Home sweet home

We are home as of last night.  Lalito did a great job tolerating his feeds as they switched him from IV fluids to formula through his j-tube.  His pain was pretty well controlled first with IV morphine and then oxycodone after he was up to full feeds.  Yesterday around noon they pulled out the chest tube, which made him a lot happier and I could finally pick him up.  The chest tube is a relatively small tube put in during surgery between the ribs and into the lung area to drain any excess air, fluid, or blood - it is G-R-O-S-S! Plus, I can't imagine it's very comfortable to have in, so needless to say I was very excited for it to come out.  Unfortunately, they weren't able to arrange scheduling our MRI until Friday at the earliest.  Since Lalo was up to full feeds at this point, his pain was controlled and he was off of the IV, we just needed a good xray and we got to leave.  It was a pretty quick recovery stay, but our surgeon is all about getting him out of the hospital full of sick kids.  The last thing Lalo needs is to catch something while he is at the hospital. 

We were all thrilled to be back home last night.  Both boys slept wonderfully and so did we.  Since Lalo had been doing great with not throwing up since surgery and very minimally even since our ER visit last week, we decided to try keeping his g-tube clamped (before we were basically letting his stomach emptying out through the tube to minimize him throwing up the normal, more painful way).  Unfortunately, he threw up 3 different times today and since the surgeon really doesn't want him throwing up, we unclamped it again. He again had some bile drainage and threw up one more time.  With any luck, this passes as his system recovers from surgery.  Overall Lalo is very happy and not in very much pain. 

CDH Repair #3

Third times the charm, right?  Surgery went very well this morning.  The anesthesiologist scared us with the possibility of putting in another central line if they couldn't the IV access they needed, but they were able to get two peripheral lines and one arterial line.  The surgeon was able to do the repair laparoscopically, which is awesome and should hopefully make our recovery hospital stay a little shorter.  He was very excited when he came out of the OR and even brought pictures and told us he will have the video for us next week!  He said the video is what he will be showing at his international lectures over the next year because of how great this repair went.  The diaphragm itself had ripped away from the gortex patch and that allowed the loop of bowel into his chest.  He was able to use a type of stitching to reattach the diaphragm to an additional piece of gortex that will give Lalo more room to grow.  The way that it was ripped away makes the surgeon think it was the retching that caused the reherniation.  Possibly when Lalo had the stomach bug in July, his vomiting/retching caused it to start to break away and he has never quite been back to how he was in those two good months. 

He is very confident this repair will stick for a long time if we can go about a month with no vomiting.  That ought to give him a good amount of time to heal.  He wants this to work so if Lalo starts any funny business before then, he won't hesitate to act on it.  Until then we will also have to keep with feeds into the jejunum.  Statistically, at this age and again at around 9 or 10 is when you go through a certain growth spurt that makes your odds of reherniating higher.  The surgeon also gave us lots of reminders that by the time Lalo is 5 or 6 this phase of life will just be a bad memory. The biggest risks to him now is each time we go into that OR, so his goal for us is to go at least a few years before anything else surgical (we could also do with never!).

Lalito was allowed to go to "the floor" after surgery instead of the picu!  This is wonderful because it says that he really didn't give them any scares in the OR, and it is a much more relaxed place to allow for healing (not to mention there is a fold out chair that I can sleep on).  He still has his 2 IVs and a chest tube.  He is on a morphine drip, and overall seems pretty comfortable.  Unfortunately, he hasn't really peed since surgery so they are getting ready to do a foley catheter - poor guy!  The surgeon is also keeping a close eye on him for the next few days for any bowel issues as a result of moving them back into his abdomen.  Any problems with that would send us back to the OR in a heartbeat.  Today they will do 1/2 pedialyte through his j-tube and 1/2 IV fluids, and hopefully over the next day or so work our way back to full feeds.

Thank you all for your prayers.  We have once again been very blessed and our warrior has stayed very strong.

Family pictures!

Well if there's one good thing about sitting around the OR waiting room all morning trying to distract myself, it's that I can finally post some pictures.  Here are the professional pictures we had taken to celebrate our beautiful family.  There are so many wonderful ones that it is hard to pick my favorite. 

It's back...

The diaphragmatic hernia that is... The ct scan last night showed there is definitely a loop of bowel in his chest. There is no bowel obstruction anymore though so that is very good.

According to our surgeon the risk of a bowel obstruction goes way up for two years following any abdominal surgery. This was a partial block so food was getting by, but it was having a really hard time doing so and could very well have been causing Lalo's recent problems. Why did it go away? Sometimes they can treat a bowel obstruction by decompressing the stomach and giving the intestines rest. Essentially we were already decompressing his stomach bc we have been draining his gtube constantly so he can throw up out of that and be more comfortable. It just so happened to fix itself sometime during the morning yesterday. It's funny because the GI and surgeon went back and forth on admitting us the night before and I think both were really concerned that they should have. If they had, Lalo probably would have had surgery by the time it cleared itself. God has a way of timing things just right!

The ct scan last night showed he reherniated. We had seen this slightly in mid-September on xray, but it was questionable as to whether it was actually the hernia or the patch used to repair it. Well it is bigger now and clear that it is definitely the loop of bowel coming through where the patch ripped away. It is possible that the obstruction is related to the hernia, but also possible that they are completely unrelated. Despite the fact that it doesn't seem to be causing Lalo much distress (except maybe the vomiting), it needs to be repaired. The plan right now is to send us home today if Lalo can tolerate feeds and then we will come back for surgery Monday. Our surgeon is hopeful that it can all be done laparoscopically. The MRI will have to wait until after surgery because the anesthesiologists won't risk sedating him for it with the bowel in his chest. So hopefully that is all you will hear from us until Monday! We are hoping for a quiet weekend to get us through this past week and next week.

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The quick rundown

So Lalo's issues have continued. 2 weeks ago today he got a GJ-tube. He did fine with that procedure for the most part. That night we did end up calling 911 and taking an ambulance to the ER bc he was having trouble breathing. It turned out to be croup from being intubated that day. A little excitement, but everything was quickly under control.

Unfortunately though, he continued vomiting. No more milk, but lots and lots of stomach bile and spit. He has been in a lot of pain and just generally uncomfortable. We followed up with our GI dr yesterday and he was concerned that there was something blocking the tube itself. He sent us directly for another upper GI study, where they found a partial obstruction in his small bowel. After much discussion with the GI doctor and the surgeon last night it was decided we would come to the hospital and have surgery soon to fix the obstruction as it can be very dangerous.

By some strange turn of events Lalo was an extremely happy baby once we got to the ER this morning and stopped draining bile. The xray wasn't super concerning and he doesn't seem sick, so now there are no immediate plans for surgery. Instead, we are admitted so they can watch how he does with feeds and run tests. Tonight they will do a CT scan of his abdomen and chest to see what is going on. Tomorrow, we will try to get an MRI of his head. One thing they did notice in the xray is that the possible reherniation looks a little more significant than at the last xray. At this point, that doesn't necessarily mean surgery, but it is a possibility.

We probably won't know anything else until tomorrow, but are hoping this stay brings some answers!

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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.