Tuesday, December 27, 2011

G-Tube 1 Week Update

So I was going to write yesterday about how great everything has been going. Soren had been getting more and more comfortable, recovering from his surgery. I was getting more and more adept and giving him his feeds through the G-tube. Why, in 5 days, I could crimp, flush, and feed with this tube like a master. (Those of you who know G-tube language get what I mean.) In fact, I could see how this was going to make my life significantly easier. I could do the feeds by myself, no sweat!

We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!

But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.

Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.

But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.

Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?

After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.

The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.

So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.

And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.

So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.


Wednesday, December 21, 2011

G-Tube Update

Yesterday was really rough for Soren. Lots of pain from the surgery site. So he was getting regular doses of morphine, which seemed to help briefly.

And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.

He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.

With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.

Here he is happily watching Cars. Next up, Kung Fu Panda! Amy

Friday, December 16, 2011

Thanks for the Donations

Hello everyone,

I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.

I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.

But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.

Thank you so very much for your kindness. It has meant the world to us and our sweet boy.


Monday, October 17, 2011

Ketogenic Diet: One Year

It's been a little over a year since Soren started the Keto Diet. And I must say, it's been totally worth the work and I've actually gotten good at the whole measuring, heating, and mixing of the foods.

As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.

Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.

The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.

Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!

And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.

AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.


Friday, August 26, 2011

End of Summer Update

It has been a busy summer and, thus, I have not gotten around to posting.

The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.

June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.

However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.

Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?

July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)

Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!

August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!

The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.

One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.

The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.

School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.


Friday, June 03, 2011

Keto through Colds

Hey all,

Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!

Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!

Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)

But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.

We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)

A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!

And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.

All in all, though, Soren is doing great and has been quite a trooper through a tough time.


Sunday, April 10, 2011

Keto Update: 7 Months

Soren is going in for his 7 Month Keto Check-up tomorrow, so I figured it was about time I did another update!

The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.

His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!

Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!

Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.

My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely! Amy

Sunday, January 23, 2011

Keto Update: 4 months +

I have a calendar where we mark how many seizures has each day. And there was a definite increase in December compared to the prior months on the diet. Still, it was less than before we even started.

Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.

So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)

At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.

Now, less ketosis means less seizure control. So finding out the cause is REALLY important!

But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!

The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)

I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.

The solution? Drop his calories another 100.

And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.

I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.

So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!