Hospital Update

Levi had been screaming more and more on Sunday, still no bowel movement, and the area around the feeding tube button looked horrendous.  It was bright pink, oozing colors from tan to bright pink.  We had cauterized the tissue Saturday morning, but that afternoon it was bright pink again and had grown.  Same thing happened on Sunday.  I had had enough.  It was time to go to the ER again.  I was actually hoping that he would be admitted so they would figure out what was going on with his belly, and the nurses could take care of the button for me while the tissue healed.  I mean look, I am NOT a nurse, I never wanted to be a nurse, in fact I emphatically did NOT want to be a nurse.  Now to have to do these things to my own child has been extremely stressful for me.  I had reached my breaking point.

In the ER we went through the normal workup for Levi, which involves x-rays of tummy due to GI issues, ct scan of the head and x-rays of chest and belly to check the VP shunt, bloodwork, and they even performed a ct scan of his belly to get a better look.  The x-rays showed that he has an ileus (a blockage of the intestines due to the lack of movement of the intestinal muscles).  This is concerning to us because when we were in the hospital five weeks ago, supposedly due to gastroenteritis, he had an ileus.  So basically his bowels have not been working for five weeks!  He has not even been passing gas.  Now we (Patrick and I) think the entire issue over the past month and a half is due to the ileus, which can be caused by surgery or trauma, and that he probably never had gastroenteritis.  I'm pretty frustrated by that fact, because Levi has been in pain all this time, and we have all been stressed to the breaking point trying to figure out why, when the problem was staring us in the face the whole time!

The doctors explained that we have several option to try to get the bowels working again.  Thank God!  Let me tell you, hearing that your child's bowels have basically shut down is not easy to take!  The first course of action would be to put him on continuous feeds, and give one suppository a day.  That should wake up the bowels and get them moving.  I was skeptical, but last night Levi had a huge bowel movement all over his bed!  This morning he woke up with smiles and has been content to lay in bed and entertain himself.  He has not done this since before he got sick weeks ago.  I think that's a great sign!  His belly is still distended and full due to so much air in the bowels.  I don't know yet what the course of action is for today, but so far things are looking up.  Thank you all for the prayers, and please keep them coming!! 

Tummy Issues, but What is the Cause?

Saturday was 16 days straight that Levi had vomited at least once a day.  We had had enough!  We took him down to only diluted Pedialyte that day, and he had no more vomiting.  The next afternoon we added chicken bullion soup, which is the next step for sick days on the Ketogenic diet.  He did well with that, too, so Monday we moved him to some feeds of Ketocal, the Ketogenic formula.  Instead of putting the feeds through a pump over an hour, we trickled it into a large syringe and let it flow into his tummy by gravity over about 15 minutes.  We began with one ounce and were able to progress over the next couple days to 2 1/2 to 3 ounces at a time.  He cried with the formula, but no vomiting.  Interestingly enough, he didn't cry when given water or Pedialyte.  So last night I decided it was time to try 4 ounces through the pump.  He did fine.  This morning I was expecting him to be absolutely fine and began another 4 ounce feed with 1/2 the prescribed MCT oil (this is a fatty medium chain triglyceride that raises the diet ratio to 3.5:1).  He fussed throughout the feed, but I didn't think too much of it.  Not five minutes after it was finished he vomited every bit of it.  How upsetting!  He had gone three full days without throwing up, I had really thought it was over!  He's been able to take dilute Pedialyte and small bits of formula again.  I tried to give him 2 ounces this evening but only made it through one before he began gagging.  I plan to start continuous feeds in the morning for the entire day so his little body can get the nutrition it needs.

We have a GI appointment on Friday, and I'm very much looking forward to hearing what his doctor has to say.  Originally when they planned the G-tube surgery they were also going to perform a Fundoplication (a stomach surgery to correct GERD, or reflux) but since he was taking goal feeds with no reflux the doctors decided that it wasn't necessary.  We don't really know what's going on, but we think reflux is unlikely since the Nexium has been controlling it, and the vomiting began so very suddenly.  Hopefully everything is fine and it's just taking his tummy a while to rebound after the extreme gastroenteritis.  Please keep Levi in your prayers!!

This pic was taken at our last hospital stay.  St. Louis Cardinals baseball player Lance Lynn was passing out Build a Bear toys wearing Cards shirts to the children, and he autographed the shirt.  He was so kind and compassionate, we really enjoyed the visit!!