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!