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!!

First Inpatient Day

We had to be at the hospital bright and early this morning for a consult with anesthesiology before being admitted.  We brought all our luggage and had to stow it at the welcome center while we went about our business before getting a room.  I've never appreciated all the many wagons at Cardinal Glennon like I did this morning when I didn't have one.  lol  Our driver from Children's had a pick up at another hotel, and we met a lovely woman and her little boy, Colton.  What a cutie!  She said he has been in the hospital for three weeks.  He was flown in on life support, and within a week and a half Children's had him up and feeling better again.  She'd just found out that he has heart issues.  He's fourteen months old and she had no idea there was anything wrong with him. They were going home today!  Please join us in praying for little Colton, and for his mom, who was here dealing with everything on her own.  It was such a blessing to meet them!

So far today Levi has had an IV placed, in only one stick, no less!  We were so pleased with that!  He is currently receiving Go Lightly through the feeding tube to clean out his colon, and will have an enema through the stoma so that he will be completely empty for surgery tomorrow.  He's having several procedures tomorrow, including a colonoscopy, endoscopy with biopsies, and placing of catheters through the intestines for those special motility tests.  He will be under anesthesia, so hopefully he will be comfortable throughout the day.

Right now he is sleeping in Moga's arms.  He knows he's in the hospital, but seems a bit confused that it isn't his own hospital.  But he knows when the nurses come into the room.  He watches them out of the corner of his eye.  Poor little guy.  I'm praying that Dr. Kaul will find the problem, that it's an easy fix, and will be taken care of while we are here.  It's now been nine months since the g-tube placement and the beginning of the GI nightmare.  I'm so ready to put all this behind us and watch him blossom into a happy toddler!

 

Meeting Dr. Kaul in Cincinnati

Our bus trip was a pleasant experience.  Since Levi had been feeling so poorly, we expected to have some issues along the way, but he didn't make a peep the whole trip.  He liked looking out the window, and I'm sure he liked the gently sway as we traveled.  Our driver was very kind.  He pulled us out of the very long line and let us board first, since we'd been standing for so long with Levi.  We transferred buses in Indianapolis.  We were running a bit behind and so didn't enter the station but went directly to the other bus.  One of the workers ran back to get my suitcase, and Mom saw her put it in the bus.  When we reached the Cincinnati station, we were the last ones off the bus, and Mom's bag was the only one left.  Mine was nowhere to be found.  Of course I hadn't taken my own advice and packed a change of clothes on my carry on bag.  I was sure that someone had grabbed it by mistake and wasn't too upset until I realized that the scale I use to weigh the food for Levi's Ketogenic diet and the cord to the feeding pump were both on that bag!  I spent a mostly sleepless night, paid an exorbitant amount for a taxi to run me to Walmart to buy a change of clothes, and was thankful that my bag had been returned during the night.

Monday afternoon Levi was scheduled for a gastric emptying test and a clinic visit with Dr. Kaul.  I was a bit nervous to meet him, considering he is the top motility specialist in the nation.  I guess I expected him to be arrogant, but I was pleasantly surprised.  He walked into the room with a smile, laughed and teased with the nurse, and set us right at ease.  He asked me questions and actually listened to me, and let me explain everything without interrupting me.  It was SO very wonderful to be taken seriously, and not feel as if I were being blown off, or labeled as overly dramatic.  His nurse, Jackie, was just as terrific as Dr. Kaul.  They looked at his tummy and discussed a few things, then the doctor thanked us for coming, and Jackie explained the inpatient testing.  Wednesday will be getting the IV started, taking bloodwork, etc.  On Thursday they will sedate him and place catheters all throughout his intestines.  One catheter will come out of the stoma, another out of the feeding tube area.  On Friday they will hook these tubes up to computers, which will measure motility in every area of the intestines.  This will continue for several hours, and they will explain it to me throughout the day.  We will be discharged on Friday and contacted the following week with a plan, unless they find something that needs to be taken care of immediately.  I surely wouldn't mind coming home with everything already taken care of!

He has been slightly cranky and sleeping a lot.  He doesn't want anyone to mess with him, that's for sure!  But otherwise he's doing very well!  We are feeling all the prayers being sent our way!  Thanks so much!

First Ketogenic Diet Anniversary!!

I know we have a lot of other exciting things going on right now that I haven't updated about yet, but I think deserves its own entry.  Today has been one year since Levi started the Ketogenic diet!  There have been some rough patches, but this diet has been the miracle we've been praying for!  Last May, Levi was having 100 plus seizures a day, while taking 5 antiepileptic medications.  I'm happy to report that now he is having 5-10 seizures a day, and we are in the process of weaning off the last seizure med!  The severity and duration of the seizures have drastically improved as well, and we have had many seizure free days.  I believe the breakthrough seizures he has now are due to the pain from the GI issues he's been dealing with.   I'm praying once those have resolved that he will go completely seizure free.  Thank God for leading us to the Keto diet!

 

Cincinnati, Here We Come!

Today has not been the best day for Levi.  He's running the crying/sleeping pattern again.  The colostomy bag leaked so it had to be changed.  I've been worried because he seems worse today than the rest of the week.  I thought about calling Cincinnati Children's to see if we could get in sooner.  Then I realized that I was getting myself all worked up and not putting things in God's hands.  So I calmed down, and prayed that the nurse from Cincinnati would call, and put the whole issue into God's hands.  Not an hour later, I got the call!  They had a cancellation and wondered if we could be there this coming Monday!  The nurse was so apologetic, but I assured her that this was an answered prayer, and we would be there whenever they needed us to be there.  We are scheduled for outpatient testing and a clinic visit with Dr. Kaul on Monday afternoon, an outpatient test on Tuesday, and he will be inpatient from Wednesday through Friday for more extensive testing.  They have specialized testing that can determine the motility of the bowels, what parts are working or not, and more. 

It's been a whirlwind, but the bus tickets are bought and hotel accomodations have been made.  The Ronald McDonald House is full, but the hospital partners with local hotels, and we were able to get a room at a nice hotel for 1/3 of the regular price, ten minutes from the hospital, and they also provide complimentary car transportation for each of his appointments.  They are even picking us up at the bus station and taking us to the hotel! 

This is a prime example of how rewarding it is to put our trust in the Lord.  We don't have to have all the answers.  Too often I try to rely on my own knowledge, but that just stresses me out and makes me feel inadequate.  It's when I remember that God is all-knowing, and if I just allow him to take my troubles, he will take care of them better than I ever could.  So thank you, Jesus, for answering this very desperate prayer, for being here for me when I trust you, and when I mistakenly rely on myself, for loving me, being patient with me, and for so much more I can't even put into words. 

I have this picture on my computer screen.  It reminds me of Jesus and Levi, and gives me such peace.  I truly believe we will find answers in Cincinnati, and Levi's healing will finally be complete.