Ignored Post

I have been ignoring this post for a very.  long.  time.  I was hoping maybe if I didn't write about it, it would go away, but no such luck.  Poor Lalito is back to his old throwing up ways.   Burp clothes are back in heavy rotation.  Conversations with doctors are frequent.  Even Caleb has started threatening to throw up in fear that Lalo might get more attention than him.  I'm almost 100% positive this is my punishment for getting a little too cocky and buying a new rug this summer, but in my defense it was only $20 at Target and I thought we were over this!

It all started around mid-August.  We felt like Lalo was doing great and finally pretty much over that stomach bug.  He was refluxing a little more than he was back in June/early July and would spit up maybe once every day or 2.  No big deal, so we were anxious to compress his feeds a little further and move forward on the whole thing.  We worked with the nutritionist at our GI dr's office and started giving Lalo more overnight and less during the day with several breaks 2 hr breaks.  Very quickly Lalo started throwing up more, maybe 3-4x/day.  I think we made it less than a week before we jumped ship and went back to continuous, thinking that would bring us back to where we were.  Unfortunately, it didn't help and Lalo was still throwing up just as much, if not more. 

We were getting ready to head to the beach for a week, and with each day we were more and more nervous that something was wrong.  The GI doctor agreed that something wasn't right and decided we needed an upper GI study to give us more information.  Easier said than done, it took a while to get scheduled and then the first available appointment was right in the middle of our planned trip.  We didn't know what to do and were getting super frustrated, so that Saturday morning we got xrays to make sure Lalo didn't reherniate.  The xrays came back okay, so we decided it was safe to head to the beach and planned the upper GI for the week after.  The beach was fantastic (other than the rotating burp clothes), but I'll save those details and pictures for another time. 

The upper GI was long and frustrating.  Long story short, the study showed that it appears there is something above his diaphragm, aka possibly reherniated.  I texted the surgeon and since he was at the hospital at the time he came down to review the results with the radiology doctors.  In the end they decided that they can't be sure whether this is an actual reherniation and there is bowel in his chest or if it is the patch they used for the last repair that is kind of folded upwards.  Either way, the surgeon was not convinced that the small piece of what they are seeing could be causing all of Lalo's current trouble.  He was not anxious to rush Lalo into any surgery without having a better idea of what was going on.  We were happy with that since it was the day before Lalo's birthday and we wanted to be home for it!  The surgeon told us to come back in two weeks so we could do another set of xrays, gave us some warning signs to watch out for and said to keep in touch with any changes. 

Well the following week was just awful.  Lalo had at this point started waking once or twice a night, throwing up and inconsolable for up to an hour at a time.  His daytime naps were also being constantly cut short because he would wake up screaming until he threw up.  One of these nights he also had a fever, so we pretty much felt like we would be taking him to Hopkins at any moment.  We texted and talked to the surgeon several times.  He had us get xrays while we were at another appointment at JH.  Luckily (?) they didn't look any worse than before but that still didn't tell us what was wrong.  At this point Lalo was throwing up 10-15x/day and almost constantly showing signs of reflux (arching, grimacing, shrieking) in between.  It was clear to us that he was in almost continous pain :( The surgeon said he would discuss with GI doctor and come up with a game plan and when we got to the point where we couldn't handle it anymore we should bring Lalo into the ER and they would admit him until we could figure things out.  If it weren't for Lalo's birthday party last weekend, we would have taken him at several different points.

Luckily, we toughed things out and brought Lalo in to see the surgeon this past Tuesday.  Lalo did his best to make me look like a fool by laughing, smiling, and playing games while there.  Of course he did not cough or vomit once! The surgeon said many times this is not an OR baby! Lalito was kind enough to hold his projectile throw up until the second we pulled into our driveway.  But they surgeon did give us our game plan.  This coming week Lalo will get a GJ tube placed again.  This is the one that goes past the stomach directly into the small intestine.  This will be done on Wednesday under anethesia.  They will give the GJ tube a 2 week trial.  If he does well with it, it is probably his pylorus (the muscle between the stomach & small intestine) that is causing him problems.  If he continues to vomit with it, it may be either the hernia/patch issue or that there is a neurological cause for it (we personally don't think that's the case).  Regardless, we will be looking at another surgery shortly after that.  It's dissapointing, but at this point all we want is for Lalo to be more comfortable (and perhaps not be attached to a bookbag 24 hr/day and maybe even eat a little something by mouth). 

We also had Lalo's 12 mo. old well visit right after his birthday.  Overall, Lalo did well - good weight & height and his lungs sound wonderful.  However, we did encounter one new problem.  Lalo's head circumfrence went down from his last visit.  When we had the appointment with the neurosurgeon this summer, he had suggested a MRI.  The pediatrician pushed for this to be sooner rather than later, since this could be an indication that bones are fusing too early and causing growth issues.  The neurosurgeon was not too concerned and wants us to resolve Lalo's current health issues.  So we'll see what comes with this.  If we get admitted at any point, we will try to push to get this done, so we can either put it behind us or have an idea of whether will need yet another surgery. 

Wish us luck this week!  I'm not exactly sure what we're hoping for, but some answers would be wonderful.