Saturday, December 29, 2012

So Many Changes

Lately life can best be described as a roller coaster.  Levi swings between wonderful moods with huge grins to screaming fits.  These can rotate within the time frame of a single day, or even a single hour.  The new screaming fits are reminiscent of a newborn displaying the fear of falling.  His hands fly out and start to shake, and he screams in what seems like terror.  As soon as we pick him up, or hold him closer, he's fine.  We're not at all sure what has brought this on.  Some theories include the fact that he's been through a lot of hard times with bad memories in the last few months (hospital stays with many needle sticks, etc) and he is remembering and fearful; fear of falling; pain of some sort, maybe in his belly or g-button; that he is seeing more clearly (of which we have seen evidence) and some things look different to him, causing fear.  Really we just don't know.  We've taken video of one of these episodes and will forward it to his neurologist on Monday.

We have stopped giving him MCT oil.  This is a medium chain triglycerides oil, very fatty, that raised his Ketogenic diet ratio from 3:1 (fats:carbs/protein) to 3.5:1.  The higher the ratio, the better seizure control.  He has been experiencing a lot of belly pain and gas lately that seems to be caused by the oil.  Just today we switched to the 4:1 formula, with a bit of apple juice to bring the ratio back down to 3.5:1.  I'm excited to be giving him something as natural as apple juice!  Of course he doesn't taste it, but it's nicer for me to give him something that actually is supposed to be eaten, rather than nasty heavy oil.  Sometime soon we will stop the apple juice and raise him to the 4:1 ratio.  I'm hoping the apple juice will help with his bowel issues as well.  He is not pooping on his own again, we have been giving him enemas every 3-4 days.  We continue to give Miralax but it doesn't seem to be helping anymore.  We are at bolus feeds of almost 4 ounces three times a day, with continuous feeds overnight.  I will speak to his GI doctor on Monday and see what he thinks about starting a stimulant laxative called Senna.  This option was discussed during our last hospital stay, but Levi started going on his own.  Dr. Rosenblum may decide to put him back on continuous feeds, increase Miralax, or add another medication in combination.  I'm not really sure what direction he will take us in, but I feel like we're stalled right  now and need to move forward with something else.

Developmentally Levi is doing very well!!  He is holding his head and trunk most of the time.  He flops a little bit, but he knows what he's supposed to do and, more importantly, he is interested in doing it.  At the Christmas Eve service at church the little monkey held himself better than I'd ever seen him before!  He was sitting straight up on my lap, looking around at everything with big, sweet grins.  The other night we were reclining in a chair when he lifted his shoulders up and sat forward.  He's been doing this quite a lot lately, but this time when he sat as far forward as he could and still wasn't straight up, he wrapped his arm around mine and pulled himself up!  Not only once but several times!  It's moments like this that I know I'll never forget!

We still have issues to iron out, but at some point things will even out for Levi and we will begin to move forward at a faster rate, with less bumps in the road.  For now, I'll bask in the glory of his smiles and treasure every moment.

Thursday, December 27, 2012

Two Years Ago Today...

Today marks two years since the most horrible day of my life.  The day Levi was rushed to the hospital by ambulance, only three weeks old, and unresponsive.  We spent an entire month at Cardinal Glennon Children's Hospital, and have dealt with many issues since then, including brain surgery, acid reflux, epilepsy, hip dysplasia, Ketogenic diet, feeding tube, and more.

I used to look back on that day with feelings of regret and guilt, but now all I see is how God has worked through those terrifying situations.  Yes, the brain surgery was scary, but a shunt was placed to drain the excess fluid from his brain into his stomach, which works beautifully and we have all but forgotten that he even has hydrocephalus.  It took months of screaming and ER visits to discover that he has severe GERD, and trial and error to find a medication that would work for him, but that is now controlled.  Hip dysplasia was found by accident when x-rays had been taken for a different reason, and I hated that cast more than words can describe, but he only had it half as long as expected, and his hips are working well now.  

Epilepsy has been our biggest hurdle.  Once he developed infantile spasms we tried medication after medication to combat the seizures, but each med either did not work enough, or made things much worse. The Ketogenic diet was offered to us many times, but we had read negative things about it and decided to use it as a last resort.  The decision to start the diet came last Spring when we were told we were exhausting the list of meds that we could try.  I wish I had researched it more extensively early on, because it has been the miracle we were looking for!  When Levi started the diet in May he was taking five anit-epileptic drugs and still having over 100 seizures a day.  Now, Phenobarbital is the only seizure med left, and we are in the process of weaning it off!  The seizures are not completely gone, but we are seeing only a handful a day!  We are about to make another change to the diet and I expect for the seizures to be completely eradicated at that point!  What a blessing!!

So through all these very serious issues, the Lord has been at work healing Levi, and building our faith.  If I have seen all that Jesus has done for us over these last two years, how can I not believe that he will do even more for us in the future?  I have SEEN him work miracles.  I KNOW he heals.  I can't wait to see what he has in store for us this year!!

January, 2011

December, 2012

Monday, December 3, 2012

Happy Birthday, Levi!

Today is Levi's 2nd birthday.  What an exciting age!  I'm happy to report that he is doing so much better since my last post.  Although his bowels don't seem to be completely normal yet, they are doing well.  He is happy again!  He wakes up with smiles and has been kicking his legs, moving his arms, holding his torso and head, and generally starting to progress again.  He's finally back to where he was just before the G-tube surgery.  He's sleeping through the night, which has made a world of difference for all of us!  We are so thankful to be in this place, after the 3 month nightmare of battling bowel issues.  Praise God, from whom all good things come!  We are excited to see where this next year takes us.

Saturday, November 3, 2012

Finally Starting to Feel Good Again!

Today was a great day!  Levi had a big poop overnight :)  This morning we cuddled together and slept in until 8:30.  He chilled in his recliner while I drank coffee, then he laid on my bed and gazed out the window with his kitty mama, Skittles, nearby to keep an eye on him.  We got him dressed in cozy warm clothes and went out to lunch with Daddy, then shopping at Target.  He stayed in the stroller the whole time with no fussing whatsoever, looking around with interest.  There was no crying in the car either!  Then off to our grandson Charlie's first birthday party.  Now he is sitting in front of the TV watching Baby Einstein, and actually watching it.  I don't think we've had such a lovely day since going on three months ago.  Thank you, Jesus!

Miranda, Levi, Charlie, and Veronica :)


Friday, November 2, 2012

He's Pooping!

Finally, Levi is pooping on his own!  He overfilled diapers on Monday night, Tuesday night, and Wednesday night.  Yesterday he was still very cranky. We have been venting the feeding tube with a large syringe to allow the gas to escape his tummy.  This works very well, and within 15 minutes he settles down and feels better.  Today he has been very relaxed and not fussy at all.  He's still sleeping a lot and isn't smiling, but he's well on the way.  We can't expect him to feel completely better within a couple days, when he's been sick for two and a half months.  We are just thrilled that his bowels are beginning to work again.  Thanks for all your prayers!


Tuesday, October 30, 2012

In...and Out...of the Hospital

Sunday night Levi's belly had become distended again.  He was bearing down and crying all night long, but couldn't pass anything.  We came into the ER at Cardinal Glennon.  They gave him an enema (something I wouldn't have done on my own since he'd just had a rectal biopsy) and had huge results from that.  We were admitted and saw I think the only GI attending physician that we haven't seen before.  He explained they have done all testing they think is necessary and unfortunately we just have to wait this out with the plan of Miralax/enemas until he starts going on his own.  I didn't want to hear that, but since all the GI docs agree on that, it must be true. So my most pressing point, then, was what do we do to keep him comfortable in the meantime, while we are waiting.  He fusses and sleeps all the time, he's in pain, he doesn't smile anymore.  He said to give Benadryl. I don't like to make him sleep all the time, but it does make him comfortable, so I will just have to be ok with that.  He also talked about a different laxative that can be given, called an irritant laxative, that would help the rectum to contract.  The strange thing is that even though he hadn't pooped in almost a week, the x-ray showed almost no stool.  He said it's possible that because it's so watery it's being expelled with his urine.  Now today we have a different attending GI doctor, and he doesn't want to go with the new laxative. We are being sent home today on the same plan as before, with a suppository or enema scheduled every few days if he hasn't stooled.
Now for the exciting news!  This morning at 4 he pooped all on his own!  Several times he has passed gas!  I'm praying this is almost over!

I believe everything happens for a reason.  I met a lovely lady today who shared with me her desire to join mission work.  She wants to be the hands and feet of Jesus.  If we had not been here, we may never have met.  It was such a blessing to share our faith and to be touched by such a caring spirit!

Friday, October 26, 2012

Biopsy Results

Well the results are finally in, and Levi does not have Hirschsprung's.  I have to say I'm disappointed, because now we are still facing the unknown.  Why can't he poop or pass gas?  Why is he so uncomfortable and miserable?  The last couple times we used the rectal tube there was hardly anything there, so is his body not even creating stool?  What is happening to all the food that enters his body 24 hours a day?  WHY did it all start with the g-tube surgery? 

I guess the plan at this point is for 24 hour continuous feedings, daily Miralax, and wait.  If this doesn't work, maybe we can start motility meds, depending on which GI doctor we talk to.  And what kind of time frame are we looking at before we start that?  I'm not in the best frame of mind to talk about this right now, so I'll just leave it at that.

On the bright side, Levi seems to be adjusting to home and realizing that he's home.  He had therapy with Shawnery today, which started out rocky but she was able to calm him down and work with him.  He fell asleep and slept in the new feeder seat for a very long time. We have actually seen a couple smiles from him today!  Please keep him in your prayers!


Thursday, October 25, 2012

Heading Home Today!

I am so excited to finally get out of here and go to my lovely home!  I've missed it so much!  When we left the leaves on the trees were just starting to turn, and now the majority of them have fallen.  Looking forward to rocking Levi on the porch swing and watching the squirrels steal apples off the ground.  I think Levi will feel better at home, too.  He knows now when they pull his finger out that he will be stuck, when they mess with his IV that they will flush it, which he hates, and I'm hoping he will relax and start to smile again when we get home.

The results of the biopsy for Hirschsprung's have still not come back.  It should be this afternoon or tomorrow morning.  The doctor wanted to keep us until the results were back, but took pity on me and let us go home.  If it is positive, we will schedule surgery and come back for that.  If it is negative, the plan at home is to go on with continuous feeds, start daily Miralax again at a higher dose, and pray to GOD that his bowels start up again.  If that fails, then we can look at medication for motility of the bowels. (Some doctors are against it, some are for, but thankfully the docs we will be seeing will prescribe it if necessary.)  This makes me feel better.  To me, it means that if Plan A doesn't work, there is a plan B.  It's not ideal, but it is what it is.  I just pray that we don't revisit the cycle of gagging/vomiting/no pooping. 

From a neurological standpoint, we will go up slightly on Baclofen, which is the medication that loosens his tight muscles, caused by cerebral palsy.  We have noticed a tremendous difference so far!  This med can cause more seizures, and we have seen increased seizure activity, but he's been through so much that can also be the cause that for now I'm not worried about it, we'll just continue to monitor him.  I'm praying that it does not increase his seizures, because it makes such an amazing difference!  I'm sure he will have an easier time in therapy, and learning to reach for toys, crawl, etc now that he has more flexibility in his limbs. 

Please continue to pray for Levi, that his bowels will work regularly again, that the seizures again decrease, that he feels better and can be happy again.  We haven't seen a smile from him since the day after we got here, almost three weeks ago.  Thank you so much for following his blog and supporting us with your prayers.  We are praying for you, too!   I know the Lord is with us every step of the way, and you all help to make that happen!  You will never know just how dearly we appreciate you!


Wednesday, October 24, 2012

Going Home?

Our regular GI doctor was here this morning.  Some of the GI team believe that (if he doesn't have Hirschsprung's) Levi's slow comeback after surgery could be due to neurological issues, so they are calling in the neuro team today.  Since they aren't doing anything here that we couldn't do at home, Dr. Rosenblum is talking about sending us home tomorrow.  He said we don't need to sit here and wait any longer, especially since flu season is here and he definitely doesn't need that.  If Levi has returning issues of gagging and vomiting we can call him.

We have decided to organize a care conference with neurology, GI, surgery, and dietary.  It makes great sense to us to have all the doctors in one room to discuss Levi's issues and a plan to resolve what's wrong.  Dr. Rosenblum was completely on board with this, and Joanna from the Footprints program is working to make that happen for us.  Thanks, Joanna!! 

The biopsy results have not yet come in, but I will post an update as soon as I hear anything.  It could be today, or any time within the next couple days.  I'm praying it's soon!


Tuesday, October 23, 2012


The rectal biopsy was done very early this morning.  Levi did very well, and has been sleeping restfully ever since.  He was crabby and awake much of last night, so extra sleep is great for him today.

The nurses were flushing the rectal tube every four hours yesterday, and through the night, with saline solution.  This cleanses the stool from the colon as well as helps to "wake up" the bowels.  I was surprised at how little stool was actually present, after four days of no bowel movement/rectal tube, and being on regular feeds the entire time. 

Now we just wait for the results to come in.  Hopefully we will hear the news tomorrow, but it may take a couple days.  I still pray for Hirschsprung's syndrome.  Otherwise we are running on theories.  I don't like to think of weeks or months of continuous feeds/suppositories/enemas/rectal tubes, and the like.  Please keep Levi in your prayers :)

Monday, October 22, 2012

Biopsy Tuesday Morning

Levi is scheduled for the biopsy on Tuesday morning.  Please join me in praying for his safety.  I will also be praying that he has Hirschsprung's Syndrome.  For me, it would be a definite answer and solution.  Although I don't want him to have to undergo another surgery, it seems preferable to doing the same thing we've been doing for weeks or months down the road in the hopes that it will self correct.  I just truly want these issues to be fixed.  Levi has been through so much!  I will update through the day tomorrow.  Thanks for your prayers!


Waiting Around to Wait

Well the biopsy will not be done today.  Hopefully we find out today when it will be done, though.  So we are waiting for the biopsy, then will wait a minimum of 3 days for the biopsy results.  If that comes back negative I guess we will continue with continuous feeds and wait to see if his bowels start working on their own.

The dietitian raised his calories slightly because he has lost so much weight.  When we came in here two weeks ago, he weighed 18 pounds 9 ounces.  Last week he weighed in at 17 lbs 1 oz.  The sad thing is that he had been doing so very well on the ng tube before the surgery, he was looking pudgy and had grown up to 20 1/2 pounds.  That's a lot of weight for a little guy to lose!

He woke up crying this morning and has been crabby ever since.  His belly is largely distended again, so they will be placing a rectal tube today to drain the gas and stool.  It's been four days since this was last done.  I can't imagine how awful his tummy must feel.

Please keep the prayers coming.  My frustration is growing, and although I'm trying to be positive I'm finding it more and more difficult.  Thanks!


Sunday, October 21, 2012

So Frustrating

This week Dr. Foy is the GI doctor on hospital rounds.  They are still planning to do the surgical biopsy this week, whenever surgery can fit us in.  Unfortunately they are down two surgeons this week, but hopefully we won't have to wait too long.  The doctors don't think that Levi has Hirschsprung's, but it does need to be ruled out.  Dr. Foy's theory is that the trauma of the surgery caused damage to his nervous system, and that we should continue as we have the last month with continuous feeds and begin suppositories again.  He said we can give this course of treatment six months, and if it doesn't correct, he may need to have colon surgery that would result in a colostomy bag.  I am definitely praying that it does not come to this!!  I feel like we're back at square one, doing what we've been doing, which doesn't seem to work.  What he said does make sense, I'm just so frustrated that no one seems to have a definitive answer.  For some reason, they have not been discussing starting medication to increase motility of the bowels.  I'm waiting for someone to come in and talk to me about that now.  Unfortunately I didn't think to ask him while he was here.

So for now we are still in waiting mode.  Hopefully the tides will turn and something will happen soon, whether it be a diagnosis of Hirschsprung's, or even better, for Levi's bowels to begin working again.


Friday, October 19, 2012

Another Biopsy

Dr. Rosenblum was just here with the unfortunate news that the biopsy sample was insufficient for testing.  We will consult with surgery today, but Dr. Vane isn't here until next week, so it will be Monday at the earliest that the new biopsy is taken.  We were trying to keep him from another surgery, but at least they will definitely be able to take enough tissue for a complete testing.  Then we will be waiting around three days for the results.  If it is positive for Hirschsprung's Syndrome then he will go into surgery to correct it. 

It may sound funny to some of you, but I'm hoping it is Hirschsprung's.  This would give us a definite answer and a solution.  I've researched it, and Levi has all but one or two of the symptoms.  Not only would this give us an answer for what he has been going through the last two months, but also all the constipation/tummy issues he's had his entire life.  The best part is, it's completely corrected by surgery.  His entire little life would be so much better!  One of the symptoms is explosive bowel movement during a rectal exam.  This makes me laugh in memory of the time last year when we were yet again in the ER with constipation/gas/screaming issues.  Dr. Josephsen decided to insert the tip of his finger in the rectum to stimulate the bowels.  He got more than he bargained for!  We heard an explosive POW and suddenly the doctor was covered in poop!  You should have seen the look on his face!  He handled it so well, joked it off and left to change clothes.  The nurse completely lost it when he walked out, and the rest of the night people were popping in to see the little guy who covered Dr. Josephsen with poop!  After all the laughter had died down, we noticed that the poop had ricocheted off the doctor (who had been standing at Levi's feet), flown past Levi, and hit the wall behind his head!  To this day if Dr. Josephsen sees that we are in the ER he stops by for a visit. 

Wednesday, October 17, 2012

Testing for Hirschsprung's Syndrome

Yesterday Dr. Rosenblum decided to test for Hirschsprung's Syndrome. This is a congenital condition that is typically found shortly after birth, where the nerve endings in the intestines don't reach the rectum.  It is somewhat rare, and even rarer still to be diagnosed at an older age, which most likely means it is a mild case.  After having researched online, though, I can understand why they are testing for it.  Levi has nearly every symptom. The doctor performed a biopsy yesterday and we hope to have the results by the end of the week.  The treatment would be to surgically remove the part of the intestines that lacks nerve cells.

Levi slept all night last night, and has been more alert during wakeful periods today, though they are few and far between.. They have stopped all pain meds except Tylenol, which doesn't help him much, so when he's in pain he receives Benadryl. I wasn't thrilled with this idea, but he had the first dose today and when he woke up hours later he seemed to feel better. 

Overnight he was on continuous feeds of 15 ml an hour Pedialyte/Ketocal blend, after again going about 3 days without food. That increased this morning to 30 ml an hour of straight Ketogenic formula. If he tolerates this (which he has very nicely) they will add the mct oil tomorrow to raise the diet ratio to 3.5:1, his norm, and then Monday proceed on to Ketocal 4:1.  Not only should this increase seizure control, but we can also get rid of the oil. 

Friday he is having the cyst on his gums surgically removed as well.  Please continue to pray!


Monday, October 15, 2012

Solving the Puzzle...

Over the weekend Levi continued to scream every waking moment.  This pattern of sleeping/screaming has gone on for days now.  Yesterday morning when the GI team rounded I was probably at the most frustrated I've been.  We had been in the hospital for a week, with no answers and no ideas.  All the tests had come back normal, and yet Levi was still screaming in pain and still having no bowel movements. His tummy was no longer distended, he was no longer vomiting and gagging, so Dr. Mangalat felt that the GI issues were resolved.  She decided to call in neurology and perform another x-ray of Levi's tummy, mostly to satisfy Patrick and Dr. Rhadans, who both  thought the GI issues were NOT resolved.  They were right.  Levi had been on no food for three days (he's lost over a pound since last Monday), one day of Pedialyte, and one day of Pedialyte diluted Ketogenic formula, and the x-ray showed that gas was already building up in his tummy.  Evidently the intestines are just not working at all, not even enough to pass gas, which we knew, but what is the cause, and the solution?  Dr. Mangalat decided to confer with our regular GI Dr. Rosenblum, who by the grace of God is on rounds at the hospital this week.  He came in this morning and has decided to do a lower GI (he already did an upper GI and small bowel series over a month ago) to look for blockage or some other cause for these issues.  Hopefully that will be done today. 

Yesterday, also by the grace of God, our regular neurologist/epileptologist Dr. Gibbons was on call.  He has such a calming presence, when he walks into the room you just know everything will be ok.  We discussed starting Baclofen again, a medicine for cerebral palsy that loosens spastic muscles.  Levi was on that over a year ago, and it worked wonders for him, but just after we started he began having Infantile Spasms, and we were afraid that Baclofen caused it, but Dr. Gibbons said although it can cause seizures, it's unlikely that it caused a new seizure disorder.  So we began a low dose of Baclofen last night, and Levi also had another IV placed and began a pain medication, Toradol, which has helped immensely.  He's actually been comfortable and able to sleep.  Last night he also started sneezing, coughing, and having a runny nose.  Poor little guy! 

At least we have a new plan of action, and we'll see what happens.  Thanks for all the prayers.  Please keep them coming!!


Friday, October 12, 2012

Feeling Worse

So yesterday the doctors decided to change the plan.  Instead of calling in neurosurgery at this time, they decided to run more tests and concentrate on issues that would directly effect the stomach/bowels.  They put a tube up his rectum, attached to a bag, to allow all the liquid and gas to drain.  The results were amazing!  Right away his very distended tummy started shrinking.  Most of the tests have come back, all within normal range.  We are just waiting for a couple cultures now.  They started him on an antibiotic that is good for the gut, in the off chance that there is infection there.  His IV went bad, and they had to call the mobile team in to use an ultrasound machine to find a good vein and placed the IV in his leg, which was pretty much the only vein they hadn't tried.  It worked, but he hated it and it only lasted a matter of hours.  So now he is on a continuous drip of pedialyte through the g tube.  At least he doesn't have to go through another stick right now. 

However, he's feeling miserable today.  More so than before.  The fever is down, but he still feels horrible.  They are getting ready to remove the rectal tube and see if that is the cause of all his discomfort. 

Prayers are needed now even more so than ever.  We have theories, but still no solid reason for all that he's been going through.  Which means, of course, there is no solid solution at this point.

Thursday, October 11, 2012

New Plan, More Doctors

So yesterday I mentioned the cyst (or whatever it is) on Levi's gums.  It's HUGE and has been there for about three months.  He had a smaller one on the other side, and it popped and bled about two months ago, but this one continues to grow in size.  I've meant to take him to a pediatric dentist, but with all the other issues he's had it fell to the back burner.  I began thinking yesterday that all the swallowing he does could be linked to possibly swallowing fluid from the cyst, and if it is absessed or infected, that could be a problem.  Not that I think it's causing the issues, but adding to them.  Thankfully the doctors took me seriously and decided to call in a pediatric dentist to check it out.  It may be completely harmless, or not.

Many of his issues are consistent with shunt problems, so although the shunt series (x-rays and ct scan) looked fine, they are calling in neurosurgery to tap the shunt so they can test the fluid.  I think that just involves sticking a needle into the shunt and draining some fluid, but I could be wrong.  We will soon find out. 

Our favorite nurse Grace did basically the same thing to his little bottom.  Using a tube, she drained stool into a syringe so they can get the other two tests going. 

Dr. Rhadans was Levi's doctor last time we were here, and I feel like he has been wonderful in advocating for Levi.  I'm excited to have many new options today!


Blood Culture

Four o'clock in the morning.  I'm sitting here in our darkened room, listening to Levi screaming down the hall as they try to find a good vein to draw blood from.  The doctors want a blood culture from him while his fever is high.  Some of the nurses who are highly skilled in drawing blood tried yesterday, with no luck.  Levi is not usually such a difficult stick.  They called in the transport team, which is the medical team that flies out to work on children who are air lifted to the hospital, but they were so busy they were unable to come.  I'm praying they will be able to take the blood needed for this test so he doesn't have to go through this again.  UPDATE: the blood draw was successful!!  Please pray this gives us the answers we so desperately need!

On a brighter note, he slept for seven hours straight, and so did I.  It's been a very long time since he's slept that many consecutive hours.  That alone should help him feel a little bit better today. 


Wednesday, October 10, 2012


Yesterday afternoon Levi spiked a fever or 100.8.  He was breathing rapidly and obviously uncomfortable.  Tylenol only brought it down slightly, and after a couple hours it rose to 102.9. Advil did a better job, and Levi was able to sleep for 4 hours uninterrupted, probably the longest he's slept since we've been here.  He woke up crying, hot, and feeling miserable.  Nothing I did soothed him.  Thankfully, he was able to have another dose of Advil and he's sleeping peacefully now.  He spent most of the night whimpering in his sleep.  Poor little guy!

The GI doctor feels that it is an infection of some sort, and the fever supports that theory, even though all the tests have been normal.  We are still waiting for his next bowel movement so the remaining two stool tests can be performed.  They are repeating the CBC blood test to check white blood cell count, and when he spikes a fever again they will do a blood culture.  The doctor said it will be a lot of hurry up and wait, but that's okay.  She knows I don't care how long it takes, I don't want to leave without a solution this time.  I think she's determined to find out what's wrong.  Please continue to lift him up in your prayers, and share to others.  I know God is working through this situation, even when we can't easily see it. 

Tuesday, October 9, 2012

New Test Results, New Theories

The GI team just rounded and we have new information.  This is very exciting because at least we have a different direction to explore. The x-rays showed that the colon is now inflamed.  It may have been inflamed before, but now it's worse and very obvious, so the new course of action is to run more labs and check for things like infection and parasites. They will also try to get another stool sample to complete the remaining 2 tests ordered.  Levi had a huge poop this morning, after 4 days, so who knows how long it will be before he goes again? The GI doctor said that if all the cultures come back negative, she will send a scope up his rectum and see if that sheds light on anything.  So at least we have a new course of action planned out, and we aren't stalled with doing the same old thing that hasn't worked.

We had a very nice visit from two of the ladies from pastoral care.  They prayed with us, and that always leaves me with a sense of peace.  Please continue praying!

Monday, October 8, 2012

Back in the Hospital Again

Thank you for all the prayers!  We are really feeling them, and I think we've actually found the cause of the granulation tissue around the feeding tube button.  This morning when we changed the bandage we saw a small black spot in the tissue, which Mom said looked to be a stitch.  I called the surgery nurse, Grace, and she was able to make time for us right away.  It actually was a stitch, which had most likely irritated the area and caused the growth of tissue.  She cauterized it and helped me change the button, which was not nearly as traumatic as I'd expected. 

We had again been very concerned about Levi because he continues to vomit, have only liquid bowel movements, screaming and gas.  I hadn't been able to contact our GI doctor, and since Grace is also a GI nurse, she helped us out.  She contacted a GI physician new to Cardinal Glennon and had Levi evaluated while we were here.  The doctor agreed that something is not right, and she admitted him for observation.  She has ordered all the normal tests that we have already been through twice in the last two months since the feeding tube surgery.  We expect them to find the same thing, but I know this is the starting point.  Please pray that they find the core issue and can come up with a plan that will actually work this time!  To put it into perspective, I can describe what Levi must be feeling as having the stomach flu continuously for two months.  NOT something anyone would want to go through.  We appreciate all of you so very much!


Sunday, October 7, 2012

Call for Prayer!

Today I'm asking again for prayers for Levi.  We've been out of the hospital for over a week, and he's not doing any better.  In many ways he's worse.  He's vomiting at least once a day again. Almost every morning he vomits when he wakes up.  Twice daily Miralax and once a day suppositories are just keeping him from needing enemas, but the stool is still completely liquid.  We can hear and feel the gas in his tummy move around all day long, but he's still unable to pass the gas.  Where does it go?  Is it just circulating through his already painfully irritated intestines?  The feeding tube button continues to grow granulation tissue almost faster than we can cauterize it.  It oozes and bleeds, making bandage changes necessary twice a day.  He seemed to be feeling alright this morning, and just as we were getting ready for church, huge gas pains overtook his little tummy, and he screamed and screamed for nearly an hour.  He's so wiped out from that experience that he fell right asleep and now, 3 1/2 hours later, he's still sleeping.  Since the surgery two months ago his sleeping pattern is messed up and (excluding this afternoon) he doesn't get enough sleep, even with the Melatonin we've added at bedtime. 

We are calling his GI doctor in the morning to discuss all these issues.  He has been on continuous feeds/Miralax/suppositories for two weeks now, and we should have seen results.  Levi has been having these issues for two months now, ever since a few days after the surgery.  He's been in so much pain for so long, but he's a little trooper and fights so hard!  Let's flood the gates of Heaven with prayers for Levi today!  Let's ask for healing of all that ails him.  Jesus sees all and knows the cause of what is hurting him, let's all pray that He fix the issue once and for all!  Levi needs all of you to petition for him today! The bible (Mt 18:20) states "For where two or three gather in my name, there am I with them.”  Thank you for joining us in praying for Levi!


Sunday, September 30, 2012

Two Steps Forward, One Step Back

It was so nice to be home Friday night!  Mom had the house cleaned and decorated with Fall items, Levi was feeling good, and I was optimistic.  Saturday morning started out great but quickly went downhill.  Levi woke up in a good mood, content to lay in his own bed and hang out for a while.  I shared a short phone call with my daughter, who was in the hospital about to have a new baby, and went back in to get Levi only to find he had vomited.  Over the course of the day he threw up three times, had a couple screaming fits, and just felt awful in general. We cuddled with him and did the best we could to help him feel better.

On a brighter note, he slept all night last night, and pooped so loud this morning he woke us up.  A sweeter sound was never heard!  He seems to feel pretty good now.  I'm praying we take more steps in the right direction so he can feel happy again.  :)

Friday, September 28, 2012

Going Home!!

Well today the waiting game has ended.  It's been a few days since Levi has pooped, and that's all we were waiting for to be discharged.  I was concerned this morning because he starting exhibiting signs that he would begin throwing up sometime today.  It's been a vicious cycle of no pooping and throwing up.  So they decided to give him an enema and then possibly discharge.  When the nurses put him in bed to do it, though, they found he had already overfilled his diaper all on his own!  Even better, it wasn't the pure liquid that it's been for the last month or so, but pasty.  (I know this might be gross to some, but all you moms out there will understand.)  So now they are working on discharging us.  Praise GOD!!

This is the first day in a very long time that he has been content to be on his own without being held.  He's been hanging out on top of fluffy pillows in the hospital wagon all day.   After his big poop he's been grinning ear to ear, and I can tell he feels so much better already!  The plan for action to eradicate the ileus in his intestines is simply to remain giving 24 hour continuous feeds at 1 ounce an hour for a couple weeks, along with Miralax twice a day, and a suppository once a day.  We will see his regular GI doctor in a week or so and see where we stand at that point, and if we can begin giving smaller bolus feeds. I'm thankful that this plan has worked to "wake up" his bowels, and that we didn't have to resort to more medication. 

As far as the feeding tube button goes, I'm still not thrilled.  It looked wonderful the day after the nurse cauterized it, but already the granulization is growing again and leaking bright pink fluid.  This is a battle I do not want to fight, but I just don't have a choice.  I do have the option of just letting Mom take care of it, but I just don't like to give up like that.  The surgery nurse, Grace (an angel sent straight from Heaven), told me not to think about it so much.  She said it might do this for a while, but it doesn't hurt him and it's ok.  I just have to keep reminding myself of that.

I'm thankful that Jesus has yet again brought us through a very trying, stressful time and is healing Levi again as he has numerous times before.  I just don't know how I could have gone through everything in the last 20 months without my faith.  And a huge thanks to everyone who has been supporting us and praying!


Wednesday, September 26, 2012

Holy Crap!

Levi filled his diaper (and his bed!) with a huge bowel movement again last night.  At least we know we are on the right track.  He slept all night again, and woke up with smiles. 

Yesterday he had another tummy x-ray to see if anything had changed.  It was pretty much the same.  He may need to have a bowel cleansing, but as of right now there are no set plans. 

We had a surprise visit from my sister Casey and her little ones Faithie and Jackson, and Shelly stopped by the day before.  It's so nice to hang out with family and have a relief from the boredom of sitting in the same room all day.  I have to thank God for technology!  My laptop has made this stay much more tolerable. lol

I don't have anything else to report at this time.  It's a waiting game, but that's alright.  At least I know this time they will make sure the issue is resolved before we go back home, and that gives me peace.  Thanks again for all the prayers.  We can feel them!  God is working in our lives, and I know that all the prayers being sent up for us have strengthened us.  We pray blessings on all of you as well!

Levi in the pool over the summer :)


Tuesday, September 25, 2012

Hospital Update

Levi had been screaming more and more on Sunday, still no bowel movement, and the area around the feeding tube button looked horrendous.  It was bright pink, oozing colors from tan to bright pink.  We had cauterized the tissue Saturday morning, but that afternoon it was bright pink again and had grown.  Same thing happened on Sunday.  I had had enough.  It was time to go to the ER again.  I was actually hoping that he would be admitted so they would figure out what was going on with his belly, and the nurses could take care of the button for me while the tissue healed.  I mean look, I am NOT a nurse, I never wanted to be a nurse, in fact I emphatically did NOT want to be a nurse.  Now to have to do these things to my own child has been extremely stressful for me.  I had reached my breaking point.

In the ER we went through the normal workup for Levi, which involves x-rays of tummy due to GI issues, ct scan of the head and x-rays of chest and belly to check the VP shunt, bloodwork, and they even performed a ct scan of his belly to get a better look.  The x-rays showed that he has an ileus (a blockage of the intestines due to the lack of movement of the intestinal muscles).  This is concerning to us because when we were in the hospital five weeks ago, supposedly due to gastroenteritis, he had an ileus.  So basically his bowels have not been working for five weeks!  He has not even been passing gas.  Now we (Patrick and I) think the entire issue over the past month and a half is due to the ileus, which can be caused by surgery or trauma, and that he probably never had gastroenteritis.  I'm pretty frustrated by that fact, because Levi has been in pain all this time, and we have all been stressed to the breaking point trying to figure out why, when the problem was staring us in the face the whole time!

The doctors explained that we have several option to try to get the bowels working again.  Thank God!  Let me tell you, hearing that your child's bowels have basically shut down is not easy to take!  The first course of action would be to put him on continuous feeds, and give one suppository a day.  That should wake up the bowels and get them moving.  I was skeptical, but last night Levi had a huge bowel movement all over his bed!  This morning he woke up with smiles and has been content to lay in bed and entertain himself.  He has not done this since before he got sick weeks ago.  I think that's a great sign!  His belly is still distended and full due to so much air in the bowels.  I don't know yet what the course of action is for today, but so far things are looking up.  Thank you all for the prayers, and please keep them coming!! 

Saturday, September 22, 2012

Still Having Issues

So the Upper GI and small bowel series tests came back normal, thank God!  Levi was very happy the day of the testing and we were hopeful that the worst was behind us.  It was, but his recovery from the gastroenteritis has been slow at times.  He has had good days followed by bad.  He's still having bowel issues.  His tummy grumbles all the time, and he's taking Miralax twice a day, but with no results.  We have had to resort to using enemas when he goes four days without a dirty diaper.  This is painful for him, and add teething to that as well.  He still has the huge cyst on the right side of his mouth, but thankfully the one on the left side has burst, and he's actually cut his first molar!

Wednesday he had the G-tube switched to a button.  The button is a small device on his tummy which comes with a removable tube.  It's much, much easier to navigate and use than the old tube was.  He can have tub baths and swim now.  However, it's causing him a LOT of pain.  Some tissue, called granulization, has grown up around the tubing.  The nurse cauterized it with a silver nitrate stick.  Patrick and I had to cauterize it again this morning.  He's been crying for the better part of the last two days.  The button is bothering him so much that he was pushing against it so hard it was pulling out of his tummy.  Patrick wrapped it with an ace bandage so it would be more secure, and this must have made it feel better because he fell asleep and took a 3 hour nap. We had been alternating Tylenol and Advil every four hours, but he was still in so much pain that I contacted the surgeon in the hopes of receiving a prescription for something a little stronger.  He told us to alternate every two hours instead of four for a little while.  That has made Levi feel a bit better.

Hopefully tomorrow he will feel better.  I plan on calling the GI doctor Monday about the continued bowel issues.  We would greatly appreciate prayers for Levi!  Please pray for his pain to go away, for restful sleep, and if there is a larger problem, that it be brought to light!  Thanks for all your prayers!!

Levi's first nap in toddler bed  :)

Friday, September 7, 2012

GI Doctor Appointment

We met with Dr. Rosenblum today, Levi's GI doctor.  After I went over the details of the last three weeks, he agreed with me that something doesn't seem right.  He said it's possible that his body is just still trying to recover from the severe gastroenteritis, but he wants to do some tests to be sure nothing more serious is going on.  They scheduled us at Cardinal Glennon on Monday morning for an upper GI and bowel series.  He said, "Let's put some stuff down the tube and see where it goes."  I love this guy, he's funny and comforting all at the same time.

Yesterday I gave Levi pedialyte, and 1/2 Ketocal/1/2 water. He was able to keep everything down.  Today he has had full strength Ketocal and also kept it down.  I will start progressing from 2 ounces as he tolerates it.  I pray he doesn't have any more episodes of vomiting and that nothing is seriously wrong, and that the true problem is brought to light very soon!

Levi asleep in the gait trainer after working with Shawnery today :)

Wednesday, September 5, 2012

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!!

Friday, August 31, 2012

G-Tube and Gastroenteritis

The past two weeks have been very difficult for us.  On the 13th, a Monday, Levi had the G-tube placement surgery, which went very well.  We were able to go home from the hospital the very next day.  On Friday night after our bible study meeting, we headed to Walmart to pick Miranda up from work when we were hit by a car in the next lane.  It wasn't at a high speed, and thankfully no one was hurt, but the side of our van was smashed in, and the other driver did not stop.  Frustrating!  The next day Levi vomited with his noon feeding, and things went downhill from there.  He screamed the rest of the day, vomited a few more times, and then choked during one episode and scared me so badly I called 911.  We were taken to Cardinal Glennon ER, had the usual x-rays and labs, and were told he was backed up.  They gave him an enema and told us to give him one a day for a day or so.  We did that for two days and figured his system was cleaned out and things would get better.  No such luck.  He was still vomiting and screaming in pain.  All this time I was concerned that the accident, although minor, had somehow jostled the g-tube and hurt him.  So off we went to Cardinal Glennon again on Tuesday, where we were admitted because he was a bit dehydrated.  He was given nothing in his tummy that entire day.  In fact, they didn't even want meds given through the tube so switched to IV forms.  The Clobazam (Onfi) he is on does not have an IV form, so they gave him Ativan instead.  Well, he woke up in the middle of the night with at least double seizures and his eyes would roll downward.  He has done this before with other seizure meds, so I wouldn't allow any more Ativan.  That really drugged him, poor little guy!  He's usually awake by 6:00, and he slept in all the way to 11! He screamed off and on all day, which I attributed to crankiness from being sleepy from Ativan.  We were going to go home after an evening feed if he kept it all down.  Well, during the feed I forgot he was hooked up, and tried to change positions and the tube came apart from the bag.  Levi started screaming and gagging.  I definitely flipped out.  I was sure I had yanked the entire tube right out of his tummy!  Thankfully all was well, I hadn't even ripped the suture holding it in place.  We continued the feed, and he vomited right after. So we stayed another night and went home the next evening.  All throughout the hospital stay Levi had been thoroughly examined by all the teams of doctors (surgery, GI, neurology, and the general floor team) and the consensus was that he had gastroenteritis.  Basically a flu bug that inflames the intestines.  It's very painful and can last up to two weeks.  On top of all this, Levi has not been sleeping through the night for weeks.  I think this is more due to medicine weans than anything else, but it has made a bad situation even worse.  We talked to the neurologist and he agreed that a small dose of melatonin as needed for sleep is a good idea.

As I write this, it has been exactly two weeks since the onset of symptoms.  Last night he slept all night and woke up with smiles. He has tolerated feeds and has had no signs of gagging.  We are praying that this bug has finally gone away for good!!

Monday, August 13, 2012

Surgery Went Well!

The surgery to place a G-tube this afternoon went very well.  We expected Levi to sleep most of the day, but really should have known better.  Levi, like most 20 month old babies, does not care for the word nap. lol  He woke up a few hours after surgery and seemed fairly comfortable, especially once I was able to hold him.  He has had two rounds of Tylenol and one small dose of morphine.  There again, we expected the morphine to help him fall alseep for the night, but he woke up after about an hour.  He's resting comfortably in the crib right now, on the very verge of sleep.  The tube does not seem near as creepy or frightening as I expected.  I am a little nervous with holding him, and changing positions, because I don't want to jostle his tummy and hurt him, but so far so good.  The nurse said I can put him in any position as long as he tolerates it well.  We tried his favorite position, facing me with his head on my shoulder, but I just felt too uneasy to keep him there for long.  Hopefully he will get a good night's sleep, feel better in the morning, and we will come home tomorrow. 

Sunday, August 12, 2012

G-Tube Surgery in the Morning

We will be heading out to Cardinal Glennon in the morning for the G-tube surgery.  Please keep Levi in your prayers!  

Friday, August 10, 2012

Feeling Much Better

For about six weeks before receiving the ng tube, Levi had been sick or in pain most of the time with teething, dehydration, etc.  For weeks I could not put him down, he wanted to be held all the time, wanted nothing to do with the toy gym or lightbox that he had loved.  Almost immediately after having the tube, he began to feel better.  Smiles were more common, he would tolerate laying down on his own for short periods of time.  Now I can't believe the change in him, and I'm so grateful!  He's happy all the time!  Not only has he gone back to playing with toys as he did before, but he's progressed to moving his legs in the attempt to crawl, getting up on his elbows, standing in the gait trainer, and even more. We've spent a lot of time outside enjoying the summer. Even better, the seizures remain much lower, and are only lasting under 5 seconds.  It's truly amazing!

We had a surgery consult at Cardinal Glennon with Dr. Vane Wednesday.  He was pleased, and seemed a bit surprised, to hear that Levi is up to goal feeding (6 ounces 4 times a day) with no reflux or vomiting issues.  He said because of this, it will not be necessary to perform the Fundoplication (a procedure in which they modify the stomach to prevent reflux)!  That is wonderful news!  It is still very possible that the reflux will go away at some point, probably when he is more mobile.  Until then Nexium is controlling it well.  We go in Monday morning for the G-tube surgery and should only be admitted for an overnight stay.  I sure will be glad to have all that tape off his poor little face!  Please pray for a smooth surgery with no complications and quick recovery.

Monday, July 30, 2012

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.

Sunday, July 29, 2012

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!

Thursday, July 26, 2012

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.

Wednesday, July 25, 2012

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

Wednesday, July 18, 2012

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 :)

Sunday, July 1, 2012

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!

Tuesday, June 26, 2012

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!

Friday, June 22, 2012

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!