Grace's fever broke last night, our Epileptologist spoke with our Endocrinologist in Des Moines this morning and they decided to keep her at the triple dose of Hydro-cortisone for the day and possibly the next day, she will have no problem resuming the tapper of the Hydro-cortisone after we get over this little hurdle.
She has taken 2 - 4 oz bottles already today, she had a 1/3 of an ounce left in the second bottle so they put it through her tube. The idea now is to feed everything by bottle and what she does not take we tube. So if this works we will not need to run the pump at night anymore. We may need to run the pump during the day at times depending on how much she won't take by bottle; we need to shoot for an over the day amount.
They did X-rays this morning to make sure everything was OK and to help rule out any internal issues as to why she had the fever. Her white count went up last night after she got the Hydro cortisone. They are going to keep her on the Iv antibiotic and give her Tylenol and ibuprofen in rotation to keep her temp normal and to help prevent any further infection.
Thursday, October 19, 2006
Wednesday, October 18, 2006
Day 7.75 in St. Paul
Grace had a fever of 102.1, her regular Hydro-cortisone (steroid) dosage seemed to help break the temp, she's down now to 97.1. She got a sponge bath and they are going to triple her Hydro-cortisone tonight to help fight off any infection from the steroid. She is also going to go on antibiotics by Iv versus the oral ones she has been getting since the surgery now that her temp has been running high.
Day 7 in St. Paul
Grace did well overnight, she hasn't been awake all that much today on and off for 20 minutes max at a time. She took a half a ounce of pedialyte which was her first thing in her stomach in over 24 hours minus her medicine. She just finished taking a couple ounces of formula.
They gave her morphine three times to help with the pain and she is getting Tylenol every four hours by suppository.
She is on the Febetol now and her dosage is being increased each day, this drug is an anticonvulsant; we are also tapering her off of the Topamax another anticonvulsant she will be off of this medicine before we leave. Grace is also off of Carafate as of today.
The GI doctor that performed the surgery stopped by and loosened the plug on Grace's stomach a bit to help with some discomfort.
They gave her morphine three times to help with the pain and she is getting Tylenol every four hours by suppository.
She is on the Febetol now and her dosage is being increased each day, this drug is an anticonvulsant; we are also tapering her off of the Topamax another anticonvulsant she will be off of this medicine before we leave. Grace is also off of Carafate as of today.
The GI doctor that performed the surgery stopped by and loosened the plug on Grace's stomach a bit to help with some discomfort.
Photos of Grace & Hoover
Our photos are online. Click Here to see them, when the page load click on Kevin..., grace is the password.
Tuesday, October 17, 2006
Day 6 in St. Paul
The surgery to put the G-tube in went good. No complications.
She has lots of equipment hooked up to her, tubes going everywhere. She has a potassium drip, we are hoping that she will smile again, she really smiled alot after being on a drip at Blank back in August.
Her esophagitus (acid reflux) is looking much better so we are going to take her off of Carafate that was used to coat her esophagus.
We are also going to start tapering Topamax and eliminate that medication; we don't think Grace will mind. It has a real bitter taste and is the hardest to get her to take.
She has lots of equipment hooked up to her, tubes going everywhere. She has a potassium drip, we are hoping that she will smile again, she really smiled alot after being on a drip at Blank back in August.
Her esophagitus (acid reflux) is looking much better so we are going to take her off of Carafate that was used to coat her esophagus.
We are also going to start tapering Topamax and eliminate that medication; we don't think Grace will mind. It has a real bitter taste and is the hardest to get her to take.
Monday, October 16, 2006
Day 5 in St. Paul
This morning Dr. Frost wanted to start Grace on Febetol (spelling?) as she is just having too many clusters of seizures to not try and do something for them.
We just got word that we will have Grace's surgery is scheduled for 10:15am Tuesday. She will get her G-tube put in. They do not want to start the keto diet yet they first want to make sure there is nothing wrong with her tube and it gets healed up before heavy use. We will be here until at least Friday will probably head home on Saturday.
We just got word that we will have Grace's surgery is scheduled for 10:15am Tuesday. She will get her G-tube put in. They do not want to start the keto diet yet they first want to make sure there is nothing wrong with her tube and it gets healed up before heavy use. We will be here until at least Friday will probably head home on Saturday.
Day 4.5 in St. Paul
No Day 4 entry, Sunday was pretty uneventful. We are back at the hospital early this morning as we didn't want to miss any of the doctors doing their rounds. Grace got a roommate in the middle of the night. Shared rooms are the only real downfall of being here at Children's. It's too bad they don't have more space or less clients so this would not ever be an issue. They are pretty land locked plus the building would not be an easy one to add onto do to it's design.
Saturday, October 14, 2006
Day 3 in St. Paul
Yesterday we seemed to just wait around. But mid-afternoon the doctor that was doing rounds came to visit us. He is an epileptologist with the same group but with an adult specialty. He was very nice and easy to work with; hopefully he will be with the Minnesota group for a long while so we can work with him down the road.
We made the decision that we will go with the Ketogenic Diet, we found out that we have an appointment on Monday with the keto dietician. There was some confusion as to if we can start the keto diet right away after Grace gets her G-tube, looks like the timing is not a big issue we can start the keto diet with the NG-tube. So we will need to discuss the scheduling with the GI doctor also on Monday. He has trying to contact our GI in Des Moines on Friday but they were not able to connect. It will probably be Tuesday (at the earliest) before they schedule her in.
The G-tube procedure puts the tube down her throat and pushes out through her stomach wall and through the skin, then there is some sort of plug that we will be able to open up to feed her. The big reason for needing this tube for the diet is that since her feedings are specially calculated she needs to eat everything that we will give her. So if she won't take it by bottle we give it to her by tube. Even later on when she starts eating real food she will need to eat everything given to remain in the state of ketosis.
We made the decision that we will go with the Ketogenic Diet, we found out that we have an appointment on Monday with the keto dietician. There was some confusion as to if we can start the keto diet right away after Grace gets her G-tube, looks like the timing is not a big issue we can start the keto diet with the NG-tube. So we will need to discuss the scheduling with the GI doctor also on Monday. He has trying to contact our GI in Des Moines on Friday but they were not able to connect. It will probably be Tuesday (at the earliest) before they schedule her in.
The G-tube procedure puts the tube down her throat and pushes out through her stomach wall and through the skin, then there is some sort of plug that we will be able to open up to feed her. The big reason for needing this tube for the diet is that since her feedings are specially calculated she needs to eat everything that we will give her. So if she won't take it by bottle we give it to her by tube. Even later on when she starts eating real food she will need to eat everything given to remain in the state of ketosis.
Friday, October 13, 2006
Day 2 in St. Paul
We read up on the Ketogenic Diet and also got our hands on a book put out from John Hopkins that is said to be the reference book when it come to Ketogenic Diet.
Met with a GI doctor today, he would like to see Grace get a G-tube put in independently if we go on the Ketogenic Diet or not. He said the max his practice has is 6 weeks on an NG tube. Having a NG tube can also reduce her appetite since there is a tube constantly running through her esophagus.
We were suppose to meet with the keto dietician but she did not show up even after several pages. We originally though there was a keto program in Iowa City but there is not and St. Paul is the closest and having the doctors and dietician essentially in the same hospital will make it easier to get answers.
Looks like we may have to wait until Monday to get any more answers.
Found a Carter's Store tonight, got Grace some warm clothes and a wind up musical giraffe. Plays the same song my old wind up Koala played.
Met with a GI doctor today, he would like to see Grace get a G-tube put in independently if we go on the Ketogenic Diet or not. He said the max his practice has is 6 weeks on an NG tube. Having a NG tube can also reduce her appetite since there is a tube constantly running through her esophagus.
We were suppose to meet with the keto dietician but she did not show up even after several pages. We originally though there was a keto program in Iowa City but there is not and St. Paul is the closest and having the doctors and dietician essentially in the same hospital will make it easier to get answers.
Looks like we may have to wait until Monday to get any more answers.
Found a Carter's Store tonight, got Grace some warm clothes and a wind up musical giraffe. Plays the same song my old wind up Koala played.
Day 1 in St. Paul
We traveled up to Fairbault, MN on Wednesday night. We were constrained for time with Grace's medication/feeding schedule (mostly overnight feedings though her feeding tube) so we decided to spilt the trip up and make our Thursday morning drive short. We arrived at Children's Hospital in St. Paul and saw Dr. Frost, one of the Epileptologists from the Minnesota Epilepsy Group. There are some additional drug therapies that we can try, I can't remember the exact names right now and probably couldn't spell them if I tried.
Wednesday was the last day of Keppra; they checked her dosages of Keppra while she was on it and we may have been in the therapeutic range it is pushed significantly higher and does have some results, we may go back to Keppra in the future if other treatments don't work.
There is one drug that has not been approved by the FDA as of yet, possibly might be approved next year. It is the preferred treatment in Europe over ACTH which was the steroid we tried originally. The drug I believe is called Vigabitrin, and is not a steroid; currently it is available in Canada by prescription or over the counter in Mexico and very very pricey.
Another option that may be an option is the Ketogenic Diet. The diet is a very very very strict diet that consists of about 90% fat. It would be easier to try it now versus later as she gets older as we would be formula based to start plus since she hasn't started food she essentially would not know any different. This treatment has been around for at least 80 years, instead of providing glucose for energy the body gains it's energy by burning fat. The diet is similar to Atkins but much more strict, virtually no carbs and the slightest deviation from the diet could could completely negate everything in the past. Needless to say Chocolate Chip Cookies would not be in Grace's future.
If we decided to try the Ketogenic Diet, Grace would have to have a G-tube put in; she currently has a NG-tube through her nose this would be a tube surgically put into her stomach and I believe a port would be in her belly. We would have to commit to try this for 3 months and if it worked we would be on it for apx the next 2 to 5 years. The benefits of this are that the diet can actually change the way the brain functions and could make Grace seizure free in the future or at least reduced even when she goes off of it. She would also be able to continue on drug therapies and once we reach a point in which seizures are stopping we would then reduce levels of the medicines to determine in the drugs or the diet are working or if it's a combination of the two. This would be a "natural" treatment option which is intriguing. We would be in close consultation with a Ketogenic Dietician here at Children's and working with an Epileptologist. We are going to meet with the dietician again today and most likely a GI specialist; if we go forward we would have to be in the hospital for a minimum of 5 days after the tube in put in. We will post more when we know more.
Wednesday was the last day of Keppra; they checked her dosages of Keppra while she was on it and we may have been in the therapeutic range it is pushed significantly higher and does have some results, we may go back to Keppra in the future if other treatments don't work.
There is one drug that has not been approved by the FDA as of yet, possibly might be approved next year. It is the preferred treatment in Europe over ACTH which was the steroid we tried originally. The drug I believe is called Vigabitrin, and is not a steroid; currently it is available in Canada by prescription or over the counter in Mexico and very very pricey.
Another option that may be an option is the Ketogenic Diet. The diet is a very very very strict diet that consists of about 90% fat. It would be easier to try it now versus later as she gets older as we would be formula based to start plus since she hasn't started food she essentially would not know any different. This treatment has been around for at least 80 years, instead of providing glucose for energy the body gains it's energy by burning fat. The diet is similar to Atkins but much more strict, virtually no carbs and the slightest deviation from the diet could could completely negate everything in the past. Needless to say Chocolate Chip Cookies would not be in Grace's future.
If we decided to try the Ketogenic Diet, Grace would have to have a G-tube put in; she currently has a NG-tube through her nose this would be a tube surgically put into her stomach and I believe a port would be in her belly. We would have to commit to try this for 3 months and if it worked we would be on it for apx the next 2 to 5 years. The benefits of this are that the diet can actually change the way the brain functions and could make Grace seizure free in the future or at least reduced even when she goes off of it. She would also be able to continue on drug therapies and once we reach a point in which seizures are stopping we would then reduce levels of the medicines to determine in the drugs or the diet are working or if it's a combination of the two. This would be a "natural" treatment option which is intriguing. We would be in close consultation with a Ketogenic Dietician here at Children's and working with an Epileptologist. We are going to meet with the dietician again today and most likely a GI specialist; if we go forward we would have to be in the hospital for a minimum of 5 days after the tube in put in. We will post more when we know more.
Wednesday, October 11, 2006
Sitting Up
This is a special chair that is helping with Grace's Head Control and body strength. She could only do about 3 minutes at a time when she started now we are up to 10!
Back to St. Paul
We went to see our Neurologist a week and a half ago and he told us there was nothing more that he could do for Grace and that she need to see an Epileptologist. We went into the appointment and the last wanting him to contact Dr. Ritter at Children's Hospital in St. Paul who we saw back in June but that never materialized. So we called Ritter and they wanted to see us, first they need to be updated on what had been tried, they figured we would be able to get in around November as the hospital was in the middle of a major computer upgrade but last Friday at around 4pm they called and they want to see Grace Thursday morning to be admitted. So we are heading up, we don't know really what will transpire just that this is the next step.
We are down to .2ml of Hydro-cortisone the steroid we switched to after the ACTH really messed Grace up, we are giving this to her twice a day and will continue until next Friday when we will drop to .1ml twice a day for two weeks after that the current plan is she will be off of it and then 4 weeks later Grace's immune system should be back up! They we can rejoin the wonderful world of daycare!
We are taking Grace off of Keppra one of the anticonvulsant drugs she is on, there was no evidence that it was working for her we will give her the last dose on Thursday morning.
We will try and put updates out here while we are in St. Paul.
We are down to .2ml of Hydro-cortisone the steroid we switched to after the ACTH really messed Grace up, we are giving this to her twice a day and will continue until next Friday when we will drop to .1ml twice a day for two weeks after that the current plan is she will be off of it and then 4 weeks later Grace's immune system should be back up! They we can rejoin the wonderful world of daycare!
We are taking Grace off of Keppra one of the anticonvulsant drugs she is on, there was no evidence that it was working for her we will give her the last dose on Thursday morning.
We will try and put updates out here while we are in St. Paul.
Tuesday, September 26, 2006
Running on Empty is not just a Jackson Browne song
To All:
Grace will be eight months old on Thursday. It's officially hard to imagine life without her. We can't remember what we used to do, although I'm sure Hoover remembers that he used to get more attention! I wanted to let you all know how Grace is doing and ask that you continue to keep our family in your prayers.
Kevin and I feel we have survived the crash course in epilepsy and are now beginning to figure out what it is we need to do next. Grace is currently on four anti-convulsant medications (as well as a cadre of other drugs) and we are considering taking her back to the epilepsy center in St. Paul we were sent to upon her initial diagnosis in June. We meet with her neurologist here on Thursday and hope that he will be agreeable to helping us with this step. We worry about burning our bridges with him, but he's seen two other infants with Grace's diagnosis, the group in St. Paul has seen far more. And if we actually do burn our bridges I guess he wasn't the neurologist for us in the first place.
Since her website was last updated Grace has gained several other doctors and a feeding tube. All of this results in an incredibly busy schedule and though I for one have never been amazing at being organized... I have had to kick it in to high gear. We also have a home health nurse, a physical therapist, two occupational therapists, and a teacher to schedule into our days. All of them are greatly impressed with Grace's progress as of late. We are still really behind, but we are able to see that she is learning and growing physically stronger everyday. Because of the medication her immune system is still comprimised and my father is now living with us three days a week to take care of Grace. Everyone at work tends to ask how my dad is hanging in there, before they ask about Grace. They think its amazing he is willing to help, and we think it is too, we couldn't do this without him.
Work has been busy, but my co-workers have been very supportive of my need to duck in and out of the office because of various doctor's appointments and understand that when the neurologist calls and asks to speak with me I need to leave what I am doing to go and talk with him. Because of Grace's immune system we mostly hang out at home, and in the back yard if its nice. Kevin and I got the opportunity to go to Target together last weekend (thank you Mom!) and that was just wonderful. We had so much fun!
Kevin's co-workers have been amazing as well. He isn't looking forward to the holiday season however because it will be such a busy time. There are of course many things to do, and when only one of us is here Grace takes front and center stage... the rest just has to wait.
I have done a lousy job of keeping you all informed of our lives, and hope to do a better job reaching out to you to share our story. I won't pretend it isn't hard, or we don't have bad days.... but we also have wonderful moments, a beautiful daughter, lots to look forward to, stories to read, and the sound of baby sleeping noises in our baby monitor at night - ultimately we have been blessed.
Love - Joy
Grace will be eight months old on Thursday. It's officially hard to imagine life without her. We can't remember what we used to do, although I'm sure Hoover remembers that he used to get more attention! I wanted to let you all know how Grace is doing and ask that you continue to keep our family in your prayers.
Kevin and I feel we have survived the crash course in epilepsy and are now beginning to figure out what it is we need to do next. Grace is currently on four anti-convulsant medications (as well as a cadre of other drugs) and we are considering taking her back to the epilepsy center in St. Paul we were sent to upon her initial diagnosis in June. We meet with her neurologist here on Thursday and hope that he will be agreeable to helping us with this step. We worry about burning our bridges with him, but he's seen two other infants with Grace's diagnosis, the group in St. Paul has seen far more. And if we actually do burn our bridges I guess he wasn't the neurologist for us in the first place.
Since her website was last updated Grace has gained several other doctors and a feeding tube. All of this results in an incredibly busy schedule and though I for one have never been amazing at being organized... I have had to kick it in to high gear. We also have a home health nurse, a physical therapist, two occupational therapists, and a teacher to schedule into our days. All of them are greatly impressed with Grace's progress as of late. We are still really behind, but we are able to see that she is learning and growing physically stronger everyday. Because of the medication her immune system is still comprimised and my father is now living with us three days a week to take care of Grace. Everyone at work tends to ask how my dad is hanging in there, before they ask about Grace. They think its amazing he is willing to help, and we think it is too, we couldn't do this without him.
Work has been busy, but my co-workers have been very supportive of my need to duck in and out of the office because of various doctor's appointments and understand that when the neurologist calls and asks to speak with me I need to leave what I am doing to go and talk with him. Because of Grace's immune system we mostly hang out at home, and in the back yard if its nice. Kevin and I got the opportunity to go to Target together last weekend (thank you Mom!) and that was just wonderful. We had so much fun!
Kevin's co-workers have been amazing as well. He isn't looking forward to the holiday season however because it will be such a busy time. There are of course many things to do, and when only one of us is here Grace takes front and center stage... the rest just has to wait.
I have done a lousy job of keeping you all informed of our lives, and hope to do a better job reaching out to you to share our story. I won't pretend it isn't hard, or we don't have bad days.... but we also have wonderful moments, a beautiful daughter, lots to look forward to, stories to read, and the sound of baby sleeping noises in our baby monitor at night - ultimately we have been blessed.
Love - Joy
Thursday, July 27, 2006
Left Side, Right Side
Grace started using her right arm and reaching out towards a hanging object while in her swing today. She is batting at objects with both arms! She was just starting to do this before all of this started. Part of the loss of this skill was most likely do to a set back from the seizures and the other from the medication she is on. Now if she would only smile.
Tuesday, July 25, 2006
Decrease Medication
Today we drop Grace's ACTH down to .25ml the original dosage we started her at. We are also going to decrease the clonzapam, as her head and body control are getting significantly worse, the clonzapam is a muscle relaxer so we are hoping that this help.
Tuesday, July 18, 2006
Back to the Pediatrician
We went back to the pediatrician's office today, this time to meet with our regular pediatrician. We seemed to get things worked out and more of a straight answer as to what was going on with the diagnosis of Grace having thrush and then not having thrush. It was a relief to speak to Dr. Fornoff; we tried to assure him that we were not trying to be difficult it's just really tough when two doctors are angry at each other and we are getting thrown around between them. We just want the best care for her and we can't seem to do that when ego's get in the way. It's not like we enjoy spending half of our awake time in various doctor offices or hospitals.
Monday, July 17, 2006
OT Visit
Today we had Grace's Occupational Therapy. We are trying to develop the use of her right side, she greatly prefers her left side. We are working on things like rolling over and gripping objects. Grace was starting to grasp objects before all of this started but she has lost the ability. Right now at almost six months she she around the development of a two and a half month old. We have been working on things for the past few weeks. We started to see some significant changes in the last couple days she is starting to tract objects much better and grabbing a hold of light objects. She even rolled over today to her back, granted she was a little annoyed to be on her front so that probably helped.
We tried to feed Grace some rice cereal with a spoon, she did really well for our first attempt. We need to get her eating by a spoon because if the drug Keppra she is on does not work we will be switching to Topamax which comes in little sprinkles that we will need to feed her on top of applesauce or rice cereal.
We tried to feed Grace some rice cereal with a spoon, she did really well for our first attempt. We need to get her eating by a spoon because if the drug Keppra she is on does not work we will be switching to Topamax which comes in little sprinkles that we will need to feed her on top of applesauce or rice cereal.
Sunday, July 16, 2006
Night Out
Nancy came to watch Grace tonight for a couple hours so Joy and I could get away. Nancy took care of grace at daycare before all of this started.
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