Tuesday, October 5, 2010

Do Not Bend

Its been a LONG couple of days here on the home front. Drew was scheduled for another bronchoscopy for this morning to take another look at his airways to make sure that the antibiotics had killed off the staph that they had found in his lower airways during his last surgery. We always get a letter in the mail about a week before any procedure (this is number 8) giving you the lowdown on when to stop eating, who to call if x,y,or z comes up beforehand, and what you need to bring with you the day of the surgery. The big red flag on every letter is regarding what happens if the child gets sick before surgery. Which brings us to this past weekend...

Drew started throwing up Friday evening. Its pretty much every time he eats, but its not always right after he eats. And when I say throwing up, I mean projectile vomiting. Like shooting out of his mouth with force covering anything and everything in sight. But heres the weird thing - it only happens when hes sitting. The boy can lay on his belly after sucking down an 8oz bottle and hes fine. He can jump up and down in the jumparoo for half an hour and nothing comes out. You sit him up and he blows. Every time, never fail.

Before we had realized that it was positional, we thought that maybe he just had a bug which has been going through our house for the past week or so. Except no one really had terrible vomiting. But it was our best guess. After a 4th soaking of everything with puke on Sunday evening we finally called the docs. We called his pediatrician as well as his CF docs because they deal with both breathing and GI issues. They both asked the same many questions - does he have a fever (no), is his belly distended (no), is he having wet and dirty diapers like normal (yes), is he irritable (no), is he sleeping normal (yes) and they both concluded that it was likely just a virus. We told them about our vomit inducing sitting position theory and neither could think of any reason that that position would cause him to barf. Neither thought we needed to go to the ER, but the pediatrician wanted to see us in the morning. I kindly told her we had plans but could come that afternoon. As a disclaimer, if I really thought that he was dangerously or seriously ill, I would have cancelled my much anticipated trip to the pumpkin patch. However, outside of the giant pukes every couple of hours, you would not know anything was wrong with this smiling, laughing little boy.

Monday afternoon, after that fun trip to the pumpkin patch, I took Drew to the doc. She didn't have a clue what could be wrong with him . She suggested that I feed him a bottle with her there, so I did. We waiting there for 30 min after he finished and he smiled, laughed and coo'ed. We got out to the car, I sat him in his car seat, and he threw up his 8 ounces all over himself. The doc said that she wanted me to take him to the hospital to have some xrays and an upper GI study done. At about 4:30 we headed out to the hospital. The x-rays all looked fine. The upper GI study (they have him drink something that shows up on x-ray so that they can follow it through his esophagus, stomach, intestines, etc. to make sure there are no blockages or abnormalities) looked perfectly normal. They added an ultrasound to check out every other area of his abdomen that wasn't covered by the other two tests and it showed nothing. All perfectly normal. He did barf while we were there so they got to see the sheer quantity of what was coming out of him, but they just can't figure out why or what to do about it. So at 9:00 they sent us home to pack for our return trip to the hospital for the bronch in the morning.

We had to be there at 6am, which meant waking up in the 4:00 hour. We talked to anesthesia when we got there and they weren't so sure about putting him under since he'd been vomiting so much. If he would vomit while asleep he would aspirate it into his lungs and that would be really bad. But the doctor really felt that it was critical to get another sample from him lungs in this timeframe to determine whether or not we'd need IV antibiotics or if the oral ones he'd been on for the past month had killed the staph. We told them that over the past 4 days the only times he'd thrown up had been while sitting so they decided that the risk of him actually throwing up while asleep was pretty low.

It only took about 15 minutes and then the doc told us that he was thrilled with how he looked. All of the secretions he'd seen before were done and there was no inflammation. No mucus means no bacteria means no more antibiotics. He said that there was just dramatic improvement in the shape of his airways since he had the surgery to move the artery off of his trachea and everything seemed to be working better. His airways are still funny looking, but who cares what they look like if they work okay. This is the very first time we've got to meet in the little post-op conference rooms with the doc and gotten ALL GOOD NEWS. There's always something thats not good. Today was ALL GOOD!!!

Once they woke him up and took him to recovery I was able to nurse him. He was starving. Poor thing is so hungry because he pukes up everything that goes in, and the last time anything had gone in was 8pm the night before! So he ate, and we stayed there for maybe 45 minutes before they sent us home. We got him to the car, put him in his car seat, started toward the exit, and he starts with the barfing. Covers himself with puke from head to toe. I had to stop and change him. I called the doc again when I got him and they are worried about him getting , as am I. They said that since this only happens when hes bent, as in sitting, and as silly as it sounds that we should get some pedialyte into him and just don't bend him. They know and we know that this can't be the long term answer, but until they figure out what the heck is going on we just need to prevent him from getting dehydrated or losing weight so if we can keep food in by simply keeping him straight, then we need to just keep him straight. He kept a couple of bottles down today...until this evening when we changed him and apparently had him bent just ever so slightly to much, and up it all came. He ate again before bed and is sound asleep now and has been for a couple of hours with nothing coming back up.

Who knows what this means. This poor kid. The nurse today said that given his history it would be no real surprise if there were some sort of anatomical abnormality causing this. But thats strange because it just started out of the blue and no one can find anything with any sort of test or imaging device. I guess we'll be talking with some GI specialists over the next couple of days to see what we can figure out, and until then my man will just be hanging out, not bent.

1 comment:

  1. Poor Little guy and mama!! I can remember when Ayla was little she went through a puking phase for about 2 weeks all the time...we ended finding out it was Pneumonia..but it was awful on baby and mama.

    Hoping this is just some thing that changes soon for him and there is no anatomical abnormaility. It's so hard to hear when our babies are perfect to us!!!

    Take care and my prayers are with you, such a strong mom you are. I only have one child and you have 2 others....do I hear..SUPERMOM???