Tummy Issues, but What is the Cause?

Saturday was 16 days straight that Levi had vomited at least once a day.  We had had enough!  We took him down to only diluted Pedialyte that day, and he had no more vomiting.  The next afternoon we added chicken bullion soup, which is the next step for sick days on the Ketogenic diet.  He did well with that, too, so Monday we moved him to some feeds of Ketocal, the Ketogenic formula.  Instead of putting the feeds through a pump over an hour, we trickled it into a large syringe and let it flow into his tummy by gravity over about 15 minutes.  We began with one ounce and were able to progress over the next couple days to 2 1/2 to 3 ounces at a time.  He cried with the formula, but no vomiting.  Interestingly enough, he didn't cry when given water or Pedialyte.  So last night I decided it was time to try 4 ounces through the pump.  He did fine.  This morning I was expecting him to be absolutely fine and began another 4 ounce feed with 1/2 the prescribed MCT oil (this is a fatty medium chain triglyceride that raises the diet ratio to 3.5:1).  He fussed throughout the feed, but I didn't think too much of it.  Not five minutes after it was finished he vomited every bit of it.  How upsetting!  He had gone three full days without throwing up, I had really thought it was over!  He's been able to take dilute Pedialyte and small bits of formula again.  I tried to give him 2 ounces this evening but only made it through one before he began gagging.  I plan to start continuous feeds in the morning for the entire day so his little body can get the nutrition it needs.

We have a GI appointment on Friday, and I'm very much looking forward to hearing what his doctor has to say.  Originally when they planned the G-tube surgery they were also going to perform a Fundoplication (a stomach surgery to correct GERD, or reflux) but since he was taking goal feeds with no reflux the doctors decided that it wasn't necessary.  We don't really know what's going on, but we think reflux is unlikely since the Nexium has been controlling it, and the vomiting began so very suddenly.  Hopefully everything is fine and it's just taking his tummy a while to rebound after the extreme gastroenteritis.  Please keep Levi in your prayers!!

This pic was taken at our last hospital stay.  St. Louis Cardinals baseball player Lance Lynn was passing out Build a Bear toys wearing Cards shirts to the children, and he autographed the shirt.  He was so kind and compassionate, we really enjoyed the visit!!

Diet Change and Sippy Cup Success!

Mr. Levi has once again taken a huge jump on the scale this week.  Last Monday he weighed in at 19.8 pounds, and yesterday was a surprising 20.4 pounds!  Needless to say, his daily calories have been cut slightly from 660 a day to 630.  We are hoping to see the seizures start lessening more with this new diet tweak.

We have begun using a sippy cup with great success!  He only will take the bottle with ketogenic formula and absolutely refuses to take anything else from it, so we were left with using a syringe to get small amounts of water down him, and not coming anywhere close to meeting his daily fluid needs.  Thankfully we found sippy cups that we can hold to his mouth and squeeze slightly and all he has to do is swallow, which he does very well, even with the thinner fluids like water.  What a relief!

He is still doing great on the ketogenic diet and we are looking forward to even better results as time goes on!

Neurology Visit

I know some of you are waiting to hear how the neurology appointment went, and I would have posted sooner but we have been very busy.  On the way home from Cardinal Glennon we were cruising happily along 255 and all of a sudden lost the transmission.  Thankfully we were close to home and able to easily have the car towed while Mom came to pick up Levi and me.  So Patrick had to take off work while we frantically shopped for a new car.  We got a great deal on a nice Dodge Caravan.  I think the last time I owned a van Tommy was Levi's age (17 years ago!)!! 

So on to the neuro appointment:  It was an emotional roller coaster of happy and sad.  Our favorite neurologist, Dr. Chrusciel, is leaving next month and this was our last time seeing her.  She has been with Levi since the beginning when he was in the ICU, and it will definitely be hard to lose her, but it's a wonderful opportunity for her family and we are excited for her!  We were so glad that she was able to see Levi so active and happy.  We spoke about the daily seizures and she said she'd like for us to stop counting seizures.  At first this felt like utter chaos to me.  I've been counting seizures almost every day for the last year.  How will I know what's going on if I don't keep a log?  What on earth will I do with myself if I'm not watching him every moment of every day?  It didn't take long for the initial shock to ease into a feeling of euphoria.  No more seizure counting!!  No more overanalyzing at the end of the day!!  What a relief!  I have to say, it's been wonderful!  When I came home, I picked up the seizure log and stuffed it in a drawer, out of sight, and definitely out of mind. 

So everything looks great.  Both doctors were thrilled to see that Levi has gained nearly two pounds in the last six weeks since he started the ketogenic diet.  He has always been below the growth curve and now, for the first time ever, he is ON the curve!  Go Levi!  He really showed off, it was so cute.  He was holding his head, kicking his legs, and grinning from ear to ear.  He actually learned how to raise his shoulders (from a reclining position) and sit up just that morning, and he was practicing it over and over!  This is something that he used to try to do to no avail, and then completely lost even the desire to try.  Now he not only is trying again, but succeeding!  What a blessing! 

I thought we would be tweaking the diet, but Dr. Arun wants to hold steady and give it time.  I have no issues with that.  As long as he keeps progressing at this rate I'm a happy camper.  The seizure control will come.  Sometimes it just takes a while.  As far as medication goes, we are weaning off everything but Phenobarbital.  We have already begun the Lamictal wean, which will be followed by Keppra and then Clobazam.  This is exciting in and of itself.  The less meds he's on, the more he will gain in alertness and progression.  It will take a while, but by Christmas he will be on only Phenobarb and Nexium. 

When we think of how far Levi has come from that five pound little peanut hooked up to life support and trees of IV medications, we are just so thankful.  God has healed Levi, and he is finally beginning to show all signs of moving toward the milestones he has missed.  This is a wonderful place to be, and we are looking forward with great anticipation to the future.  Thank you all for your continued prayer!

Ketogenic Diet Day One

We arrived at the hospital at 8 am and went through the usual admitting.  We got Levi settled into a room, and were thrilled that he didn't need to be hooked up to monitors.  That meant we could take him to the cafeteria to eat with us, or go for walks, or what have you.  Definitely nice to have other options besides being stuck in one room!  I met with the dietitian, Jamie, and went over the meal plan.  Levi was to drink 3 five ounce bottles of ketocal today, with no solid food.  I learned how to test his urine with keto strips.  They took his blood sugar level to get a baseline, which was a finger stick, but he barely whimpered.  Such a good boy!  We met with the neurology team and discussed medications.  Since sugars are strictly limited on the diet, we had to switch four of his six meds to pill form, and in some cases the dosages had to be changed slightly.

Levi had his first bottle of ketocal at noon.  I have to admit I was nervous.  First, he doesn't typically eat much at lunchtime, and I didn't know how he would respond to a new formula.  He did amazing!  Either he liked it better than Nutren Jr, or he didn't really notice a difference.  He got through his usual three ounces and started to stall out.  He was making sucking motions but not drinking.  Remembering the early days when he was a newborn and the OT had to use a lot of chin and cheek support, I squeezed his little cheeks slightly, and lo and behold, he was drinking again!  What a relief!  He finished every drop of that bottle, and the four o clock bottle.  The eight o clock bottle was a completely different story.  The meds started trickling in from the pharmacy (once we got them all straightened out), but of course they were pills, and we had no food to sprinkle them on.  SO the nurses put them in a bit of water and squirted them in his mouth with a syringe.  I have to say, he did better than I would have!  Except for gagging once, he took all of them.  However, he just couldn't make it all the way through the eight o clock bottle.  He has never liked taking food late in the evening, and he was getting tired.  He did drink half of it.  By the time 10:00 rolled around we were both exhausted.  So I will speak with Jamie in the morning and see what she wants to do about it.  My guess is we will leave the meal plan as it is and see how he does tomorrow night.  Maybe he just has to get used to it.