Pneumatosis and Colostomy

This morning when the surgeons performed exploratory surgery, they found pneumatosis, a condition where air is inside a portion of the colon walls.  This must have seeped into his tummy, causing the air there, but thankfully there were no perforations, and the rest of his colon and intestines look great.  He does now have a colostomy, temporarily, to allow the damaged part of the colon to rest and heal, before reversing the surgery and praying that this will fix his bowel issues.  I don't currently know how long they plan to leave the colostomy on, but I should have that information soon. 

We were told that the pneumatosis is not the cause of the bowel issues he's had for the last eight months, that it's recent and very painful.  Patrick and I believe that the part of the colon affected has been sick and weak since the feeding tube surgery, and that it's just gotten worse.  We are hoping that once the colostomy is reversed, that will be an end to all the bowel troubles.  As for now, we feel that all the vomiting, bloating, distention, laxatives, motility meds, and suppositories will not be an issue because the stool will flow directly into the bag, and Levi's little body doesn't have to deal with it for a while.  I believe the extra seizures, though still very light, that he's been having are due to the GI problems, and will now resolve.  He has been so sick, and still finds time to be happy and learn and progress.  If the colostomy provides him with freedom from GI pain, then it's worth it.  I can't imagine how much happier he will be, and how much more he will learn and progress. 

Right now he is resting comfortably.  They have him on round the clock scheduled pain meds.  He actually looks much better now than he did before the surgery.  That ferocious frown is gone, and he looks relaxed instead.  Please continue to pray for his recovery and healing!

Emergency Surgery

Today was not a good day for Levi.  He woke up early throwing up.  I know, not too much off the norm for him, but he continued to feel poorly through the day.  He just needed to be held all day.  Around 3:30 he started screaming, and he didn't stop but for very short periods of time.  About 8:00 we decided to take him to Cardinal Glennon ER.  After the usual bout of testing, we were told that the surgery team would be coming down to talk to us.  Apparently the x-ray showed that there is gas in his belly, outside of the intestinal tract.  It could be from changing the button today, but it could be a torn colon, a problem with the appendix, or something similar.  The surgeons said they didn't know exactly what they would find and expect the surgery to take an hour and a half.

I guess I wasn't too horribly surprised about the surgery, considering what he's been through the last eight months, but I was surprised when I was told they would operate within the hour.  It's a scary thing to have your child readied for surgery spur of the moment like that, at 3:00 in the morning, and even more so when the realization sets in that almost the entire team of surgeons have been called in from home.

I have never seen Levi scream like today.  The poor little guy is hoarse and close to losing his voice.  Thankfully by the time they took him back to surgery he was at least feeling well enough to stop crying. 

Levi has traveled such a long, difficult road in his little lifetime.  We are praying that this surgery will uncover the reason for all his GI problems since the feeding tube surgery, and reveal answers.

First and foremost we pray for his safety, and ask that you all join us as well.  Thanks for sending love and prayers for Levi!

So Cute! Levi was rubbing his nose and cheek on this gel octopus :)

 

Video of Levi Learning to Balance in Gait Trainer

  

Levi has been so motivated and trying hard to learn control of his body.  The gait trainer that our physical therapist loaned us doesn't have a headrest, so we have used a piece of sturdy cardboard to keep him from throwing his head back too hard and hurting himself.  Recently I decided to let him try to go without it.  He's showing so much desire to hold his head and trunk himself!  His head still falls forward and back, but most times he catches it before falling too far.  He also doesn't fit as snugly without the cardboard, so he has to watch the rest of his body as well.  I think he's doing an excellent job! 

 



 

 

 

 

 

Contact with Cincinnati Children's Hospital

Today I received my first contact with Cincinnati Children's.  The lady I spoke with was super nice.  She explained that she would email me a list of medical records they would need, and after the doctor reviews them she will call me with an appointment.  I spoke with the Cardinal Glennon radiology department and they are mailing the records out in the morning.  I hope everything else goes that smoothly!  I know that they schedule based on medical needs, not first come, first served, so that is great.  We've been dealing with these issues for 8 months now, with countless trips to the ER and lengthy hospitalizations.  I'm praying we can get seen quickly!  At least at the  moment I feel that we are managing his symptoms in a more successful manner.

He was so cute today!  He had an excellent speech therapy session with Kathryn.  Later in the afternoon he was a bit fussy.  I thought he just wanted me to hold him, so I did while I was using the computer.  No, that wasn't good enough.  He wanted my undivided attention.  Once I started interacting with him, he was all smiles, holding his head up, etc.  Once he'd had enough, he settled down and took a tiny catnap on my lap.  He's also seemed bored in his normal spots like the feeder chair and having tummy time on the floor.  I put him in the gait trainer and he was having a great time.  His head control was very good, he actually set off his little flower toy several times, and he was generally happy.  Until Daddy got home.  Patrick didn't even make it into the living room but Levi knew he was home.  I was sitting next to him, and once he heard Patrick's voice he stood up, lifted his head up, and smiled one of the biggest smiles I've seen from him.  If he could have jumped up and down, he would have :)  It was a great day!  At bathtime he decided to scream for an hour, but I think the day had just caught up with him, and he was overly tired.  He's snoozing away now, looking precious, as always.

 

"I'm So Glad You Found Me In Here"

I love to read.  When I read, though, I do it for entertainment, to escape reality for a short period of time and be someone else, go somewhere else, do something else.  My particular favorites are Lynn Kurland's time travel romances.  They are so much fun!

I don't typically like self-help or any type of serious books. A friend from church told me about a book regarding Autism, and that he thought of Levi the whole time he was reading it.  When he gave it to me, I promised myself I would really try to read it, but I wasn't excited about it.  I brought it into the house and noticed the title, I'm So Glad You Found Me In Here, and was instantly interested.  This book was written by a non-verbal Autistic man and his mother.  I was bawling like a baby before I made it through the introduction and prologue.  I just started it this morning and haven't finished it, but it's so engrossing I've found it hard to put down.   This man, Matthew Hobson, was diagnosed severely mentally handicapped at a very early age because he could not speak, point, or perform many other actions that were deemed "normal".  When he was eleven, his mother learned of Facilitated Communication, which involves someone applying resistance to the non-verbal person's hand so they can use a keyboard.  This opened up a whole new world for Matthew, and his parents discovered that although his body did not work like ours, his mind has always been sharp and intelligent.  He began going to regular ed schools, graduated high school, and college!

I'm so grateful to Bob for giving me this book!  This story is so inspiring to me!  I have always said that there is more going on inside Levi than we know.  As he feels better physically, we have more evidence that he understands far more than is readily apparent, and his motor skills, vision, and other areas are progressing.  I think of the old saying "if the lights are off, there's no one home".  Sometimes Levi's lights appear to be off, but there's definitely someone home.  He just can't get to the door.

Levi's First Appointment with Dr. Herman!

Dr. Herman was Tommy and Miranda's pediatrician, and we are so glad to be able to take Levi to him now!    He's an outstanding doctor with a fun, positive attitude.  Levi has had a lot of labored breathing since January. I've made an appointment with an ENT specialist, but I was looking forward to hearing Dr. Herman's opinion.  He said his lungs sound great and the issue seems to be in the nasal area.  Actually, everything looked great!  Levi has lost more weight, down to 19 pounds 3 ounces.  I was expecting even more of a loss because he's looking so thin to me, but maybe I'm just not used to seeing his little arms and legs bared all day.  He got the last two shots he needed, and now he is finally up to date!  No more shots until Kindergarten!  He wasn't happy with it, of course, and now he's trying to sleep it off.  I've given him Tylenol and am praying that he doesn't spike a fever.

We talked a lot about the bowel issues, and Dr. Herman will be faxing the referral to Cincinnati Children's!  Hopefully I will hear from them this week!

Dr. Rosenblum ordered a test to check his hemoglobin since he's had some more blood in his vomit.  The last two mornings he's woken up with some red blood on his sheet.  At first I thought it might be from teething, but I noticed it after he retched last night, so I'm just not sure.  I tried taking him to Quest to have the blood drawn, but they were unable to get it.  I so much appreciated the lady's honesty, though, in telling me that she couldn't find a good vein instead of sticking him countless times first.  She also tried to do a finger stick, but he curled his fingers up tight.  The right hand was nice and loose, but as soon as she took hold of it, he crunched up his little fist.  He was having none of it!!  So when Patrick gets home we will head out to Cardinal Glennon to have it drawn.  Hopefully Levi won't mind the drive.

Hurray! Another Poop!!

Today was a fantastic day!  We set out early to hit the first yard sales of the season, and were definitely not disappointed.  We picked up some nice bargains and had fun doing it.  Levi was wonderful in the car, and didn't even mind getting in and out.  He actually fell asleep in the car, which is rare for him, and Moga stayed with him so we didn't have to wake him up.  This evening we met our family at Dave and Buster's for Jeramiah's 15th birthday.  It was a nice surprise to run into our friend Erin and her son Isiah!  We had a lovely dinner; it was so great to catch up with family and see the little ones.  Levi was doing well until I assume a pain hit him and he screamed and passed gas very loudly, and vomited.  His tummy has been hugely distended again since this afternoon.  We left after dinner so we could get him home.  Again, he was great in the car and the closer we got to home the better he felt.  He actually fell asleep in the carseat just before we pulled into the driveway!  I got his bath ready right away and when I stripped him down I found a lovely dirty diaper!!  This makes the fourth time that he's had a bowel movement on his own in the past two weeks.  Something is definitely getting better!  As far as the referral to Cincinnati Children's goes, we have to see the new pediatrician first, so we have an appointment on Tuesday.  I'm looking forward to it.  Dr. Herman has been Tommy's pediatrician for about the last ten years, and he is an excellent doctor!  Even though Levi's bowels seem to be waking up, I think it's best to go ahead and move forward with the referral.  The more help we get, the better.  Here is a picture of him smiling at me in his bathtub.  His smiles were much bigger than that, but of course I couldn't get those on camera. LOL

 

Vacation Anecdotes

Patrick started his vacation from work on Friday, and we had the opportunity to take a spontaneous vacation to the Lake of the Ozarks.  Friday afternoon he received a call from work with the wonderful news that he had received the promotion he'd been waiting for!  What a great way to start vacation!

We headed out early on Saturday, and although Levi hadn't had a good day on Friday, the drive wasn't nearly as bad as it could have been.  We settled ourselves into the condo (which couldn't have been more clean and gorgeous!) and since it was raining we just took a lazy day and relaxed.  As the afternoon wore on, Levi's crankiness increased.  He tried to sleep but kept waking up.  I knew he was in some kind of pain, but not sure what was causing it.  I figured it was a combination of teething and tummy issues.  After I gave him a bath, I noticed that the skin around his button was swollen a bit on one side.  I decided to change the button.  I didn't think that's what the issue was, but it couldn't hurt to try it anyway.  Lo and behold, I think that actually was the problem!  After I changed it, I took him to snuggle with Mom.  He fell right to sleep and slept soundly the entire night. I was so relieved!

Easter Sunday he woke up with big grins and was back to his happy self.  We checked out everything from Easter Bunny and headed out to breakfast at On the Rise restaurant.  The atmosphere was awesome, and I just can't say enough about the food!  I had Vanilla Bean French Toast.  I think it was maybe the most delicious I've ever had!  We all left stuffed and happy, and headed to Ha Ha Tonka state park in Osage Beach to view the ruins of a castle built in the early 1900's.  Anyone who knows me knows that's right up my alley!  It was an amazing sight.  We decided to trek down the mountain (200 feet down and 325 steps!) which was not too bad going down, but not fun coming back up!  The view from the bottom was totally worth it though, and the exercise was good for us.  It was a gorgeous warm, sunny day, and we soaked it up!  The rest of the afternoon was spent resting.

Some of the steps we walked down.

View from top of bluffs at the castle.

View of same area from the bottom.

Monday we went to the local outlet mall.  It was cold again, down into the 30's and 40's, and Levi was not feeling well again.  He doesn't like cold weather, he didn't want to sit in the stroller, but he did alright and we shopped through about three quarters of the stores.  We took him back to the condo and relaxed for the afternoon, then Moga was sweet enough to stay with Levi while Patrick and I went out to dinner at JJ Twiggs.  It was a rustic restaurant with interesting decor.  There were antler chandeliers and light fixtures, a stuffed raccoon holding a jar of peanut butter.  The food was excellent!

Tuesday we headed to the Amish/Mennonite community for yet more shopping and eating.  (Who can get enough of that, right??)  We visited a market that was stocked full of dry goods, frozen homemade pies, popcorn, and so much more.  One of the girls was making homemade peanut butter that smelled heavenly.  I bought some loose tea, apple butter, blackberry butter; Patrick got bread and butter and hot pickles, spices, root beer extract to make homemade root beer, popcorn; Moga got homemade pretzels, sunflower seeds, and more.  The next stop was a fabric store.  I didn't quite know what to expect, but it was hand's down the best fabric shop I've ever been to!  The prices were from reasonable to dirt cheap, the selection was excellent and refreshingly different from the mainstream fabric stores, and I think I could have spent a week there.  Needless to say, we walked out of there with shopping bags bulging.  Mom bought Levi a little Amish hat, and I would have gotten him a suit but they were all too small.  Patrick and Levi lounged on a couch while we shopped. After visiting another market and a quilt shop with the most beautiful quilts I've ever seen, we headed to Lehman's, a Mennonite restaurant.  The food was simple but delicious.  All in all the people of the community were friendly. We had several looks due to Levi's feeding tube, but no more than any other day. I was surprised to see that most of the women wore colorful calico dresses since the Mennonite women we see at Cardinal Glennon wear solid neutral colors.   It was a terrific day, and Levi felt pretty good all day.

Stewart's Restaurant, where the cinnamon rolls were bigger than Levi's head!

Amish country road.  You can see the wagon wheel marks in the road, and a carriage in the distance.

Wednesday Levi woke up with huge grins.  We toured Bridal Cave and drove all over Lake of the Ozarks State Park looking for Swinging Bridges, which were pretty neat.  I'm not fond of suspension bridges, but these were not very high and perched over small creeks.  I hopped out of the car to take pictures.  By this time the weather was getting warmer.  We went back to the outlet mall to check out the stores we missed, and Levi began to feel sick.  I had to run out of the Carter's store with him so he didn't vomit inside the store, and ended up wearing it myself.  The poor little guy was feeling awful.  We took him back to the condo, and after vomiting three times I gave him Zofran and he was able to fall asleep.  We attempted to take him out to dinner at Jake Culpeeper's Steak House and thankfully he slept through dinner, which was delicious.  Just before we were ready to leave, he got sick again and Moga took off outside with him but didn't make it before he vomited, and so she wore  it this time.  That must have made him feel better because by the time we reached the condo he was smiling again.  I stripped him down to give him a bath and found that he had a full POOPY DIAPER!!!  Besides the two small bowel movements he had last week, this is the first normal stool he's had without a suppository in over two months!!!  This has got to be a sign of his bowels waking up.  Praise God!!!

Swinging Bridges.  The gaps between some of the boards were almost the width of my feet!

We left Lake of the Ozarks this morning and are now enjoying being home again. It's warm and sunny outside, and we are looking forward to lovely Spring weather and getting out of the house for walks and trips to the park. We've already started Erythromycin again, hoping for great results.  He's only had it for 2 1/2 days a couple weeks ago; I stopped it because his belly was grumbling a lot and the doctor said we could wait until after vacation.  I am crediting it with the recent poopy diapers, so I'm praying that he will tolerate it well and it will return his bowels to working order.

POOP?!!

Well, Levi threw up a bit again.  Surprisingly, when I changed his diaper, there was poop in it!  It was a small amount, but certainly much, much more than he's been able to do on his own in at least two months!  He must feel proud of himself; he's been grinning from ear to ear ever since.  In honor of the occasion, he is wearing his "I pooped today" t-shirt that Aunt Shell got him the other day.  She must have prayed over it before she brought it over.  I know this doesn't mean that the whole issue is over with, but it's an excellent first step!!  God is so good!

GI and Neuro Med Changes

Levi has lost a little more weight.  He seems to run the vomiting cycle about twice a week lately.  Once he starts, we stop his formula feeds and give him only water or pedialyte, but it doesn't make much of a difference.  For some reason it's hard for him to stop, and it can take up two days before he will tolerate formula again, and a few times he's had to be hospitalized for IV fluids and testing.  Last week during a particularly excessive vomiting cycle, I asked Dr. Rosenblum for Zofran, an anti-nausea medicine that he had once in the hospital.  My theory is that if we can stop the cycle, he will not have to go without nutrition for so long, and can begin to regain the weight.  The doctor isn't a fan of Zofran, but he did prescribe it, and it's working very well.  One dose stops the cycle, and after a couple hours he's back on formula.  So far so good!  The Dulcolax suppositories are still working, but taking anywhere from 3-5 hours before producing results.  We have now doubled the dose, and it's working in 15 minutes!  We are also using it as needed, instead of just twice a week.  He has been started on Erythromycin, an antibiotic that has side effects of diarrhea, and has been found to promote intestinal motility.  It has caused a lot of stomach grumbling and distention.  I'm not sure if it is because the intestines are moving and he just isn't pushing out the stool, or if it's promoting gas, or if he's just not tolerating it.  Time will tell.  The referral for the motility clinic at Nationwide Children's Hospital in Cincinnati has finally been sent.  I should hear something from them this week.  I'm praying we can get in fairly quickly.

On the neurological front, we have taken the second decrease in Phenobarbitol.  The last time we decreased we noticed a lot of learning and more body movement, so I'm excited to see what he will do this time. 

Even though he's still having these issues, Levi has been happy and bestowing smiles on us.  He's sleeping well at night as long as his tummy is feeling fine, doing great in therapy, and is overall in a good mood.  We are working on tiny flavors to promote interest in food.  I let him bite a little into my apple yesterday, and he smiled.  Since he's never cared either way for food, that was a shining moment!  We are very much looking forward to getting rid of this crazy snow (we received 15 inches a few days ago!!) and welcoming warm weather so we can go on walks and sit on the porch swing.  Levi LOVES to be outside!!