Wonderful News!

I am so happy to report that Levi pooped today, all on his own!  No enema, no suppository!  He was due for an enema this evening, and I've been dreading it all day, but lo and behold he did it all himself!  Good boy!  I can't tell you how relieved I am!  He's pretty happy about it, too.  He's been grinning from ear to ear.

We found out yesterday that his carnitine levels are low.  He will be taking nearly 1000 miligrams of a carnitine supplement, which sounds substantial to me.  As I've researched I've found that carnitine deficiency can cause other issues that Levi has faced over the last several months (low intestinal motility, lack of appetite, complete loss of appetite, weak muscles) and I'm hoping that this will go a long way towards making him feel better.  We could surely use prayer in this area!

A Good Few Days

Since we have gotten home from the hospital Levi has been doing pretty well.  His tummy no longer gurgles and grumbles all day since we stopped Miralax.  That is a huge improvement in itself!  The Milk of Magnesia has not yet worked, but we gave him the Dulcolax suppository on Sunday and he was covered in poop up to his neck.  The best part about this is that it did not hurt him at all!  Lately the enemas make him scream, and even though we know it's best that he have them, it's hard to make him go through that.  Unfortunately we can't give the Dulcolax more than once a week because it's habit forming.  Hopefully it will help wake up the colon and it will start working on its own.

Levi has been sleeping all night again!  Hallelejuh!  I can't remember when I've gotten this much sleep, or felt this good.  He is still so tired, and I'm not sure if that's just due to the hospital stay, teething, or what's going on.  He also is still having episodes where he throws his arms out (like a newborn's fear of falling) and cries.  I'm not sure what's causing this, either.  BUT he's been full of smiles today and a little more active.  He sat in his highchair and we played with a light up musical toy.  He paid  a lot of attention. 

Patrick, Mom, and I have decided to fast and pray for him again.  We have gotten wonderful results in the past.  Our God is SO good!  We welcome anyone who wants to join us.

I scheduled his follow up swallow study for next month.  I'd like to ask for prayer for this as well.  The last swallow study showed that food and liquid pooled at the back of his throat, putting him at risk for aspiration.  That is the reason he has the G-tube.  We are hoping that the study will show that he can swallow successfully.  I'm excited to start giving him small snacks and teaching him that food is yummy!

 

Home Now

Levi has been feeling much better since the enema.  He tolerated the feed very well, and we came home last night.  He actually slept all night!  I can't remember the last time he did that.  Today he's been happy and content. 

The new plan is Milk of Magnesia once a day.  If he doesn't have a bowel movement in 3 days we will try a Dulcolax suppository.  This is a stimulant laxative, and the hope is that it will wake up the colon and help it work on its own.  It's habit forming, though, so can only be given once a week.  If needed, we will use enemas in between Dulcolax.

The lab tests showed that Levi's magnesium level is a bit high, so we are giving MOM once a day instead of the original twice daily dose.  The dietitian ordered a lipid panel to check cholesterol, etc, that can be elevated due to the Ketogenic diet.  His ldl level was slightly high (113 and they like to see under 100), but Jamie said everything looks excellent for being this far into the diet.  They are also checking his carnitine levels.  It is common for kids on the diet to need a carnitine supplement. I was researching symptoms of carnitine deficiency and interestingly enough one of the symptoms is low motility of the colon, exactly what is going on with Levi.  If he does have a deficiency that might explain why it's taken so long for his bowels to rebound after the surgery.  We should have the results on Monday.    

 

Successful Day

So the enema was a success, thank God!  It was painful for him, and we're not entirely sure why it bothers him so much now when he didn't mind at all before, but at least it worked.  Afterward he took a nice nap, and he's been comfortable for most of the evening.  He's in bed now, looking around, but his eyes are getting droopy.  It's so nice to see him feeling better!  We will start  his feeds sometime tomorrow, and as long as that goes well (and I have every reason to believe it will) then we can go home. 

Our son Tommy and his girlfriend Kori came to visit us.  We had a wonderful time chatting and catching up with them.  It was great just to be able to relax and enjoy their company for a while!

Tommy, Kori, and Levi in February 2011

Plan for the Day

We saw the attending GI physician this morning.  At first I was unhappy with what he had to say, but I've come to realize it's not so bad.  He believes that the blood Levi vomited was due to irritation at the G-button site.  That makes sense, and was actually what Patrick expected.  He went on to say that we will basically continue the plan that we have implemented at home with laxatives and enemas to help Levi empty his colon, with maybe some tweaks along the way.  He said that although they don't have any plan of action that will fix the problems right away, Levi is NOT in any danger.  I didn't realize how badly I needed to hear that!  I've reassured myself, but hearing it from the doctor took that thought out of the back of my mind. 

Levi just had a rectal exam in the hopes of stimulating him into going on his own.  If that fails, this afternoon they will give him an enema.  If that fails, they will use a rectal tube and saline flush to clean him out.  After that has been accomplished and he's tolerating feeds, we can go home.  Hopefully that will happen tomorrow.  He has had waves of pain and cramping today, but periods of smiling as well. 

I just have to remember that although this is something we have dealt with for a long time, and will deal with for a while longer, it is fixable. I need to be patient and rely on God.  After all, His timing is perfect!   

In the Hospital Again

So as you know Levi's tummy troubles have continued on, so far with no answers or solutions.  On Monday we had an appointment with Dr. Rosenblum, his GI doctor, and decided to discontinue Miralax and begin Milk of Magnesia, with an enema every 3 days if he hasn't had a bowel  movement.  Yesterday we gave him an enema that yielded no results.  The enema itself didn't even come back out, let alone any stool.  This morning he retched and vomited watery red blood.  Not blood tinged formula, just blood.  This frightened me enough to rush right over to Cardinal Glennon.  He is receiving IV fluids with no feeds today.  I was told the x-ray showed an impaction.  This is new.  Usually all the x-ray shows is a lot of fluid in the intestines.   We haven't seen the attending GI doctor, and don't expect to until the morning.  Levi was smiling and pretty happy considering everything he's going through, until it came time to start the IV.  It took four tries before they found a good vein.  He's such a trooper!  He smiled through the entire first stick, but when they scrubbed his other hand he knew what was coming and threw a fit!  Poor little guy!  He's been uncomfortable since then.  Right now he's resting in bed, drifting in and out of sleep. 

Please God, just show the doctors what the problem is and how to fix it!!!  Levi has been dealing with these issues for five months now.  Please pray for breakthrough, answers, and solutions!!

 

Tummy Troubles Continue

Levi has not had a bowel movement on his own (without an enema) since December 9.  I feel like we are back to square one.  I've tried administering Miralax in different ways, at different times of the day, in various amounts of water, but to no avail.  It doesn't seem to be working at all anymore.  In fact, it seems to only make his tummy grumble painfully and promote gas pains that make him scream until we vent his tube.  By this time he is so exhausted he takes a long nap. 

The new frightened/pained screaming that I mentioned in an earlier post has continued, sometimes very frequently.  I've been watching him closely and believe that it is in response to pain.  Most often just after he cries in that manner his tummy grumbles.  And I don't mean it grumbles like he's a little hungry.  It grumbles as if a storm is brewing inside his intestines.  You can hear it, see it, and feel it.  But it doesn't resolve with a bowel movement.

The poor little guy squirms around in some level of discomfort most of the day.  We are back to holding him most of the day because he doesn't feel well. 

I tried to call the GI doctor yesterday but unfortunately they were closed for the holiday.  I will call him first thing in the morning and let him know all this new information.  I'm hoping to throw away what we have been doing so far and begin a new plan.  I'd like to try a stimulant laxative.  We'll see what the doctor says.  In the meantime he can use all the prayer you can send his way.  Something has to be done, he's been going through this since August!!  Thanks in advance for praying for Levi!!

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.

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

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.