Amazing Grace

I forgot to mention yesterday that Kevin and I were able to get out last night and go see Chris Tomlin.... because Suzanne decided that she would share her mom with us. Thank you Suz.

Home Sweet Home

We have been home for almost a week now. Grace's medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace's epileptologist and she will have an EEG while we are there.

The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!

Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!

There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....

I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.

Joy

Day 10 in St. Paul

Grace is doing incredibly well! She is more awake and alert, and has been sitting up being supported or in her therapy chair off and on for about an hour total so far today. Grace is off of the Iv antibiotic and going to an oral version that she will be on the next 8 to 10 days.

We are going to increase her Febeltol today and add a vitamin(?) that will protect her liver that can be harmed by being on the Depakote.

Labs are all looking good.

Three days without a seizure!

Should go home on Sunday!

Day 9.75 in St. Paul

Today went well for Grace. No seizures all today, so the Febetol must be doing something. Granted this could also be the honeymoon affect that we have experienced on many other meds.

Grace had no Tylenol today and she does not appear to be in pain, she was awake a great deal more and sitting up well and holding her head up really well.

We are completely off of Topamax now the really bitter tasting medicine that Grace was taking.

Dr. Doescher really wants to "clean" Grace up with the number of meds she is currently on, I would suspect by the time we return (if we need to return) to start the ketogenic diet that she will be on only two or three anticonvulsants and maybe Prilosec, we may even be able to eliminate that one as well. Who knows time will only tell?

Most likely looking at being discharged by Sunday.

Day 9 in St. Paul

Grace slept pretty well last night this is the first night since mid August that she has not been fed overnight. She woke up around 4am and took a couple ounces.

Her blood cultures are still not quite right, they want to make sure any infection is knocked out before discharging her. Dr. Strafford who did the surgery and is handling the followup believes that we should be able to be able to go home Saturday, Sunday, or Monday.

Day 8 in St. Paul

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.

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.

Photos of Grace & Hoover

Our photos are online. Click Here to see them, when the page load click on Kevin..., grace is the password.

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.

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.

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.

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.

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.

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.

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.

Sleeping with a Blue Monkey Thing