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.

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 :)

 

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!

 

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!

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!

 

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!

 

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!

 

Update

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 :)