but she may still be hungry. I emailed her teacher tonight to let her know that Soph's dose has gone up but in the mean time she may notice seizures and that she will notice Soph's hunger for sure. So, I've packed: a pair of Swiss cake rolls, fruit snacks, a go-gurt, mandarin oranges, raisins, a turkey and cheese sandwich, a plum, a blueberry breakfast bar, and a danimals smoothie...hopefully she'll make it through the day. We've talked about this with her teacher already so she is aware that Sophie may need extra snacks, hopefully her fellow class-mates are as okay with it as her teacher is.
Thanks for caring!
Tuesday, August 28, 2012
Thursday, August 23, 2012
Where'd the rug go?
After a few wonderful weeks of Sophie being the girl she was a couple years ago again, over the past few days it's unfortunately changed. Maybe Saturday her mood returned to how it was before the medicine: crabby. We could see an obvious change from the girl we'd rediscovered to the girl we've come to know so well. Our first thought was that she wasn't sleeping well again.
We began putting her to sleep earlier, letting her sleep later, and encouraging naps. Despite that, I was noticing moments when her speech would slow, and she'd stare out--I didn't see her eyes flutter up though...until yesterday at dinner. I've been suspecting that she's been having her seizures again since the weekend but last night we confirmed it. As we sat eating dinner, Joe and I looked at one another and nodded our heads--she'd definitely "fluttered" away.
Today I called the neurologist and spoke with a nurse. She took down the changes and said she'd call me back. After about three hours, she did. She let us know we need to have Sophie's blood work done again before her morning (6:45 am) dose of the medicine. Luckily the lab opens at 6:00 so we'll get in there and hopefully be able to reclaim our routine without much difference. The nurse said once the results were faxed to them, they'd call us.
A friend of mine who is the nursing director of the hospital I work at, suggested yesterday when I mentioned things were shifting, that perhaps her Depakote level had become toxic which would cause similar results. She guessed we'd need blood work done--she was right about that. I'm hopeful that it's not toxic and she just might need a little more--I'd hate to know we've been giving her this medicine for two weeks at a toxic level.
So, wish us luck tomorrow morning with the blood draw. Say a little prayer for us if you pray. Luckily, after it we'll be picking up doughnuts for the daycare the girls go to--Sophie always gets a reward after being poked plus it's the end of their two weeks in daycare together, on Monday Sophie starts Kindergarten and Wendi starts daycare at my work three days a week.
I feel that I'd really adapted to the new Soph. I feel empty of energy to put into this again. I'm curious, who pulled out the rug from under us just after we got our footing? I'm hopeful that this will be easy to solve. I'm grateful for a supportive community.
We began putting her to sleep earlier, letting her sleep later, and encouraging naps. Despite that, I was noticing moments when her speech would slow, and she'd stare out--I didn't see her eyes flutter up though...until yesterday at dinner. I've been suspecting that she's been having her seizures again since the weekend but last night we confirmed it. As we sat eating dinner, Joe and I looked at one another and nodded our heads--she'd definitely "fluttered" away.
Today I called the neurologist and spoke with a nurse. She took down the changes and said she'd call me back. After about three hours, she did. She let us know we need to have Sophie's blood work done again before her morning (6:45 am) dose of the medicine. Luckily the lab opens at 6:00 so we'll get in there and hopefully be able to reclaim our routine without much difference. The nurse said once the results were faxed to them, they'd call us.
A friend of mine who is the nursing director of the hospital I work at, suggested yesterday when I mentioned things were shifting, that perhaps her Depakote level had become toxic which would cause similar results. She guessed we'd need blood work done--she was right about that. I'm hopeful that it's not toxic and she just might need a little more--I'd hate to know we've been giving her this medicine for two weeks at a toxic level.
So, wish us luck tomorrow morning with the blood draw. Say a little prayer for us if you pray. Luckily, after it we'll be picking up doughnuts for the daycare the girls go to--Sophie always gets a reward after being poked plus it's the end of their two weeks in daycare together, on Monday Sophie starts Kindergarten and Wendi starts daycare at my work three days a week.
I feel that I'd really adapted to the new Soph. I feel empty of energy to put into this again. I'm curious, who pulled out the rug from under us just after we got our footing? I'm hopeful that this will be easy to solve. I'm grateful for a supportive community.
Friday, August 10, 2012
Weekly Update #1
We've had a very eventful week with Sophie:
First, her physician called and the MRI was completely normal. The only thing it did show was Sinusitis. We're thinking this is related to the "breath holding" and will be taken care of when we get her to the pediatric ENT and her adenoids/tonsils are assessed.
Second, we are not seeing seizures any longer. During the late half of this week, neither Joe or I have seen any seizures. We're hoping that they're done and medication is working just as it's supposed to. Hurrah! On a related note her mood is also MUCH better. She's playing nicely with her sister, she's using her manners, and she's much kinder to all of us.
Third, today was her last day of pre-school! Next stop Kindergarten. A great aside to this is that today her teachers stopped me to say that, they don't know what's happened but over the past two weeks, "She's really come out of her shell!" She's participating in group time, volunteering to answer questions during reading time, and she's engaging in conversation! If you know Sophie at all you'll recognize that this is a huge achievement. Usually we get reports from her teachers saying they couldn't evaluate her due to her shyness and unwillingness to participate. Everything is turning around.
Sometimes I just give her a big hug saying, "I'm so glad you're back!". She really is back!
First, her physician called and the MRI was completely normal. The only thing it did show was Sinusitis. We're thinking this is related to the "breath holding" and will be taken care of when we get her to the pediatric ENT and her adenoids/tonsils are assessed.
Second, we are not seeing seizures any longer. During the late half of this week, neither Joe or I have seen any seizures. We're hoping that they're done and medication is working just as it's supposed to. Hurrah! On a related note her mood is also MUCH better. She's playing nicely with her sister, she's using her manners, and she's much kinder to all of us.
Third, today was her last day of pre-school! Next stop Kindergarten. A great aside to this is that today her teachers stopped me to say that, they don't know what's happened but over the past two weeks, "She's really come out of her shell!" She's participating in group time, volunteering to answer questions during reading time, and she's engaging in conversation! If you know Sophie at all you'll recognize that this is a huge achievement. Usually we get reports from her teachers saying they couldn't evaluate her due to her shyness and unwillingness to participate. Everything is turning around.
Sometimes I just give her a big hug saying, "I'm so glad you're back!". She really is back!
Friday, August 3, 2012
Woops, I forgot
There was one part of the story from yesterday that I forgot about until half way through my day today. After the MRI was completed, the Pediatric Anesthesiologist came into the recovery room to let us know that Sophie needs to be referred to a Ped's ENT for a sleep study. She apparently did a lot of "breath holding" during the MRI, which can be expected per the Anesthesiologist when one is under sedation but not to the extend that Sophie was doing it. She asked if Soph snores, to which I replied, "Yes, and I talked to her pediatrician about that earlier this month but he said her tonsils look fine." The doctor yesterday, did not agree.
So, we called our usual Pediatrician today who gave us the name of a Ped's ENT he suggests for the evaluation. If it's not one thing, it's another. But on the good side, if this will help my daughter get a good night's sleep in the end, I'm all for it. I love the little girl I am getting back and I've been missing her for a long time.
So, we called our usual Pediatrician today who gave us the name of a Ped's ENT he suggests for the evaluation. If it's not one thing, it's another. But on the good side, if this will help my daughter get a good night's sleep in the end, I'm all for it. I love the little girl I am getting back and I've been missing her for a long time.
Thursday, August 2, 2012
MRI--Long Post, Sorry
Well, what a day! To start the day off, Sophie fought her medication tooth and nail this morning. She wanted nothing to do with drinking it and does not understand what "clear liquids only" means. Luckily today was her first morning on two pills and we think she got down about one and a half, so I take it as an accomplishment.
Arriving to the hospital went smoothly, and we got into day surgery way ahead of schedule. The nurses and doctors were great, and we were all very comfortable. Sophie drank the initial sedative with no issue, but hated the effect. She became SO crabby along with loopy and tired. She got off to the MRI without any real issues though. They updated us throughout the process and she was done within an hour and a half.
Waking up from the sedation was a different story--what was expected to take between 15 and 45 minutes, ended up taking over two hours! She just struggled coming to, and even after she did wake up after an hour and a half, she could not hold up her head and it was like holding an extra-large infant as her neck bobbled all around! Once we got her dressed and somewhat ready to go, she fell right back to sleep. By 11:45 we finally left Day Surgery to head up to her doctor.
The doctor's visit was great. He explained what showed on her EEG which was sudden large bursts of electricity while she was sleeping-- they happened drastically and frequently, besides the more normal (for Absence Seizures) bursts when she was awake. He did not have the MRI results but continues to be hopeful that the medication will stop her seizures. He said that after two full weeks on her current does of Depakote (250 in the morning and 250 in the evening) the seizures should stop completely. If not, then we can go up one more pill at night, but he hopes that won't be needed. He is also confident that we'll get her stable enough on the medication to be alert during school.
The more long-term story he is leaving up to us. He stated that if, in three years, she hasn't had any seizures, we can decide if we want to try weaning off the medicine to see if she can handle it; or, if we aren't comfortable with weaning her yet, we can continue on it. He focuses on treating the child rather than the test results and doesn't think we'll need another EEG if we believe she seems more stable! Big sigh of relief on that one--no more 3:00 am mornings any time soon. The only bad news is that she will need to have her blood work done every few months--not too bad.
When we arrived home she was exhausted and spent the early part of the afternoon in our bed. The one time she got out of our bed, she went to her own and threw up all over it! I called Day Surgery and this is normal after sedation and it was the only time it's happened since we've been home (I have to say that honestly, I was more upset that I changed her sheets LAST NIGHT than that she got sick). The rest of the day has gone well. Her energy is back up, she just took her evening dose of medicine and tomorrow she's back to Pre-School and I'm back to work...and in just three weeks she's off to Kindergarten. I don't think this could have been done with better timing. She should stop having seizures just in time to start Elementary School :)
Arriving to the hospital went smoothly, and we got into day surgery way ahead of schedule. The nurses and doctors were great, and we were all very comfortable. Sophie drank the initial sedative with no issue, but hated the effect. She became SO crabby along with loopy and tired. She got off to the MRI without any real issues though. They updated us throughout the process and she was done within an hour and a half.
Waking up from the sedation was a different story--what was expected to take between 15 and 45 minutes, ended up taking over two hours! She just struggled coming to, and even after she did wake up after an hour and a half, she could not hold up her head and it was like holding an extra-large infant as her neck bobbled all around! Once we got her dressed and somewhat ready to go, she fell right back to sleep. By 11:45 we finally left Day Surgery to head up to her doctor.
The doctor's visit was great. He explained what showed on her EEG which was sudden large bursts of electricity while she was sleeping-- they happened drastically and frequently, besides the more normal (for Absence Seizures) bursts when she was awake. He did not have the MRI results but continues to be hopeful that the medication will stop her seizures. He said that after two full weeks on her current does of Depakote (250 in the morning and 250 in the evening) the seizures should stop completely. If not, then we can go up one more pill at night, but he hopes that won't be needed. He is also confident that we'll get her stable enough on the medication to be alert during school.
The more long-term story he is leaving up to us. He stated that if, in three years, she hasn't had any seizures, we can decide if we want to try weaning off the medicine to see if she can handle it; or, if we aren't comfortable with weaning her yet, we can continue on it. He focuses on treating the child rather than the test results and doesn't think we'll need another EEG if we believe she seems more stable! Big sigh of relief on that one--no more 3:00 am mornings any time soon. The only bad news is that she will need to have her blood work done every few months--not too bad.
When we arrived home she was exhausted and spent the early part of the afternoon in our bed. The one time she got out of our bed, she went to her own and threw up all over it! I called Day Surgery and this is normal after sedation and it was the only time it's happened since we've been home (I have to say that honestly, I was more upset that I changed her sheets LAST NIGHT than that she got sick). The rest of the day has gone well. Her energy is back up, she just took her evening dose of medicine and tomorrow she's back to Pre-School and I'm back to work...and in just three weeks she's off to Kindergarten. I don't think this could have been done with better timing. She should stop having seizures just in time to start Elementary School :)
Wednesday, August 1, 2012
Holding My Breath
Tomorrow is the big reveal. We'll be awake at 5:45 am to get Soph her medicine before she becomes NPO at 6:00, then we arrive at the hospital at 6:30 am. The plan is register, go to day surgery for the anesthesia prep, then to Radiology for the MRI which is at 8:00 am. After that she'll go to recovery while coming out of the anesthesia which they expect to be around 11:00 am. Once she's cleared to leave we go up to the doctor's office and meet with him to figure out our plan. The Radiology department told me today when the confirmed the appointment that it's doubtful the MRI will be read by the Radiologist by the time we get up to the doctor's office, so that's a big let down. I'm hopeful though that when it's all said and done and we leave the hospital, we'll have a much better understanding of what's happening and what lies ahead.
I'm holding my breath and trying not to worry--I know my energy is better used elsewhere.
On a side note, it was comforting today to receive a great outpouring of love at work. Many of the staff members at the hospital had heard what's going on and they asked how things were going. We're being held in prayer by many people. Thank you if you are one of them. In my job, I know that prayer works, and I appreciate each one going out for her. Please think of us often tomorrow and keep sending the prayers. I will try to update this at the end of the day.
I'm holding my breath and trying not to worry--I know my energy is better used elsewhere.
On a side note, it was comforting today to receive a great outpouring of love at work. Many of the staff members at the hospital had heard what's going on and they asked how things were going. We're being held in prayer by many people. Thank you if you are one of them. In my job, I know that prayer works, and I appreciate each one going out for her. Please think of us often tomorrow and keep sending the prayers. I will try to update this at the end of the day.
Subscribe to:
Comments (Atom)