Thursday, March 28, 2013


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!!


Wednesday, March 13, 2013

Trying to Crawl

Since the Baclofen increase, Levi has been even-tempered and happy.  He's had only one meltdown, which I'm pretty sure was due to teething.  He's finally cut most of them, I think we're just waiting on 2 or 3 of the canines to pop through.

I had some sewing to do today, so I laid him on the floor in the hopes that he would try to roll or move around and explore.  He fell asleep instead.  But first, he moved his little legs like he wanted to pick up and crawl away!  He didn't go anywhere, but it's a start!!  Check out the video below.

Thursday, March 7, 2013


Levi is feeling much better.  This has been a very good stay.  We have addressed the issues of the bloody vomit, concerns over the feeding tube, congestion, and cerebral palsy.  I'm sure I've mentioned that Levi throws his hands out, reminiscent of a newborn's fear of falling.  He's been doing that for about three months. He does it in different situations, so we haven't been able to correlate it to anything in particular.  We saw the neurologist who specializes in CP, Dr. Goretsky.  He said these movements are caused by CP, and will happen when Levi is excited, mad, scared, trying to reach or be functional with his hands.  It's because he is not neurologically mature enough to be able to coordinate his muscle movements smoothly.  We are increasing Baclofen from 15 mg a day to 22.5 mg a day over the course of the next two weeks.  This should help with any pain he's having from muscle tightness (spasticity) and also with the arm movements. 

Oddly enough, the increase in Baclofen could help with the bowel movement issues.  Dr. Rosenblum said that it is possible some of the problems are caused by spasticity of the anal sphincter.  Maybe he can't coordinate relaxing that muscle to allow stool to pass.  That makes sense.  Also, Baclofen is being used experimentally to treat constipation.  How wonderful would that be?!  Since he has started the new laxative, Lactolose, he has been able to pass gas, which was very rare before.  I'm praying with the combinations of these two meds that he will achieve stooling on his own, and we might not need to visit the motility clinic in Cincinnati. 

Wednesday, March 6, 2013

Endoscope Results

Yesterday the endoscope showed that Levi has a tiny ulcer at the end of the esophagus.  This is why he has been vomiting blood.  They won't do anything to treat it because he's already on Nexium, which controls stomach acid, and it was likely caused from so much vomiting.  The area around the button looks beautiful, so at least that set my mind to ease and I can dismiss that from my list of concerns.

He has been super fussy since the procedure yesterday.  He was up off and on last night, and screaming this morning.  I thought he was in pain from the scope, but Dr. Rosenblum said that shouldn't cause him any pain, so he put in a consult for neurology.  He's thinking it may be related to muscle tightness from cerebral palsy.  Sure enough the neuro residents came in, and they think that is what's going on.  Sometimes when he's on his stomach he will rear way up.  I thought he was just mad.  I should have remembered that he was doing that when they started him on baclofen, and it stopped.  It's due to muscle spasms.  They are going to increase baclofen by 5-10 mg a day.  Dr. Rosenblum thinks it may also help him have bowel movements by relaxing the tightness of the anal sphincter.  Wow, that would certainly be an answered prayer!  He is going ahead with the referral to Nationwide Children's Hospital in Cincinnati to the motility clinic there.  The doctor at that hospital is the number one motility specialist in the country!  It would be amazing if baclofen fixes the problem, but if not at least we have other options.

He's trying to sleep right now, but he's still very uncomfortable.  The swallow study has been pushed off again due to his irritability.  Please pray for him!


Monday, March 4, 2013

Busy Day

The Upper GI that Levi had today came back normal, as did all the bloodwork.  Tomorrow morning he will have the endoscopy, and either tomorrow afternoon or Wednesday, the swallow study. I'm putting a lot of hope into this endoscopy.  They will be able to see down his esophagus, into the stomach and a bit of intestine.  I've asked them to pay close attention to the area surrounding the feeding tube.  Obviously the tube works, and it looks fine on the outside, but maybe the placement is off on the inside.  Maybe it is pushing against the back of the stomach, or rubbing and causing irritation in some way.  I'm praying that the scope shows us what the problem is and that there's a simple and complete solution.  Seven months of vomiting, stomach pain, and not being able to have a bowel movement is a very long time!  Please pray with us that the Lord is with the doctors and shows them the way, and guides their hands and eyes and minds as they work on Levi.

We spent a very pleasant afternoon with Ann and Shelly today.  Levi enjoyed lots of cuddles, and I had wonderful stimulating adult conversation.  It was a great day!


Sunday, March 3, 2013


I was ready for a fight this morning.  I've been wanting the feeding tube site checked out almost since it was placed, and am tired of accepting the doctor's reassurance that it's fine.  I made my feelings known, and he was very receptive.  He said Levi's blood seems to be taking a little bit longer to clot than it should, so he ordered a Vitamin K shot and will check the levels again tomorrow.  He said it could also be caused by liver problems, which thank God he doesn't think is the issue, but he's ordered a blood test to check liver function, and another round of blood tests to check several different areas.  Tomorrow he will be doing a contrast, which I think consists of putting liquid through the tube and following it with x-rays to be sure that he doesn't have a blockage up high.  He will try to schedule an endoscopy on Tuesday, which is a scope that goes down the throat into the stomach so they can look at the lining and see if there are lesions, etc.  Hopefully they can get a good look at the feeding tube site from inside with this. 

All in all I'm happy with the plan, and hope that it sheds light on the core issue so it can finally be fixed, and I'm praying that the liver is functioning normally!

Levi's morning did not go very well, he's been cranky I'm sure due to having an empty tummy for so many days.  He has been on a slow continuous feed for a couple hours now, and he's beginning to feel better.  We're hoping the afternoon is better for him.


Saturday, March 2, 2013


Today the doctors have been observing Levi.  They said he was happy all day.  Sure, there wasn't anything going into his stomach.  He's been on IV fluids all day but his urine output was still low.  So they decided that he should have half of a bolus feed at 5:00 of his normal formula.  Even though I told them he couldn't keep water down the day before, and he proved that by vomiting in the ER. He didn't make it fifteen minutes into the feed before vomiting and screaming ensued.  It took Mom a while to calm him down after that. 

I was out today so I could attend foster parenting classes (only 1 more left!) and an anniversary party for Patrick's aunt and uncle.  When I got back to the hospital I found that his stomach was quite a bit more distended than yesterday,  which is strange because he hasn't had any food in three days.  The doctor was considering trying another feed, but I said no.  I have explained the vomiting cycle, and twice now he's displayed it, so I'm not putting him through that again.  The resident agreed with me.  I plan on having a long talk when the doctors come in tomorrow.  We have been dealing with the same issues since the feeding tube was placed in August.  I have been patient and listened to them for almost seven months now.  It's time for me to stand my ground.  If you could pray for wisdom and strength for me, I would surely appreciate it!  And as always, prayers for a solution to Levi's GI issues.  The Lord has answered our prayers so many times before, I know this time will be no different. 


Hospital Again

So about three weeks ago Levi had an ear infection and virus with a lot of congestion and trouble breathing.  By the time he finished the antibiotic he was fine.  A couple days later he developed congestion way down in his throat that we weren't able to suction out.  I assumed it was a virus and kept waiting for it to pass.  During this time he had several instances of what looked like coffee grounds in his vomit, and then that too passed.  The last two days he's been on only fluids, so I was very concerned when he threw up a brown substance.  Mom and I both thought it looked like old blood, or maybe even stool.  We brought him to the ER and when he threw up we were able to catch it in an emesis basin and send it to the lab.  It was positive for blood.  So we spent the night in the hospital and Levi has been only on IV fluids since midnight.  The doctor may want to perform an endoscopy this morning.  This is where they send a tube with a camera on it down his throat to check for tears/abnormalities in the esophagus and other areas.  I hope they decide to do it, I'm very concerned to know where the blood is coming from. 

Fortunately, Levi has been in high spirits and charming all the nurses.  Taking him off Miralax was the best thing we could have done.  Our happy little guy is back, even happier than before!  Thank God!!  Please keep him in your prayers.