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Friday, August 31, 2012

G-Tube and Gastroenteritis

The past two weeks have been very difficult for us.  On the 13th, a Monday, Levi had the G-tube placement surgery, which went very well.  We were able to go home from the hospital the very next day.  On Friday night after our bible study meeting, we headed to Walmart to pick Miranda up from work when we were hit by a car in the next lane.  It wasn't at a high speed, and thankfully no one was hurt, but the side of our van was smashed in, and the other driver did not stop.  Frustrating!  The next day Levi vomited with his noon feeding, and things went downhill from there.  He screamed the rest of the day, vomited a few more times, and then choked during one episode and scared me so badly I called 911.  We were taken to Cardinal Glennon ER, had the usual x-rays and labs, and were told he was backed up.  They gave him an enema and told us to give him one a day for a day or so.  We did that for two days and figured his system was cleaned out and things would get better.  No such luck.  He was still vomiting and screaming in pain.  All this time I was concerned that the accident, although minor, had somehow jostled the g-tube and hurt him.  So off we went to Cardinal Glennon again on Tuesday, where we were admitted because he was a bit dehydrated.  He was given nothing in his tummy that entire day.  In fact, they didn't even want meds given through the tube so switched to IV forms.  The Clobazam (Onfi) he is on does not have an IV form, so they gave him Ativan instead.  Well, he woke up in the middle of the night with at least double seizures and his eyes would roll downward.  He has done this before with other seizure meds, so I wouldn't allow any more Ativan.  That really drugged him, poor little guy!  He's usually awake by 6:00, and he slept in all the way to 11! He screamed off and on all day, which I attributed to crankiness from being sleepy from Ativan.  We were going to go home after an evening feed if he kept it all down.  Well, during the feed I forgot he was hooked up, and tried to change positions and the tube came apart from the bag.  Levi started screaming and gagging.  I definitely flipped out.  I was sure I had yanked the entire tube right out of his tummy!  Thankfully all was well, I hadn't even ripped the suture holding it in place.  We continued the feed, and he vomited right after. So we stayed another night and went home the next evening.  All throughout the hospital stay Levi had been thoroughly examined by all the teams of doctors (surgery, GI, neurology, and the general floor team) and the consensus was that he had gastroenteritis.  Basically a flu bug that inflames the intestines.  It's very painful and can last up to two weeks.  On top of all this, Levi has not been sleeping through the night for weeks.  I think this is more due to medicine weans than anything else, but it has made a bad situation even worse.  We talked to the neurologist and he agreed that a small dose of melatonin as needed for sleep is a good idea.

As I write this, it has been exactly two weeks since the onset of symptoms.  Last night he slept all night and woke up with smiles. He has tolerated feeds and has had no signs of gagging.  We are praying that this bug has finally gone away for good!!

Monday, August 13, 2012

Surgery Went Well!

The surgery to place a G-tube this afternoon went very well.  We expected Levi to sleep most of the day, but really should have known better.  Levi, like most 20 month old babies, does not care for the word nap. lol  He woke up a few hours after surgery and seemed fairly comfortable, especially once I was able to hold him.  He has had two rounds of Tylenol and one small dose of morphine.  There again, we expected the morphine to help him fall alseep for the night, but he woke up after about an hour.  He's resting comfortably in the crib right now, on the very verge of sleep.  The tube does not seem near as creepy or frightening as I expected.  I am a little nervous with holding him, and changing positions, because I don't want to jostle his tummy and hurt him, but so far so good.  The nurse said I can put him in any position as long as he tolerates it well.  We tried his favorite position, facing me with his head on my shoulder, but I just felt too uneasy to keep him there for long.  Hopefully he will get a good night's sleep, feel better in the morning, and we will come home tomorrow. 

Sunday, August 12, 2012

G-Tube Surgery in the Morning

We will be heading out to Cardinal Glennon in the morning for the G-tube surgery.  Please keep Levi in your prayers!  

Friday, August 10, 2012

Feeling Much Better

For about six weeks before receiving the ng tube, Levi had been sick or in pain most of the time with teething, dehydration, etc.  For weeks I could not put him down, he wanted to be held all the time, wanted nothing to do with the toy gym or lightbox that he had loved.  Almost immediately after having the tube, he began to feel better.  Smiles were more common, he would tolerate laying down on his own for short periods of time.  Now I can't believe the change in him, and I'm so grateful!  He's happy all the time!  Not only has he gone back to playing with toys as he did before, but he's progressed to moving his legs in the attempt to crawl, getting up on his elbows, standing in the gait trainer, and even more. We've spent a lot of time outside enjoying the summer. Even better, the seizures remain much lower, and are only lasting under 5 seconds.  It's truly amazing!

We had a surgery consult at Cardinal Glennon with Dr. Vane Wednesday.  He was pleased, and seemed a bit surprised, to hear that Levi is up to goal feeding (6 ounces 4 times a day) with no reflux or vomiting issues.  He said because of this, it will not be necessary to perform the Fundoplication (a procedure in which they modify the stomach to prevent reflux)!  That is wonderful news!  It is still very possible that the reflux will go away at some point, probably when he is more mobile.  Until then Nexium is controlling it well.  We go in Monday morning for the G-tube surgery and should only be admitted for an overnight stay.  I sure will be glad to have all that tape off his poor little face!  Please pray for a smooth surgery with no complications and quick recovery.