Wednesday, July 31, 2013

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!


Riding my trike!

SO much fun!!

Monday, July 8, 2013

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.

Tuesday, July 2, 2013

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!