Doing Well!

Today was a busy day for Levi.  The NG tube and the IV were both taken out.  He got a PICC line, which is like an IV but more permanent.  He will have to go home with IV antibiotics for about two weeks.  So far the cultures are still showing no infection from the shunt.  Since it's been over 24 hours since the cultures were taken, then most likely there is no infection present.  Thank God! 

Levi has already met two out of three requirements for going home.  He hasn't had any fevers, and the stoma is working.  Tolerating his normal feed schedule is the final item he has to cross off the list.  Tomorrow they will start feeding him half strength Pedialyte at 10 mls an hour and once that is tolerated he will progress to half strength formula, increasing by 5 mls every six hours or so, with a goal of full strength formula at 40 mls an hour.  We will go home on this continuous feed, which is what he was on before the surgery, but we will be able to begin increasing to bolus feeds again.  I'm excited about that.  I'm not a fan of continuous feeds through the day.

He has had a couple issues of dropping/irregular heart rate while he's been in a deep sleep.  He's had two EKG's and a consult has been put in with a cardiologist.  Dr. Fitzpatrick doesn't think it's an issue, but she wants to be sure it's checked out.

Some of our 2 South nurses came to see us yesterday, and I ran into a couple others in the cafeteria.  We miss them and hope to be moved down there when we are downgraded from TCU status.  Our TCU nurses have been outstanding, though!

This morning Levi hit a rough spot with pain, and again this evening.  The rest of the day he was awake and alert frequently.  Now he is snuggled in bed for the night, and I'm about to do the same thing.  Thanks for keeping him in your prayers!

Headed down to get the PICC

 

Update

This morning Levi was still pretty sore and would get cranky just before time for meds.  Morphine is ordered in case the other meds don't take all the pain away, and he had one dose this morning, and one in the afternoon.  As the day wore on, he seemed more relaxed.  The surgeon wanted him out of bed and moving a bit more.  She said it's good if he cries, he needs to take deep breaths to keep his lungs clear, and we can't just ask him to cough for us.  That makes sense.  I was worried it would hurt him, and he was uncomfortable during the move, but once he got settled in Patrick's arms he was fine.  In fact, he was better than he'd been all day.  I took him when Patrick left, and it felt great to cuddle with him.  I gave him a sponge bath and brought out a few required cries, then he snuggled under his fuzzy blankie and went to sleep.  He had one issue with irregular heart beat and they took an EKG.  It was normal.

Several good things happened today.  He is already stooling into the colostomy bag.  The surgery resident said that he is ahead of the curve, and they were surprised and pleased to see that it was working already.  The foley catheter came out this morning, and he's had an appropriate amount of wet diapers.  The neurosurgeon came in and tapped the shunt, by placing a needle into a reservoir in the shunt and draining spinal fluid.  She tested all components and said that everything is working very well, and the fluid looked great.  The preliminary results show no signs of infection, which is wonderful!  The complete cultures won't be back for a few days though.  Tomorrow they will place a picc line for giving tpn nutrition while we let the bowels rest.  He should only have to have that for a few weeks.

I feel so blessed!  Life has been pretty difficult since the g-tube was placed, and now I feel like the issue has finally been found and will be resolved.  Our hope is that once the colon is put back together, it would have had time to heal, and will work correctly again.  I know that God's timing is perfect, and I definitely have had very impatient moments in the last eight months, but I truly feel like the time for answers has come.  We may never know why Levi's colon has had this issue, and that's okay.  The important thing is that we are on the road to fixing it.  I'll continue to praise God, and follow where he leads us, and trust in him.

 

Plan for Going Home

I just spoke with the surgical team and have learned what is expected before Levi can go home.  The surgeon said she would anticipate about a five day stay in the hospital, but of course that depends on how everything goes.  Ultimately, in order for Levi to be released to go home, he would have to be fever free, on his normal feed schedule, and have a working colostomy.  She also had no problem with writing a prescription for benadryl just in case the meds already ordered aren't enough to keep him comfortable.  They should be, but it gives me peace of mind to know there is something else just in case he needs it.  I really like the surgeon (I believe her name is Dr. Fitzpatrick).  She's very personable, explains everything very well, and doesn't mind my questions.  She said the earliest that she would consider reversing the stoma would be six to eight weeks.  That's actually earlier than I would have thought.  Again, that depends on how well everything is working. 

The neurosurgery team will tap the vp shunt tomorrow to be sure that there is no infection within the shunt.  This involves inserting a needle into the shunt and withdrawing some spinal fluid.  It hopefully won't be too uncomfortable, and definitely will be less painful than a spinal tap!  If there is infection, it will be treated with IV antibiotics, which means possibly going home with a picc line for a couple weeks.  Dr. Fitzpatrick said that the area around the shunt tubing looked good and she doesn't anticipate an infection, but it's better to know for sure.  I agree!

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