Saturday, April 30, 2011

All The Rage

No, I'm not talking about fascinators, or the royal wedding (though it was nice of them to consider me when planning their wedding date)...I mean Keppra rage.

Speaking of of my besties, Erin, made me a lovely one for my birthday/wedding watching. She's great!

It's hard for me to notice subtle changes in Cole, like how tall he is, his sentence structure improving, etc. I am in it every day all day and just have to go with the flow. It's the people who have time away that notice the change from point A to point B. When you are there for the in between stuff, it is a little harder to recognize the difference.

I know that Cole has been more violent lately, but there is also a lot of other things that have been going on. Only recently, did my brain kick in and say, "HELLO, Niki! He's acted like this before". My theory is that being off of the diet has made him process his meds differently and he is becoming toxic on Keppra again. At least that is what I am telling myself today. I need an answer for the little troll I've been dealing with lately.

His tests came back negative for diabetes insipidous, but I am not convinced since the samples could have been tainted. Yes, more talk of samples and bodily fluids...really, it's our life right now. There has still been the copious amounts of urine and multiple loads of laundry. Who knew taking him off of fat could have so many repercussions? Hopefully things calm down soon, since we are heading to Miami. The insurance has approved it! It will still take quite a chunk of money, but it is worth it. We are willing to do anything, take him anywhere. Even when he acts like a troll sometimes.

Thursday, April 28, 2011


The Easter bunny lost our new address and did not make it this year. All of the colors, candy and excitement were too much. We went through the entire weekend without eggs hunts, Easter grass, jellybeans or a single Cabbury egg.

However, Easter morning dawned and after attempting a family picture, we ventured out together to church. We had a couple of liberating experiences in the days past, why not? The tag team version of church attendance is getting old ;)The second we entered the building, the seizures started. We sat down, and made it through the opening song, but by then it had generalized. I just need to find out what it is about this building. The light? The temperature? WHAT IS IT?!!

Oh, well. We tried! I think we'll still get points ;)

Later that day, Cole tried his hand at dyeing eggs.He really just enjoyed stirring the multiple ramekins.We had dinner and enjoyed our own version of Easter festivities. The day was focused on the true meaning of the holiday. Although I miss all of the fun activities associated with Easter, and the only time of year in this country when it is acceptable to have everyone wearing hats (the British know what they are doing!), I was glad to have a little break and focus on what matters most.

Wednesday, April 27, 2011

Anyone Know Where I Can Find A Band Of Gypsies?

Appearances can be deceiving...They would send him back.

Saturday, April 23, 2011

The Big Top

The next day after the in-store seizure was a roller coaster, or maybe I should say circus. I felt like a ringmaster, trying to weave a coherent theme between all of the chaos. One minute Cole was a clown, the next a ferocious tiger attacking his trainer. Lots of hitting, kicking, spitting, pinching, screaming, crying, yelling, and so on. He even started to bend my fingernails backwards. What?! An hour later, he would be pretending to take my order for chocolate cake. Then he would become a super-sensitive-needy diva that wanted to be held constantly, forcing me bend to his will like a contortionist. Instead of a constantly revolving sideshow, maybe it was more like Jekyll and Hyde?

Regardless of the terrible day, I was moving forward with plans to see the actual circus. I've mentioned before that he has not had back to back tonic clonics without illness for a while. So, why not take our chances? We could always leave.

Cole has NEVER been in a place with that many people before. The lights, the noise, everything was overstimulating. He had to take multiple breaks and wander outside from the chaos, but the biggest incident did not include any rescue medication, just an extra pair of pants I had thankfully thrown into the bag. We did bring the oxygen in with us this time ;)This was not the circus of my youth with one ring in a small tent erected on the county fairgrounds and sawdust on the floor. It was a full on production. Screens, fireworks, smoke, songs and was more like a Disney show.He loved it! He woke up the next morning and the first thing he asked was, "We go to circus?"He roamed from seat to seat, but liked sitting in the middle of the aisle best. He has been swinging the sword around constantly since ;)I'm going to admit that I cried during the opening number, because we were doing something that I had before thought was impossible. I've turned into such a sap. I am so glad that we took the chance and went.Cole's favorite part was the elephants.As we went back out into the rainy night, Cole proclaimed, 'That was fun!" then said, "I loves elephants!" Back to our own three rings of disarray. Who knows what we will try next?

Friday, April 22, 2011

Press Forward

Mixed reviews on the last post. It wasn't necessarily a cry for help. I just have been reflecting on how different I am from the person I once was. It doesn't mean that I haven't embraced this life, it's just different. I used to be clean, social, etc, etc.There has been a paradigm shift and my priorities are not the same now. Having an organized house, perfect yard and dinner parties doesn't happen at this time. Doesn't mean that it won't happen again, just not right now. Things are always changing ;) Right now what is important is taking the best care of Cole as possible.

My sisters spontaneously showed up this week to surprise my dad for his birthday. That would have been awesome to be a part of. It just couldn't happen. I'm already organizing things for October's travel. Spontaneous things, while fun and exciting, are a thing of the past. At least spontaneous things that require airplanes.

However, we can still try our hardest to inject some fun into our little world. It may not work, but at least we have to press forward and try. Cole had his first seizure in public this week where we did not go home immediately afterwards. I needed a rockin' dress for Easter/family wedding/turning 29 again. I hate shopping for dresses alone and Brian actually likes to shop with me. Plus, he likes to buy me shoes. A couple little bonuses! ;) We decided to be brave and hit up an outlet mall that is about 25 minutes away. I was so ready to get out of the house and Cole seemed excited. Of course, when we were gathering things to leave, he asked if we were going to see the doctor.

Cole started seizing about 20 minutes into the hunt. Brian ran into the ladies dressing room and knocked on my door, telling me that he needed my help. It's a good thing I was dressed, just not in my clothes. We laid Cole on the ground in the corner, in the midst of displays of shorts and sweaters, and gave him Diastat. Brian ran like crazy to the car to get the oxygen because his sats were 54. It was hard and fast. Probably about 5 minutes total, but a complete unconscious tonic clonic. A sweet salesperson was concerned and tried to be helpful. I was, after all, kneeling on the ground in a silk ikat number that I had not paid for ;) Cole perked up quick and Bri headed out to the car with him after he reassured me that he could handle it and to just come when I could. I told him I would just buy what I had on and would meet him out there. I ran back to the dressing room, changed and got in line. To my surprise, he came back in as I was paying, informing me that Cole had requested he, "Go find Momma" and wanted to walk. I got my stuff, and told everyone we were leaving. Cole decided that he wanted to play in the cool car strollers they had available and Brian told me that we might as well take advantage of the shops while we were there. So, we stayed for 45 more minutes (and got some killer snakeskin heels). The entire time I was asking Cole how he was doing, but a little Valium would make anyone feel better. It was surreal, but we proved to ourselves that we can have a traumatic seizure in public and move on through it, together. Now, I'm not saying that we are ready to go to a theme park or anything, but it was a big moment for us as a little family.

*Aren't you proud? A whole post without a single mention of bodily fluids! I can't promise anything for the future ones ;)*

Thursday, April 21, 2011


Keeping it real around here.

The "take it a day at a time" (sometimes minute at a time) attitude that has been present this week has produced results such as:

Thisand this
and this
No, these are not pictures taken from a Hoarders episode. This is the kind of stuff that has fallen by the wayside. Old laundry-that really is clean, or at least it used to be two days ago when it was put in that chair with the intention of being folded immediately. I'm telling myself because I have the world's smallest kitchen sink, it just fills up faster. Never mind the quilt that is drying on the dining room chairs.

Old Niki would have started hyperventilating and had her right eye twitching if she was living in something like this. She would have stayed up all night scrubbing, even though she was exhausted. Old, clean, organized Niki is gone. I guess she's still old, but not clean and organized anymore.

I'm not going to lie. This week has been tough. Emotionally, physically, all the "ly's". Two hospital trips is two weeks has not happened in almost a year. Cole is kind of on the mend, but more demanding than ever. My body has decided to shut down and declare war. I'm not eating or drinking or sleeping enough, so it's decided to give me a kidney stone as a present for my efforts. On Tuesday, I had that old, familiar feeling of being stabbed in the back and muscle spasms up and down my sides. Can't sit, can't stand, can't really do anything but lay curled up. Tell Cole that. He's not the restful type, or at least the NON-pestering-needs-all-of-my-attention-all-of-the-time type. I have been relinquishing all responsibility once Brian hits the door, and all three of us end up purely exhausted once night falls.

Cole's new diet seems to be having benefits. He is slowly getting back on track with his digestive system. Oh, the formula that the doctor wanted us to put him's only available online and it costs $409.00 for shipping. WHAT?!!! Someone out there knows that they have a narrow consumer market and is making bank. A $80 case of formula costs more than triple the amount to ship? We decided to search out something local and of all things, we found Hemp milk. No, we are not starting our child on medical marijuana. This was the only non-diary, no sugar, low carb option we could find readily available. It's close to soy. He likes it and it has made meal times a little easier. He is still having a lot of smaller seizures. When the doctor asks me how many, I have to be honest and say I don't know. It is so sad that we don't record anything under 5 minutes.

He has also decided to wake up in the middle of the night every night this week, totally wired even though he has not had rescue medication and stays up for hours. This in turn, keeps Brian and I awake for hours. So, when nap time rolls around, I try to catch a few winks instead of being productive and doing mundane things like cleaning the kitchen or folding laundry. I should be sleeping now, but a few of you have inquired after our welfare, so I thought I would make an update. Thanks by the way. It's nice to know that we couldn't just slip off into oblivion unnoticed :)

My favorite answer to one of our dear friends when he asks me how I'm doing (and it's not going great) is, "I'm vertical." It's code for I am up, and dressed and semi-clean. I'm not curled up in bed with a pillow over my head trying to block out my reality. Although sometimes it is tempting to hang out in depressing darkness, it never really accomplishes anything. I'm taking care of immediate needs, but other stuff like laundry and dishes are just so not important right now. Instead of forcing Brian to mow the lawn tonight, since we look like we have started a jungle preserve, I am suggesting that we bust out of this joint and go to the circus. It's set up just down the road. Go mingle with our fellow clowns and death-defying stuntmen. Why not? The grass will still be here tomorrow.

Sunday, April 17, 2011

Captain Complicated

We went back to the Emergency Room today. It's a good thing we were having a Dravet family over for dinner tonight, they totally understood our need to cancel an hour before! Cole has been a bit "off" lately, and just can't seem to bounce back from his previous illness. He is drinking like he is storing up for a two year supply and having copious amounts of urine. I have lost count of how many complete outfits I have changed, sheets I have laundered, puddles I have cleaned up off of the floor and how many times I have scrubbed the couch. His blood sugar has been low, although I have only checked it a couple of times at home. Each time I come towards him with the lancet, he gets more agitated...which equals more seizures. I can just tell most of the time.

The yo-yo diet he has been on this week has not helped. At the beginning of the week, he was doing splendid off of the regimented, intense diet that has dictated his life for almost a year. There wasn't enough increased seizure activity to worry. We decided to just do the Modified Atkins Diet to hopefully get some of the benefits of keto, but not put as much stress on his liver, as we are certain that Depakote is in our future. Our neuro agreed, he is not a real fan of the diet anyway. He was shocked when I told him that it eliminated his drop seizures. Brian was ready to smash the scale! It has been nice not having to weigh every thing. As the week progressed, he started having lots of mucous in his stool and more seizures. Okay, maybe we shouldn't go off of the diet. So, we decided to go back on...kind of. We saw the pediatrician the next day to talk about some of the things that were happening, and he thought Cole's intestines were fighting back, because they are not fully healed after taking a beating with his gastroenteritis. I don't blame them, they have had a rough couple of weeks ;) The doctor suggested we eliminate all dairy, fruit, simple sugars and carbs from his diet. Um, okay? When we were "off" of the diet, he was having some carbs and fruit. When we were "on" he was having fruit and dairy. Sugar wasn't really a problem, but basically all we had left was protein. So, for two days, all Cole ate was eggs and meat...and cried a lot. This also caused him to go back to having diarrhea. Apparently, his insides were not too happy about that either. The doc wanted stool and urine samples, but it was the end of the day and Cole was not cooperating. The next day, we spent 6 hours going to see the g-tube specialist (he needs a new size tube because he has lost so much weight) and he decided to not be cooperative with the samples then either...I swear he does it on purpose sometimes! Then we were to Saturday and just said we would try again on Monday.

So today he was lethargic in the morning, and even fell asleep in my lap. That just doesn't happen. He continued with the signs of low blood sugar and had the excessive peeing problems. 4 complete outfits in 2 hours, oy! After the constant jerking, we decided we might as well go in and get his labs checked today, instead of trying to get them tomorrow outpatient and not getting the results until Tues. We were worried about a UTI, or some sort of bacterial infection. We packed a bag and headed out, to the hospital that is nearby this time. I was impressed! They totally get an A from me! On a Sunday, we were shown to a room within 10 minutes and got multiple tests done in a couple of hours. The doctors and nurses were attentive to what we were saying and took our suggestions. Plus, it was cleaner than the other hospital! The Child Life specialist came in with toys in the first 20 minutes and was there to help with the catheter (never fun). I am certain we will be back. Plus, they have valet and WiFi; bonus!

We called the dietitian back in UT and get this, she answered! She suggested that we give him keto foods, just not in weighed out portions.

After all was said and done, there was not a lot they could do for us. We know that his chemistry's came back pretty normal. He has 80+ ketones again, after he was totally negative 2 days ago. He had a full abdominal ultrasound, checking his liver, spleen, pancreas and kidneys-all normal. His UA came back without signs of infection. He doesn't have a fever. We just have to wait for the results of the stool culture. The on-call neuro suggested that he go up on his Keppra to 500 mg twice a day. I just nodded my head and did not even get into Keppra rage or all of the up/downs we have had with his levels. We are not going to bring back Angry Elf again if we can help it! His blood sugar was 50, but he was up and roaming the halls, doing what he does best...chatting up the hospital staff. Brian saw our nurse pointing to him and whispering to others that his blood sugar was 50. Mini Hulk strikes again! ;) My strong little boy.

*Cole has a kidney stone that didn't show up on ultrasound
*A bacterial infection that is hanging out in his intestines
*When it rains it pours
*With his poor body awareness, he doesn't understand being hungry. He could be hungry and just wants to drink all of the time, knowing that it makes him feel better. He has always wanted "juice" for comfort, and it is also making him feel full. Thus, all of the drinking-because he just doesn't feel good.
*He is just trying to get us to go to Miami sooner
*He is having pre-stage diabetes
*He is moving into another stage of Dravet and is just having more seizures, because he is having more seizures
*Someone far away did something to someone else and karma got re-directed towards Cole
*His body is just freaking out because it is off of the diet and wants to be burning fat again
*The phase of the moon
*The Jazz just went downhill, so Cole is going downhill too

Some of these are far fetched, but really it is kind of what they said to us. I just love it when they say he's complicated. Yeah, thank you Captain Obvious! The message was, We don't know what is going on, but something seems to be going on. Good luck finding out what it is.

So, now we are home chillin' on the couch and watching Caillou. Thank goodness for DVR. Cole has his head on my shoulder and is nursing a sippy cup full of water. We'll see the pediatrician again to get the lab results and see what he thinks. I guess we'll just start playing detective again tomorrow. It seems like no one can give us a straight answer. I just want him to feel better.

*Sorry for all of the mentions of bodily fluids, etc. I use the blog as a medical record sometimes and come back often to see patterns.*

Saturday, April 16, 2011

The Middle

It just takes some time
Little girl, you're in the middle of the ride
Everything, everything will be just fine
Everything, everything will be alright, alright

Jimmy Eat World

Sometimes it is hard to forget that you are in the middle of the ride. Occasionally, you want to yell at the operator and tell Him that you want to get off-because you are ready to pass out. The daring twists and turns and constant ups and downs are making your head feel more than a little funny, and you just want your feet on solid ground for a little bit before jumping back on. Alas, there is no break from this reality.

This week has been full of soaring heights, loop de loops and daring drops. The ride has been wild.

*Multiple seizures-3 GTCs, lots of smaller ones
*Deciding to come off of the diet completely
*A trip outside
*Time with family
*Deciding to go back on the diet because of increased seizure activity
*Re-entry of major behavior issues. New favorite-breaking things to get attention
*My sweet psuedo-niece was born without complications
*Three doctors visits (one that took 6 hours)
*Made appointments with Medicaid waiver workers
*Chocolate cake
*Got our tickets to Miami
*Reality setting in that we are going to have to switch/add meds
*Changed all of the school evals
*Being told that Cole's insides are rebelling so he had to go on an even stricter diet than keto in order to heal (this has been fun)
*Cole saying some of his funniest stuff yet
*The heavy duty pulse oximeter coming
*I survived downtown DC's roundabouts, by myself!
*Me getting to look forward to a short and sweet trip home for my birthday/family wedding
*Having to collect "samples" from Cole...he is never cooperative. Now we have to try again on Monday
*Cole having blood sugars as low as 55 (I applaud people who have children with Diabetes)
*Invasion of ants throughout the entire house
*My first birthday present arrived (FIESTAWARE! Thanks, C)
*Doing so much laundry from the blood sugar issues that I am ready to have Cole live in a plastic suit and sleep on a cot
*My realization that this sedentary lifestyle of mine has made my endurance practically nothing when it comes to physical exercise
*The purchase of a used treadmill. This is going to be a huge step for the girl who has a serious phobia of working out-too many bad experiences i.e. seizures
*Both parents got out (separately) for a few precious hours to do fun stuff like basketball and cooking club
*Cole vacillating between post ictal and Mexican jumping bean

This is just a mixed bag from the week. A bunch of other stuff happened, good and bad. The thing to remember is that we are in the middle of the ride. Sometimes, I need to just take a step back and remind myself that it is not going to be like this forever. There are some of our friends who are going through a much rougher time than us. My advice to them is this, "Hang in there! You have someone on your side!" It helps to know that you are not alone, even when you feel truly alone, and to think of the good things. I am enjoying the hilarious things Cole says. It makes me grateful that we took the chance of only keeping him on one anti-convulsant so he could develop language, instead of focusing on controlling all of his seizures. I don't want to lose this version of him. Example: I was plucking my eyebrows and he came up to me with a concerned look on his face, repeatedly asking me, "Why you picking your head?" He seemed genuinely worried. I just bust up laughing. He has never been too keen on grooming anyway ;)

Just like the song says- Everything, everything will be just fine. Everything, everything will be alright, alright.

Tuesday, April 12, 2011


Adjective: Conforming to a standard; usual, typical, or expected.
Noun: The usual, average, or typical state or condition.

The only constant in our life is change. If you are a follower of this here blog, this is not news to you. We are constantly redefining ourselves and creating a "new normal". What is expected or usual one thrown out the window the next.

Take the last 36 hours as an example.

Cole had a great day on Sunday, he stayed home from church and seemed to be turning the corner with his illness. He had been expressing desire to eat, which is huge for him. This kid has been apathetic about food from the time he was an infant. It has always been a chore to feed him. This is really the first time he has asked for specific things and wanted large amounts, consistently throughout the day. So, we were excited to welcome guests for dinner. There was family in town visiting other relatives and they all came over for a meal. Cole was thrilled to see his grandparents and cousins...too thrilled.

Our somewhat normal day turned into another normal day. Cole had a 20 minute seizure that took two rescue meds to stop. His sats were at 50% (remember 100 is normal) by the time I got the pulse ox on him. I hate it when he turns blue. UGH! This all happened right as everyone had sat down to dinner and we were starting to eat. We encouraged people to continue eating, but the silence was quite funny. No one really knows what to do in a situation like this, even if you are family and have seen it before. So, as we were attending to our seizing boy and Brian was yelling at me to get the meds, people were slowly bringing their forks to their mouth and trying to quiet my nephews. Cole stayed blind for about 45 minutes post ictal, allowing Brian to finally get some food. We made awkward jokes about arranging half-time entertainment and went about cleaning things up. He snuggled with grandpa for about 20 minutes, his vision came back and he popped up, ready to play like nothing had ever happened. He is so resilient. So, he went downstairs, played for a while and everyone left a few hours later; just like any other normal visit. Who are we kidding? We don't have normal visits! Case in point, our last visitors had to take care of themselves and leave without a farewell since we were all at the hospital.

Cole then stayed up ALL night long on a Versed high and soiled two sets of sheets on two beds. By the end of the night, I just didn't even care anymore. I was out of linens and couldn't stay up for the washing machine. All three of us were in my bed, with a towel covering the wet spot. Brian took to snoring as Cole and I just tossed and turned. Oh, how I wish I had his special powers of falling asleep instantly! Daddy went to work and Cole wanted to be up and watching television even though it was 6 am. He was demanding all of my attention and having meltdowns left and right, the early morning hours just passed in a blur of screaming and Caillou. We had a doctors appointment first thing, so when it was time, I got him ready, tried to look alive and got him loaded in the car. Oh, did I mention my car was out of gas and we were late? ;) He did surprisingly well at the doctors office, playing nice on the floor. Who cares?! There was no screaming, no running out and escaping into the hall during the exam, stealing the doctors equipment, trying to play on the computer and other things we deal with when making an office visit. I was cool with him playing on the floor! I guess the sleep deprivation was slowing him down. I had to try and convince our new neurologist that I know what I'm doing and that I don't need his approval to make decisions. The hour long appointment was draining for me, but Cole was acting like he was just fine and dandy.

I decided to take a shot and meet up with our relatives, who were going to Mt Vernon. Why not live dangerously? He had already had a major seizure the day before and we have not had back-to-back tonic clonics without illness for a really long time. The day was beautiful and I was feeling lucky. 86 degrees with a slight breeze. Cole had a great time! He did so much better than expected. He has not been outside, during the day, doing an activity since JULY of last year.I was a little nervous, to say the least. Add to that, we have been off of the diet for a week now and he really has not been outside, where the drop seizures have made their last appearance. No drops. Hallelujah! He even focused on the animals for a short period of time. He asked the cow, "Excuse me? Can you moo please?" It wasn't cooperating and acting like he thought a cow should. So funny! During lunch, he had fruit, cheese and water. All keto-friendly, but in no regulated portions. Then he decided he wanted a hamburger. What? This kid has never liked meat. He has real issues with texture. What he actually wanted was the bun. So, he took half of the top of a hamburger bun and ate it like it was candy. His first bread/gluten in well over a year. I had to restrain myself from jumping on him and prying open his jaws. I just watched him with the continuous thought of, "You can't do that! Don't eat that!" running through my head. He was fine. He was getting tired and had walked a lot, so I took him home. He slept for three hours. I fell into bed too, not even caring that I still had the previously mentioned wet spot on my sheets. Right as soon as I really fell asleep, the phone rang. It was Medicaid! She mentioned my groggy voice and asked, "Is this a bad time?" I reassured her that this phone call was important to me. I didn't want to be put at the bottom of the stack again. So, I slapped my face and cleared my throat and went through the screening phone call. Couldn't sleep after that ;) It really does seem like we will be getting services! HOORAY! Could a new normal include nurses and respite? I can't wait to find out. The relatives came back for dinner. We had a great time and there was no half-time show or circus acts. Just kind of a normal, family get-together. I took my kid outside! He ate regular food, from a food court! We had a great day. However, I knew that it was not going to be the new average, or expected. I took yesterday as a gift.Cole slept through the night and then this morning started having clusters. I noticed too, the first real eye flutter that he has ever had where his eyes rapidly opened and closed. Add another type of myoclonic to the list. I put the pulse ox on him and he was at 75. The jerking progressed, so we started our day with two more rescue meds. He also has a lot of mucous in his stool. G tube has stopped bleeding, but the chunks of skin coming off still worry me. Back to being a detective. He is now napping off his Diastat, still in his pajamas at 3 pm and I am trying to muster the energy to wash my hair. Totally normal-for today.

We are constantly redefining what normal will be for the day, minute, hour, evening, etc. Today is a seizurey, sleeping-off-the-fun kind of a day. Who knows what tomorrow's definition will be?

Thursday, April 7, 2011


The thick fog of illness is being lifted somewhat, just leaving a thin haze behind.

You know, when you feel like everything is fuzzy and you can't really see from one moment to the next. All you try to do is survive, so you can break into the light eventually? Everything gets put on hold, laundry forms mountains and all that really gets accomplished is basic needs. You just lay in bed, occasionally sipping clear liquids, and sleeping. Rarely do you get up for anything but the bathroom.

Eventually you can focus enough to watch television, but nothing that requires thinking too much. Reading is out of the question. It is too laborious, and that is saying a lot for someone who prefers a book to almost anything else. Little by little, there are breaks in the heavy mist and you can imagine being vertical again.

I've spent the last few days watching way too much HGTV and daydreaming about the day when my furniture is not from the early ancestral period. I've also convinced myself that I am Canadian, and not a European mutt like my genealogy describes. Everything Sarah Richardson and Candice Olson does is pure genius and I have thought so for years. It was kind of like getting to store up a design feast on my DVR and have Thanksgiving Day, instead of a late night nibble here and there when I had the time ;)

Cole is starting to come around. He has more strength, but still just wants to lay around watching TV all day. He is eating a little, enjoying this new freedom of being off the diet. The doctors suggested we take him off and just concentrate on controlling his diarrhea for now. So, he is having a great time with food on demand. Such a new concept for him. He's loving the experience of being able to have as many saltines as his little heart desires, and all flavors of sugar-free jello. Oy, it is going to be hard to go back to the scale.

His g tube has been bleeding a lot, and has formed granulation tissue for the first time in months. It has us slightly worried and we are waiting to hear from the doc about what to do. It was a little loose after losing weight, but it has never just started to pour blood since the actual surgery. He is full of surprises and keeps us on our toes!

Hopefully we can get healthy enough to try and take him out to the backyard for a couple of hours. The weather has been gorgeous today (so we hear), but we just stood in the doorway and watched the squirrels. It is going to start to rain again tonight, but it is forecasted to be nice again next week. I guess April showers really do bring May flowers out here. Usually we are used to still having snow on the driveway! Maybe I'll ask for wellies for my birthday.

Monday, April 4, 2011

Risky Business

*warning: this post is a little graphic and contains multiple mentions of body fluids*

We took Cole out last weekend. We were brave, and decided to venture out and get some much needed social interaction. We took a risk. Every day we have to make decisions based on risk. I practically bathed Cole in anti-bacterial and we set off.

We had a great time at the Purple Day festivities, so much so that we were feeling good about ourselves and decided to be brave again the next day and take Cole to church for a little bit. However, in those short 45 minutes, he was exposed to some sort of illness. Another one of our everyday-life-experiences turning into life-threatening-dramas.

Tuesday, he started having diarrhea and did not want to eat much. This has happened other times we have gone to church or public places, where he touches things and then puts his hands in his mouth no matter how many times I wash them or tell him not to. I wasn't worried.

Wednesday, at 1:00 am he threw up, in his bed. It was everywhere, even in his eyelashes, then he proceeded to puke again on our carpet downstairs while I was trying to clean up the mess in the bedroom. He was having clusters, so we gave him Diastat and we all piled in my bed around 4:30 am. The entire family slept through two alarms for Daddy at 5:30 which, if you know me, is a BIG deal-Brian, not so much. Wed proved to be a hard day for Cole, with multiple clusters, high fevers (highest recorded was 103.8-this was 30 min after a tylenol suppository) and a 49 minute status episode which took Diastat, Klonopin and Versed to stop. His O2 dropped to the 60s, but we were thankful that he didn't have another 10% episode. My entire house smelled like death warmed over, something that even Scentsy can't mask. All the while, he still had diarrhea and no appetite, but I was giving him fluids through his g-tube. We knew from previous experiences that the hospital really could not do much for us except monitor him. After talking with our doctor back in Utah, we decided to stay home. We've done this before.

Thursday he seemed much better. He even ate a little bit, but it came right through him. We had company coming into town and he was lively and excited. Once they arrived, he turned into the happiest kid ever. I actually teared up when he was playing with his cousin Katherine. He rarely gets to play with other kids and he was having such a good time. No vomit on Thurs and the highest fever was 101.5, so I thought we were on the mend. Friday proved otherwise. He kept on having massive episodes of pure liquid diarrhea. 5 times in 3 hours. He was passing bile through his stool, even the long, green kelp-like strands that hang out in your intestinal tract. Even pedialyte through his tube would come out 20 minutes later. If any of you know c-diff, that is what our house smelled like. His speech had been impaired since the big seizure on Wed and was not bouncing back. He had not had a wet diaper all day. I was starting to get worried about dehydration and consulted with our doctor in Utah. She validated my concerns and told us to go in. I knew he had not really had solid food since Monday and was probably in need of some IV fluids. It can be very dangerous for keto kids to be dehydrated, as they can go into ketoacidosis (basically ketones become poisonous).

So, we had to schedule Daddy to come home (which takes an hour) and then pick him up at the metro since there was not a train running at the time. Drive over to the train station, get the GPS out of his car, (no way we could have made it otherwise) and then drive into downtown DC. I got to see the cherry blossoms on the drive-by. They really are as beautiful as everyone says. My grandparents would love them. Did not get to stop and take pictures, sorry! Our hospital experience was not so great. See my review. On top of all of this, Cole decided to be friendly and share the love.

I started feeling nauseous in the ER, but with my gallbladder issues I was not too worried. Besides, hospital food always tastes awful. My back was killing me and I thought I might be having a kidney stone, a long time nemesis of mine. Shelved the pain and focused on trying to get my boy admitted. Had a terrible time sleeping on Friday night, but did not worry too much about it-we were in a hospital! During morning rounds, I was standing outside the door with the doctors, discussing Cole's case and I felt an overwhelming wave of nausea. Now, I am a pro at throwing up. I did it every day for 5 1/2 months straight while I was pregnant. I learned how to puke while driving, while in a meeting, on the phone, just about anywhere and keep going about my business. I just held up a finger and told the doctors, "Excuse me, but I am REALLY nauseous. I will be right back". I proceeded to walk into the bathroom, lose my awful hospital cafeteria dinner and then walked back out to the conference. I had watery eyes and probably looked like a zombie, but I told them to carry on. The vertigo kicked in later.

I continued to throw up throughout our stay and the rest of the day. I could not even hold down ice chips or water. Oh, dry heaving, my long lost companion-why did you come back for a visit? Needless to say, it has been awful. I have no strength and have lost over 10 pounds. Not a healthy, recommended way to lose weight, but definitely effective. I have been drenched in sweat from fever, enough that it is making my hair curly. The hot, cold, hot, cold is not particularly enjoyable. So sorry Facebook friends, I didn't update when we were released because I could barely hold my head up! I will say this though, I am so grateful for our church. It is an immediate built-in support system. With a few texts and one phone call on Friday before we headed out to CNMC, we had everything taken care of. Someone came to walk my in-laws dog, as they were out sight seeing. There have been phone calls, e-mails and text messages checking in on us. Our bishop was preparing to go to Dubai for work the next morning and was going to come into town and see us. We waved him off, but were touched that he was willing when he was obviously so busy. People have brought meals, came to visit, and offered to do anything that we needed. We found out that Cole did get sick at church, through people reporting that this particular illness had been floating through our ward. At least we know the source this time, but doubt it landed anyone else in the hospital! People even offered to come into town and pick me up, to bring me home, when they heard I was now sick and discharge was being slow. I am glad that I did not take them up on that offer, because I threw up three times on the way home. However, I know that they were sincere. One friend even offered to drive 9 hours to come and help me out. There were offers to take me to the ER since obviously Brian had to stay with Cole. This is just how we are. We are programmed to pull together and help each other out when needed. Even if it is not a medical emergency, it is just part of our culture. We have been here for a month, and these people are practically strangers, but we immediately are a part of a family; and I know that it would be exactly the same any where else in the world that I moved. For someone in a new town, new state and pioneering through a new hospital, it was a comfort to me to have something so familiar.

Cole is still sick today. Lethargic and weak. Still has delayed speech. Still has diarrhea. I really, really do not want to have to take him back to the hospital. I can finally stand up for a short period of time and have kept down my first bit of food since Friday. Miraculously Brian seems unscathed.

So, do we take a risk and continue to expose Cole to the outside world? It has smacked us in the face so many times that it just feels safer to never leave the house again. Every decision that includes passing the front door will have to be weighed, but I can't be a hermit forever. I just can't. I can't control whether people take their sick kids into public places. I can't control what the weather is going to do on a certain day, to affect Cole's seizure activity. There are a million things that I can not control. P.S. for a control freak, this has been hard to let go of .

It all boils down to the risk. Is it worth it? All for a sense of normalcy? Most of the time, yes. Other times, I am not so sure.

Sunday, April 3, 2011

CNMC-A Review

We understand now that we could never get to Childrens National Medical Center if it was a true emergency. It takes way too long to get into true "downtown" DC. We would have to go by helicopter. At least we know now. We chose to go there this time because they are a world class hospital and have a top 10 neuro unit. Cole had been sick for days, but was not seizing.

Gotta say-I was not impressed.

We spent 6 hours in the ER. It was not even really that busy. Most rooms on our hall were empty when we got there. Cole's blood sugar was 55 (that is LOW) and he was still walking around, looking like a normal kid to the untrained eye. So it was easy to ignore us, I guess. It was not until his lab results came back (5 hours after they took the blood) that the doctors said, "yeah, he is sick". Most of his levels were really low. Sometimes it can be hard to convince people because Cole is so tough and resilient. He wanted to wander the halls, pushing his IV pole like a pro, even though his lab values would have the majority of the population laying down and moaning.

When we finally got to the room, we were on the neuro floor. We though, "Great! They will know about Dravet and the diet!"-um, not really. I repeatedly had to educate people about the ketogenic diet. This is a neuro floor at a state-of-the-art hospital? I finally just ended up giving Cole his Keppra from my supply in my purse at 11:00 pm because they still had not gotten the meds from the pharmacy. We had been at the hospital since 2:30.

They did not have the extension for Cole's g-tube so we had to have a friend basically drive for 2 hours to bring us an extra. The "replacement extension" the nurse brought, was actually another g-tube. Really? I feel bad that we made someone have to drive, but obviously the staff was clueless. Traffic is crazy downtown right now because of the Cherry Blossom Festival. The dietitian actually came in and asked us how to measure the water for his KetoCal....uh, on a scale? We had to give them the recipe 4 times. I know that they took the paper 3 separate times to make a copy; where did it go? Finally, it was 1:00 in the afternoon and Brian just said that he would go and make the formula. They were all for it, since it seems like they had never prepared it before. They did not have a scale on the ENTIRE floor (this blows my mind), so he had to go downstairs, to the actual formulary and mix the KetoCal himself. He just measured some other stuff while we were there and we fed it to Cole proving that we knew he was ready for discharge.

The nurses were never at the desk and did not answer the call button. I heard they were short staffed, but don't say, "I'll be right back" and then don't come back for 2 hours. Everything was "closed" from the parking office and the outpatient pharmacy to the toy room. Really? Do they think that everyone just goes home on the weekend? The resident was actually the most helpful. She was writing orders, making phone calls, trying to get information for the case manager and actually was even one that was going to attempt to make the formula. Having worked in a hospital for years, I know that this is not something that residents do. Poor girl, I'm sure she was out of her element. The discharge took from 11-4 to get done. I know that discharges are not quick, but really? Do you need 5 hours for some paperwork?

The whole time we were there, I was also sick...but alas, that is another post entirely.

Dear CNMC-
Prove to me next time that you are world class. I understand that your neuro floor was short staffed. However, 6 nurses to 20 patients is not that short staffed. I also know that we were unfortunately there on a weekend. However, a life-threatening illness does not take breaks. I felt we received poor treatment and I've been to enough hospitals to be able to compare. Truly, it made me miss PCMC. I don't care that you had a flat screen TV in the room, which was quite large and recently renovated. You looked great on the outside, but the service was horrible and you didn't even have wireless Internet! Come on-in the words of my friend, "Do they think we live in a third world country?" ;) Unfortunately, we will be back. So please try to restore my faith in your facility. Right now, it is a little shaken.
Photos by Capture Me Candid