Recent Events

For about a week after Levi's Nexium dose was doubled, the breathing issues improved drastically and the vomiting stopped.  Since we had just started Pulmicort treatments through the nebulizer, I decided to stop these so we would know if the breathing problems had been caused by extreme reflux or not.  After a week, both the breathing and vomiting issues returned.  We restarted Pulmicort two weeks ago, and so far it has had no effect.  Thankfully, his oxygen has maintained in the mid to high 90's.

We saw our GI doctor yesterday concerning the vomiting.  I haven't been able to get all of his feeds into him since he started vomiting weeks ago.  I've tried many different feeding schedules, but he just doesn't seem to be able to handle the volume he's supposed to have.  He's even throwing up near the end of his overnight feeds, which are given at a very slow rate.  So, I have just been giving him what he can take.  I think it's better for him to receive less than he's supposed to have, than for him to be throwing up every day as I try to over fill his tummy.  I've researched online and tried so hard to find a solution on my own.  I have two theories, both of which the doctor agreed were plausible.   1.) Nexium is no longer working.  2.) Delayed gastric emptying has returned, causing his stomach to retain a large portion of the feeds.  Dr. Rosenblum said Levi is on such a high dose of Nexium that it should be working great, but if his stomach isn't emptying, it may not be getting absorbed by the body.  First and foremost he'd like Levi to have a chest x-ray to rule out pneumonia, and maybe a bronchoscopy.  (He's had several chest x-rays for that reason, but the last was 3 weeks ago.)  Once he feels confident that a respiratory problem is not causing the vomiting, he will send Levi for another gastric emptying test and an upper GI with small bowel follow through.  In the meantime, I'm trying to get some stomach ph strips so I can see if his stomach is acidic, and before each feed I am to pull out stomach contents into a syringe to see what he is retaining.  If he is indeed still full, I'm to throw away what I pull out and give a fresh feed.  I'm very interested to see what I'm going to find today when I do this for the first time.

We've also restarted Neurontin.  Levi was constantly cranky with many periods of screaming.  Almost immediately after the first pill, he took a nap and woke up happy.  We've since increased to 3 doses a day.  Here are some cute pics of our little guy.

Asleep on the floor while we ate at Kobe's.

Does this look comfy??  Time for a twin bed!

Chillaxin'

Riding my trike!

SO much fun!!

Hospital Update

So for the past few weeks, Levi has been dealing with difficulty breathing, persistent low grade fever, and vomiting old blood.  He had one of the worst screaming fits I've ever seen on Friday, and we brought him into the ER again.  He had Toradol, which always takes away his pain, even after surgery, and it didn't even dim the pain, then Benadryl as well, which works well to relax him and help him sleep, and it didn't help either.  He was admitted and I fought with the GI resident so he could have morphine.  (GI docs don't like to give narcotics because it slows down the intestinal tract, but when pain is an issue, it has to be top priority!)  They wanted to give him Ativan instead, but I flat refused.  He had that once before, and it caused a long period of seizures.  The first dose of morphine also needed a Benadryl chaser, but it actually made him comfortable and he was able to sleep.  They sent him to x-ray for a full body scan to make sure he hadn't fractured a bone, and also the normal workup of obstruction series and shunt series, as well as bloodwork.  Everything came back normal.  His amylase was high, which points to pancreatitis, but they repeated the test twice and it was normal both times.

Neurosurgery and neurology were consulted to be sure that the shunt and seizures were not to blame.  Both of these teams feel confident that this is not the case.  An EEG was performed and the results were pretty much the same as the last one over a year ago. He's seemed to have a returning of some reflux symptoms, so they tested his stomach ph, and sure enough it was very acidic, so they doubled his dose of Nexium.  Severe reflux can actually cause all the symptoms he's been having, so I'm praying that this is our answer.

In the last week the only food he's had is about 24 hours of continuous half strength formula.  Some days he even had a hard time keeping down the Pedialyte.  Our dietitian has increased his calories again, and he was started on feeds at 15 ml an hour a couple hours ago.  He's thrown up twice since, but also twice this morning, so I don't think it is related to feeds.  His vomiting during this whole illness has been random, not correlating with feeding, so I do feel confident that it is not the diet or an intolerance to the formula. 

He's comfy and sleeping right now.  We may be able to go home tomorrow, depending on how he tolerates the feeds, and if he's not having pain.  Please pray with us that the new dose of Nexium is the answer we've been looking for.  I want to take him out to play in the pool, and go for walks, to the park, church, and have fun with him.  I want him to feel good again.  Life may never be "normal" for us, only in the sense that we are not like everyone else, but it can still be wonderful.  That's what I want for him.  Wonderful.

Mystery Symptoms

For the past couple weeks, Levi has had a return of noisy breathing that escalated into difficulty breathing, as well as vomiting old blood and persistent low grade fever up to 100.2, and other lesser symptoms.  So we saw the pediatrician, ENT, and had a couple visits to the ER, as updated in my previous post.  The Sunday before last we took Levi for an overnight sleep study.  It wasn't bad except he wasn't allowed to sleep on his stomach, his preferred position.  It took a couple hours for him to fall into a good sleep, but he slept for a continuous five hours.  It will take a few weeks to receive the results.

Monday morning on the way home from the sleep study, he vomited old brown blood, so I called the GI doctor.  He assumed that Levi had a virus and admitted us for IV Nexium to help settle his tummy and IV fluids.  During this time, he had breathing treatments, which helped for a couple days, but did not completely clear the breathing.  We stopped his feeds for a couple days, then increased them slowly until we were at our normal home rate.  On Friday we came home better, but his breathing was still noisy and a bit labored.

Saturday morning he began having difficulty again, and we wondered if maybe he was having allergies to something in the air, or in the house.  Ever on the quest for answers, I looked back at the blog and realized that the first symptoms appeared within 24-48 hours of starting Neurontin.  I looked up side effects and sure enough vomiting blood, fever, and difficulty breathing were listed, and can even be a sign of an allergic reaction to the drug.  I stopped giving him the morning dose, and am waiting to hear from the neurologist to see how long I have to continue his evening dose.  This is also a seizure med, and even though that is not what he's taking it for, it cannot just be stopped all at once, or it could cause seizures.  My plan is to take him off Neurontin and see if these symptoms clear up, and also what his overall mood is.  I want to know if he is having a reaction, but also if it has actually helped him, or if he was just getting better anyway.  This morning he vomited again with "coffee grounds" in it, which is old blood.  I'm hoping this does the trick, and all these issues go away.

Thanks so much for your continued prayers!

Sleep Study

Snuggling :)

Looking up!

ER Update

Tuesday we went to the ENT clinic for breathing issues, but when they sprayed a decongestant/numbing solution in his nose he immediately filled with phlegm, couldn't breathe, and his oxygen saturation dropped drastically, so they put him on oxygen and took him to the ER.  A chest x-ray was normal, he received a breathing treatment, and we were told to return to the ENT clinic the next day.

Wednesday morning Levi woke up screaming.  I was shocked to find that his diaper was completely full of stool.  I didn't think this could happen with a colostomy. He threw up just after I changed him, and the vomit contained "coffee grounds", which is old blood.  He hasn't done this since the colostomy was placed two months ago.  So off we went to the ER.  The vomit tested positive for blood.  An x-ray of his belly was normal.  The surgery team said that having a bowel movement was not uncommon because they don't cleanse the colon when they perform the colostomy.  The stool was leftover from before the surgery.  The bloody vomit may have been caused by reflux, but he's on Nexium, so it's doubtful.  It may just be a virus.

In the ENT clinic, the doctor put a scope down his nose.  He said the adenoids and tonsils are slightly larger than normal, but not enough that he thought it would cause problems.  He prescribed two nasal sprays, one containing steroids, and will schedule him for a sleep study within the next week, I think to rule out sleep apnea.  Again, hopefully this was all just caused by a virus.  The nasal spray immediately made a difference in his breathing, and he was much more comfortable.  He's still gaggy, but I'm hoping he feels better today.  Thank you to everyone who has been praying for him!

Bluegrass Fun

Yesterday was a wonderful, activity packed day!  In the morning Patrick, Levi and I went to yard sales with Misty, Raven, and Kylynne.  This is one of my favorite things to do.  The weather was perfect, and even though we didn't pick up any amazing deals, we had a great time!

We spent a lovely afternoon and evening with Misty and Mom at the Bluegrass Festival to benefit the Senior Services Plus Meals on Wheels program.  It was supposed to be held down at the amphitheater on the riverfront, but of course with the flooding that was impossible, so it was held in the Mall parking lot.  The weather continued to be beautiful!  After a long nap, Levi was happy too.  He enjoys being outside and loves music, so the combination was terrific for him.  Marty Raybon (from the country music group Shenendoah) spoke to Levi from stage, calling him "sugar britches".  The Harman family always puts on an amazing show, and last night was no different.  They were definitely in top form, even though their dad just had a heart attack and couldn't perform with them.  He's in the hospital awaiting, I believe, more testing and a surgery.  Please join us in praying for complete healing for Mike Harman!

Here are a few pics of the day.

Harman Family

Chillin!

Marty Raybon

Aunt Misty

First Dose of Neurontin (Gabapentin)

Today was Levi's first dose of Neurontin.  He is on 300 mg in the morning for five days, then 300 mg twice a day thereafter.  Almost immediately he fell asleep.  He woke up about an hour later, and I was able to give him a tub bath, change his colostomy bag, and get him dressed without the slightest fussing.  Usually he screams at the top of his lungs the entire time.  We've just finished, and he's sleeping again.  I'm glad he's so relaxed and feeling good, but I do hope this extreme sedative effect goes away once he gets used to it.  Here are a few pics I took after his bath.

Many Changes and Feeling Better

Levi is finally starting to feel better again!  The last few mornings he woke up with smiles.  He's enjoying all the activities he liked before the colostomy surgery -- bouncing, playing with his legs and arms, watching TV, sitting outside -- which was nearly two months ago now.  So it's been two months since he's been happy, and ten months since the feeding tube surgery when all the horrible GI issues (vomiting, unable to have bowel movements, etc) began.  I am so glad he doesn't have any surgeries coming up!

The motility specialist from Cincinnati recommended trying Neurontin, and after our GI and neurologist conferred, they decided to prescribe it.  He should be starting it today or tomorrow.  I'm looking forward to it.  Even though he's feeling better, he still has episodes of pain, and we are hoping that since the motility issues are neurological, this med will help him to feel better.  There's just no real way to tell if he is feeling pain from this or not, but I believe he is.

He is also having more seizures.  They are still only lasting 1-3 seconds, and since he's cutting so many teeth I wasn't too concerned, considering pain of any kind can lower the threshold for seizures.  I was reading on the ketogenic website forum, and learned that teething can actually lower the ketones.  He has always maintained large ketones so I rarely check, but sure enough he has had low to moderate ketones.  I spoke with the dietitian and we decided to raise his ratio to 4:1, and also raise his calories.  He hasn't vomited in two months, but still was not putting on much weight.  He is at 0 percentile, but on the bright side his BMI is 9, and it was in the negative before.  He's been tolerating the new recipe very well, and we wonder if the extra nutrition is part of the reason for his happiness.  Already we are noticing that his cheeks, arms, and legs are getting pudgier.  He's so much more solid now, too.  Yesterday he was holding his head and trunk remarkably well!

The last time I changed his colostomy bag I found that the stoma had shrunk to about half the size it was when the bag was placed.  The exposed skin had an angry rash and had completely broken down over a large portion.  It looked so painful I wanted to cry for him!  The fix for this a product called stoma powder, which is sprinkled over the raw area, then patted with a wet spongy stoma care wipe that creates a seal over the powder.  I caked on three layers before placing a new bag, and he felt better almost immediately.  I'll be changing it again tonight and hope to see that it's completely healed.

Levi's sweet happy smiles!

Results from Cincinnati

I wish I could say that we received clear answers and a solution from Dr. Kaul and the motility testing in Cincinnati, but we didn't.  The report showed subtle neuropathic changes in the upper GI.  Subtle.  This is both reassuring and confusing.  If he has only subtle motility issues, then why hasn't he been able to have bowel movements?  If the problem is in the upper GI, why does the colostomy work so well?  If his lower GI works normally, then why did it take him eight hours to void an enema?  It's confusing.

Dr. Kaul's suggestion was to try a medication called Neurontin, a neurological medication.  I don't know if I would be able to tell if it helped with motility, considering he has the colostomy, but if he's having any pain from the intestines, then Neurontin may be able to help.  He's been so crabby since the surgery, it would be nice to have something alleviate that for him.  Dr. Rosenblum, our regular GI doctor, is consulting with our neurologist before before making a final decision. 

Dr. Rosenblum suggested keeping the colostomy for about a year before trying to reconnect.  He's hoping that will give Levi time to mature neurologically and cure the motility issue.  We also have the option of taking out a portion of the colon when we reconnect.  I guess we will just have to wait and see what happens. 

It's clear to me now (or it should be!) that I can't figure this out on my own, and that we have pursued all the testing that's out there for this type of issue.  Maybe now I can do what I should have done from the beginning -- trust God. 

Happy picture taken in March :)  Looking forward to seeing those toothy grins again!

 

Blessings Within the Trials

It's been five weeks since the colostomy surgery, and Levi is just starting to smile again.  The last several weeks have been a nightmare of screaming, ER visits, trying to figure out what is hurting him, and what will ease the pain.  He has a prescription of Oxycodone that I use sparingly, but when Tylenol and Advil don't work, I have no choice.  Over the last few days, he has been feeling better.  When he screams now I just go straight to a half dose of Oxycodone, which takes away the pain quickly and usually lasts the whole day.  He has graced us with a few precious smiles, he is beginning to enjoy being bounced and played with again, and looking at and holding his toys.

I have received preliminary results from Cincinnati, which showed that a portion of his colon works normally, while another portion is weak, and yet another is inconsistent and "misfires".  They say it has to do with the brain/gut connection.  All the results have been sent to our GI, Dr. Rosenblum, and we meet with him on Tuesday to discuss options.

Even through the darkest times lately, we have seen some great blessings.  Levi has not vomited since the colostomy was placed, and he is actually gaining weight now.  He has never cared for pacifiers, last summer he quit taking the bottle and lost the sucking reflex altogether.  A couple weeks ago he began sucking on my arm, which was such a surprise it took me several days to even think of trying a pacifier.  He took it!  He couldn't keep it in his mouth on his own at first, but now he can use the larger ones on his own for a very short period of time.  Even better, he's sucking on his hand now, something that he has never done before.  The big deal about this is that for the first time he's showing hand to mouth coordination!  It always astonishes me when, in the toughest of hardships, a bright light shines through the darkness.  But isn't that exactly what Jesus is?  So why would I be surprised?  I guess sometimes it's easy to get so wrapped up in the trouble and despair that I forget who is ultimately in charge.  I feel like it's those times the Lord shows me that he has everything under control.  There will always be a light shining in the darkness, and it grows larger and larger until the darkness is completely eradicated.  Jesus, pure and simple.  As my little nephew once said, "Thank God for Jesus!"

Our Stay at Cincinnati Children's Hospital

I just have to start by saying the entire staff was exceptional.  Meeting Dr. Kaul and his nurse, Jackie, is something I will never forget.  We've spent the last nine months trying to figure out what's wrong with Levi's bowels, and most difficult, trying to manage his pain, sometimes failing miserably.  I was excited to get to Cincinnati and meet the motility team, but they far exceeded my expectations.  It was immediately apparent that they love what they do.  When we met them in clinic, I was nervous, but the moment they stepped into the room I not only felt completely at ease, it was also an enjoyable experience.  They listened to me and understood everything I was saying.  I didn't have to keep repeating the same thing.  I didn't feel like an overly paranoid mom.  When I left that office, I felt better than I had in a very long time.  What an answered prayer!

The first two days Levi had outpatient testing which included a gastric emptying test that showed his stomach empties slowly, and a barium enema that normally would last around an hour, but kept us there for four, and it took him eight hours to eventually void it.  I was not surprised by this, considering how difficult enemas had become for him and that's the reason we stopped giving them. Wednesday we went inpatient so he could have the IV placed and get ready for the procedures the next day.  Levi was admitted to the neurosciences/trauma floor, which I thought was odd, but I guess the GI floor was full and he was placed there because of seizures and the Ketogenic diet.

Thursday afternoon he was taken to surgery where they performed a colonoscopy with biopsies, endoscopy, placement of manometry tubing, and more.  The poor little guy  had tubes coming from his rectum, g-tube opening, and stoma.  It was difficult to hold him, and he had to remain in bed for the testing, so Jackie suggested an adult bed for him so we could lay with him.  That was much better!  The tube that protruded from his stoma was sutured to the plastic on the colostomy bag so that it wouldn't come out, so that made it difficult to close the pouch.  The poor nurses on our floor had no idea what to do with it, and so we were moved to the GI floor.  They must have just had a room open up, because we had to wait a long time while it was being cleaned.  Levi was screaming in pain off and on, he couldn't have any pain medication other than Tylenol, and he could have nothing in his stomach.  We waited a very long time for IV Tylenol because it had carbs, which is contraindicated for the Ketogenic diet.  I was so angry I yelled at the poor doctor.  I definitely would rather a few breakthrough seizures than leaving him in pain. In her defense, the last time she'd seen him he was sleeping, and she was trying to find something to manage his pain without causing problems with the diet.  At this time we finally moved down to the GI floor.  It was as if Levi knew they were experienced that this sort of thing, and would take care of him.  His nurse, Jenette, started talking softly to him and set him at ease.  He relaxed and fell asleep, and he still hadn't had Tylenol yet!  She and the PCA worked for a long time modifying ostomy bags to fit around the tubes so the leaking would be minimized.  What a sweetheart she was!  We loved her immediately! The rest of the night went fairly well, with a bit of fussing off an on.

Friday was the big day!  Jackie came in bright and early, bringing sunshine and happiness with her.  She hooked his tubes up to a computer.  It was interesting to see that the readout looked somewhat like an EEG.  The testing took all day, since they were testing three different areas.  At one point, she gave him an eight ounce feed over gravity that emptied pretty quickly.  Thirty minutes into the feed he gagged, and I was going to have it stopped, only to find out the bag was empty!  He took eight ounces in less than an hour!  This little guy has been on feeds of just over an ounce an hour for the last few months.  I was amazed and thrilled!  This means the return to bolus feeds (that I will start today) should go very well!  At the end of the day, when the testing was complete, Jackie pulled all the tubes out and we could see the relief on Levi's face.  That must have felt strange!  The stoma nurse, Anne, came in again with supplies.  She had shown us a different type of bag that I like so much more than what we were using!  Our GI nurse, Mindy, was outstanding!  The discharge papers were waiting for us as soon as the testing was done!  So we took our happy selves off to the Radisson and enjoyed a relaxing dinner.  Patrick came in about nine to pick us up.  We struck out for home after a lovely breakfast and were home that afternoon.

This trip was such a blessing!  I'd like to say a huge thanks to Dr. Kaul and Jackie, our nurses Jenette, Andy, Lindsey, and others whose names I can't recall, but whose faces and kindness I will never forget, and Dr. John and Dr. Maggie.  Now we wait for Dr. Kaul and Jackie to review the information and let us know what they find.  We will hear from them sometime this week.  I'm praying they find the exact cause, and that it's a simple procedure to fix!  Many thanks to all of you who are praying for Levi!!