RIP KC Kraisser

Today we are asking for prayer for the Kraisser family.  Sandy, Nicky, Johnnie, Miranda, and the entire extended Kraisser family.  Last night KC passed away in a sudden accident.  We ask that the Lord be with them and give them all His peace and strength.  KC was a wonderful husband, father, grandpa (Pops), friend.  He was well loved and will be greatly missed by all who knew him!

KC and grandson Baby Charles, who was named for him.

Ups and Downs

Now that we are home with the ng tube, we are experiencing a roller coaster of events, but hopefully now has evened out.  Last night Levi's tube got clogged, so we had to pull it out and replace it with a new one.  Easier said than done!  We each tried to no avail, then called my sister Misty, who is a nursing student and just went through tube placement training.  Nope, she couldn't get it either!  So at 10:00 in the evening Mom, Misty and I took Levi to the local ER.  After going through the regular questions about his medical history, the triage nurse called back to ER staff and told them why we were there.  "He has huge medical issues," she said.  "Huge!"  It really brought into focus how we get used to things.  This is our normal.  We don't spend our days thinking that he has huge medical issues, and the staff at Cardinal Glennon takes it in stride as well.  It was almost funny to see how nervous the nurses, and even the doctor, seemed around him.  They were great with him, but it was evident that they don't deal with this kind of thing every day.  And all we needed was a tube placement! lol

I was really close to my breaking point last night.  After spending days in the hospital, dealing with the newness of tube feeding, trying to comfort a crying baby for hours, and worrying about WHY he was crying, I just didn't think I could handle any more.  It seemed to me that he had been super fussy since we had begun the 2 hour bolus feeds every 2 hours, and I was concerned that he wasn't tolerating it in his little tummy.  So my sister asked me if he was vomiting.  I swear, the heavens opened up and the angels sang!  I realized that if he truly wasn't tolerating the feeds that he would be throwing up and having more issues than fussiness.  This is something I should have realized, but sometimes when we go through so much difficulty in a short period of time, and latch onto a negative thought, fear can quickly set in.  Thank God Misty intervened with a voice of reason.

Today has been a lovely day!  We went to 3 ounce feeds every 3 hours and he's doing great!  He's been happy and able to entertain himself at times.  We sat on the deck for a long time enjoying the smell of honeysuckle, the chirping birds, and nice breeze.  It's been a while since we've been able to just relax and enjoy.  It was glorious!  Hopefully it will only get better from here!

Swallow Study

We just came back from the swallow study.  On the positive side, Levi is not aspirating, or silently aspirating, which Molly was concerned about.  However, the food and drink does pool at the back of his throat before he swallows, and residue is left at the back of his throat even after he swallows, which puts him at risk for aspiration.  So Molly's recommendation is that he definitely have the G-tube, with no feeding by mouth at all.  We can repeat the swallow study in six months in the hopes that a break from actually eating will be a good thing, and maybe he can start eating small amounts by mouth at that point.  We had a consult with someone from the surgery team this morning.  He will speak with the other doctors, come back to evaluate him further, and let us know the plan.  I have requested that they perform the surgery while we are here, but so far we don't know if their schedule will allow that.  I am praying to just go ahead and get it done.

Holy Crap!

So Levi tolerated the first one ounce ng tube feed fine.  I was concerned about the planned 6 ounce feeds, given over the space of an hour, because of the recent vomiting issues, but the doctors wanted to try it to see if he could tolerate it.  Well, about three quarters of the way through he started throwing up and pooping at the same time, just all of a sudden.  We got the feed stopped and began cleaning him up, and noticed that the poop had climbed all the way up his back.  And what did he happen to be wearing?  You guessed it, a white onesie!  A particularly cute one, with little fuzzy baby animals on the front.  One of the nurses was nice enough to hose it off and soak it for me in the hopes of saving it.  I'll venture up to the Ronald McDonald room tomorrow and throw it in the wash while keeping my fingers crossed.  But honestly, there's very little white left!  Kudos to our nurse Caroline, she had a huge mess to clean up, and she did it with a smile!  And of course everyone needed to call her phone while she was elbow deep in Levi poop.  Poor woman was BUSY!!  The little guy is all clean and settled in now.  It didn't really bother him, he slept through the entire mess!  At least it wasn't a boring night :)

New Updates

We were happy to see that Molly was indeed the OT who came to evaluate Levi's eating.  I was hoping she would say he did well, but that was not the case.  She said he still chews everything pretty much in midline, like an infant, instead of pushing food to the sides of his jaw and chewing.  She has a few concerns, but we'll know more once the swallow study has been done.  He is scheduled for both the swallow study and an upper GI tomorrow.

Levi couldn't eat much of his food for gagging.  We just went ahead and stopped trying so he wouldn't vomit what he'd taken in, which included the antibiotic for the ear infection.  He now has an NG tube down his nose, and is at the moment trying a one ounce feed to see how his tummy tolerates it.  If all goes well they will start with 6 ounce feeds four times a day of the ketogenic formula and mct oil, which adds fat needed for his diet ratio. 

We have decided to go ahead with the G tube.  All teams of doctors agree that it is necessary.  I did my very best to keep him from it, but we just can't get enough volume down him.  Evidently the tube feeds will be continuous through the night, then he can have a couple snacks or meals during the day.  It doesn't sound as bad as I thought.  So I've come to terms with it and am now on board. At this point, I'm hoping they can do the G tube while we are here, so we don't have to come back for it.  There again, we'll know more after the tests tomorrow.

When we went down to the cafeteria to get supper we were surprised to run into our friends Amy and Doug.  You just don't expect to run into people you know at the hospital. lol  Their daughter broke her hand.  Poor Cassidy!!  They are in our prayers, and it was so great to see them and their daughter Allison!!

Going for a ride!



In the Hospital Again

So for the past few weeks Levi has not been feeling well.  For almost two weeks now he's had flu-like symptoms of gagging with and without meals, and vomiting with meals.  I thought it was a flu bug, but now not so sure.  We went to the ER last Friday.  They gave him some fluids but he was only slightly dehydrated, and took many tests, all which came back normal, thank God.  They figured he had a virus.  Once Tuesday rolled around and he was still sick, not eating or drinking much, no urination or bowel movements, we knew we had to take him in again. We were admitted overnight for hydration, but I've still been concerned that so many new symptoms cropped up at the same time, I wondered if it was not a virus, but some other underlying cause.  Thankfully, the neurology team agreed with me, and we are in the midst of running tests.  The normal phenobarb level test, which may result in a dose of IV phenobarb, and a test to check his thyroid.  They want to rule out seizures as a cause of the new symptoms.  I don't really feel like it's seizure related because the seizures have been less frequent and more mild since he's been sick, but you just never know.  I love that they are very thorough and look at every possible cause!  I've definitely been known to be wrong at times in the past. lol  In fact, I allowed IV fluids with a small amount of sugar (which is very restricted on the ketogenic diet) because I was mostly concerned with hydrating him.  Now he's been having many more seizures today.  I'm thinking that was the wrong decision!  The dietitian has let the nurses know which IV fluids he should have, so hopefully that will resolve in time once the fluids are changed.  Right now he's sleeping peacefully with Daddy. 

We did have the dreaded G-tube discussion.  I have spent the last year force feeding this little guy in the attempt to avoid any type of tube feeding.  I completely broke down in front of a whole team of doctors and med students this morning when they brought it up, even though I knew at some point it would be discussed.  How embarassing!  I'm feeling better now, though.  Even though it was something I never wanted to happen, I really have to look at the greater good here.  1) Levi would get all the fluids and nutrition he needs every day, 2)  We wouldn't have to spend a large part of the day making him eat food he doesn't want.  That being said, I'm still praying that this whole thing is due to a nasty virus and once he gets over it and is well hydrated he'll have more of an appetite! 

The OT is coming up at 3:00 to watch him eat and evaluate him.  It would be nice if it is Molly.  She taught him to suck the bottle again after he was in a coma when we were here originally. On the bright side, Levi has been very happy and animated today!  We haven't seen him this happy in weeks!   I'll try to keep fresh updates as I have information.

Levi and Daddy

So Many Changes!

I've been meaning to update the blog for quite a while now, but have been so busy!  This will be a long post!

First off I am so happy to say that our grandson Charlie will be home more often now, and in December the guardianship is dissolved and his parents take permanent custody of him!  The guardians live 5 hours away and did not allow us to have contact with him, so this is a very exciting and long-awaited development!  We have all been praying throughout this ordeal.  God is always faithful!!  I will post pics below.

As far as the Ketogenic diet goes, we raised the fat:carb/protein ratio from 3:1 to 3.5:1 last Wednesday.  The seizures are better than they were prediet in number, duration, and severity, but he still has multiple a day.  We no longer count, but I would guess around 50-60 a day.  The first 2-3 days after the ratio increase the seizures were very low and mild, and the focal seizures were pretty much gone.  Then they went back up again, and I'm really not sure why.  It could be that for 3 days before the ratio increase Levi was refusing bottles so he didn't get as many calories.  We have been thinking all along that a calorie decrease may help the seizures.  This is just one more instance that points to that.

He has decided that bottles and formula are a thing of the past.  He refuses to take anything from a bottle, and will not take the formula at all.  So he is drinking from a sippy cup and eating 4 solid meals a day!  This is going very well, except we have not been able to meet his fluid requirement, but then we never have been able to.  He is doing remarkably well with a cup, and each day his fluid intake increases.

He is sick today, so we are using "sick day" guidelines.  This means he can actually drink dilute pedialyte (which he loves and can't have anymore) and we are hoping he will be able to take sugar free jello at mealtimes.  Poor little guy threw up with his first bite of breakfast.  So we are cuddling and relaxing today.

He's awake now, so I'll save the rest of the updates for later.  Enjoy the pics below :)

Thank God for Coconut Oil!

As you know, the ketogenic diet has been a bit of a challenge, in that the volume of food is sometimes more than Levi can take.  Over the past weeks I've been trying to create meals that he likes, and we've had great success, but have still had to force feed him once he is full.  (Sometimes he begins the meal already full!!)  He won't drink the heavy cream from a bottle, it's too much to give him in a cup, and although he likes it whipped, he just can't always eat it all.  So I set out on a quest to find alternate choices of keto friendly foods that are high in fat.  Enter coconut oil.  I know that this is high in the good fats, triglycerides, and helps to raise and maintain ketones.  We have been using it as a skin moisturizer since, sadly enough, Johnson's baby lotion is not keto approved because it contains glycerin, which contains carbs. Yesterday I calculated a meal with coconut oil and absolutely NO cream!  It mixes easily into many foods, and the volume is so much less! 

Today I made him a peanut butter cup using unsweetened baking chocolate, coconut oil, peanut butter, vanilla extract, and liquid sweetener. I'll be trying it out at lunch.  I'll also be trying to put it in his mouth and have him bite pieces off.  Now that he has 5 teeth (he just cut a new one!) this shouldn't be a problem for him.  The best thing about it is that this little peanut butter cup, about the size of 1 Reese's, is his entire meal!   I tasted it and it was pretty darn delicious!  I hope he likes it!  So continues the quest for new meals sans heavy cream.  All I gotta say is, thank GOD for coconut oil!