Snag

We hit a little snag today. Well, Lalo's g-tube did at least and then it popped out. After a nice walk to the neighborhood park we tried to pull him out of his car seat and the tube got stuck on part of it and yanked the whole thing out. On the way to JH we go. Not a big deal but just so close to surgery they need radiology to oversee the replacement and no one on-site so we wait while they are called in. Please pray no issues with germs at the ER and we are home soon.

Lalo

Adorable tape free cheeks

Back home!

The gtube surgery went great!  As promised, we were back home the same day.  As a matter of fact, we were home by 12:30pm!  He now has a little button on his tummy where we can attach his feeding tube.  Our surgeon (same fantastic one who did his hernia repair) took a look at his pylorus to see if that was contributing to his throwing up, but he decided it was not significant.  He also did his circumcision since after a certain age it has to be done under anesthesia.  Lalo has been sleepy and a little cranky today, but he really did great. 

At home recovering with nurse Basco

Happy boy pre-op

Lalito's wings ;)

Lalo on my birthday

Caleb and I - my 31st bday

Lalo at the park

Caleb at the park

C wants a turn to listen with the stethoscope

Not exactly thrilled about his helmet

Big eyes

Lalo - 5 months

Caleb - 19 months

GI Doc

Today we visited Lalo's GI doc for some insight into his issues with throwing up and weight gain.  This was our first visit to see the GI doc, we liked him and he has come highly recommended by our pediatrician.  He seconded the g-tube without a doubt.  He also took into consideration the pros and cons of the nissen surgery, pros being mainly the reduction in risk of aspirating into the lungs and cons being that it doesn't solve Lalo's issue of "delayed gastric emptying".  He feels strongly that the pulmonary doctors may try to insist on the nissen.  Based on Lalito's history of lung underdevelopment and of lung disease, Lalo puts a lot more at risk each time he refluxes (which is OFTEN!) If any of the reflux were to get into his lungs, he very well could end up with aspiration pnemonia, which of course means very bad things for his health.  Aside from considering the nissen, he wants to agressively manage his reflux.  He made several recommendations...1. Discontinue one of his meds (Bethanechol), 2. Almost double another med (erythromycin), 3. Decrease the volume of food he gets, increase how many calories it is (back to 27 calories/oz) and 4. Switch to continuous feeds.   We are happy to have a game plan and are very hopeful that it will have an impact.  The only part that feels like a step backward is the switch to continuous feeds, but if it helps we are willing to try it and work our way back once the vomiting is less of an issue.  This means that he will now be receiving food constantly throughout the day but at a lot lower volume per hour.  An added benefit of this is that we can work in almost 4 hours chunks of time, which means almost 4 hrs of sleep at a time!

The surgeon wasn't able to get us on the schedule for this week, so we have another week or so of the ng-tube.  We are getting more and more excited to have that off of his face.  The GI doctor was also encouraging that it may relieve some of his symptoms.  Just as we are getting ready to take one thing away, we are adding another.  Tomorrow Lalito gets his helmet, that he will have to wear for the next several months. 

Please pray for our cdh friend D - he is back at Hopkins and developed some new issues.  He and his family can really use any prayers and good thoughts you could send their way.

Happy Valentine's Day!

My valentines!!

GTube

The big news for this week is that we have decided to get Lalo the gtube. This will get the ng tube off of his face and out of his throat. Since he tries daily to take it out on his own and has managed to at least once, we are anxious to have it done. We met with our surgeon this week and he was very reassuring that this is a much more humane way of eating and will hopefully relieve a small portion of his reflux issues since he won't be gagging on the tube anymore and the ng tube kind of takes away some of the natural pressure of the valve in the esophagus.

We have been playing the weight gain roller coaster over the last week or so. We have a nurse come visit twice a week to check in and weigh him. We went a whole week with zero weight gain which was concerning to his pediatrician and us. Babies naturally grow about a 1/2 oz - an oz every day. His throwing up has seemed to get worse since we've gotten home and is frequently projectile. We are struggling to figure out why it got so much worse and how we can fix it and get Lalito on a good path of gaining weight. We have a meeting with a GI specialist at Hopkins this week and we are hoping he may be able to give us some good insight. For now, our surgeon was comfortable with no surgical interventions other than the gtube. In fact, he thought Lalito was such a good size that he didn't believe he is throwing up as much as we say.

We are getting more and more settled in at home. It is an amazing thing not having to go to the hospital everyday. Our days are busier in a way, but much more calm at the same time. Luckily, Lalo is taking some medical leave at the moment so he is able to get to most of the doctors appointments. This week is an especially busy appt week - Monday is the pre-op appt and synagis shot (rsv antibody) at his pediatrician in the morning and the GI visit in baltimore in the afternoon. Tuesday we get his helmet. Wednesday we are hoping he will have surgery. Friday is the pulmonary doctor at Hopkins. We have also packed lots of fun into our weekend, catching up with friends and visiting with some family.

Happy birthday Tommy and Daddio/Grandpa!!

Sent from my iPhone

Firedog

Basco helps with tummy time

Neighborhood watch

Look ma! No tube in my nose ;)

Our 1st week home

We survived our first week home!  But barely!  We didn't end up leaving the hospital until Monday afternoon last week, which didn't give us much time to get settled at home before we picked up Caleb from daycare.  We quickly figured out how many meds we had to give in a day (16 various doses) and how much time goes into Lalito's feeds (20 min set up + 10 min clean up x 8 feedings a day).  By Wednesday's visit to the pediatrician we were exhausted but finally starting to figure some things out.  Then it started to sleet and then snow, which I thought was fantastic so we could all spend our first cozy day at home together.  Then the power flickered...and then it went out...and stayed out.  An interesting curve ball when learning how to take care of a 4 month old with medical needs and a energetic 19 month old ;). We bundled everyone up and camped out in our room.  The next morning we decided we needed to get somewhere to charge our stuff (particularly the Lalo's food pump, which we didn't really want to find out the battery life on) and get warm.  Luckily, our good friends had power and invited us over.  We packed what we could fit around the 2 carseats and 90 lb dog and made ourselves cozy at their house.  Apparently we also packed our bad luck because the power went out there just a few hours later ;-) oh well, we were thrilled to take advantage of their fire place and the extra help -- thanks Veronica and Josh!

We are still trying to find our routine and figure the best ways to get everything done.  We seem to be perpetually late on his feedings or his med schedule, and are really not big fans of the whole waking up every hour or two throughout the night to start or stop his feeding.  We had a nice visit with our pediatrician and feel like Lalo's care is in great hands.  We also discussed with her the game plan for the 10 doctors (seriously!) we need to see in the next few months. One of those will be the surgeon who did Lalo's hernia repair to his surgical follow up.  The other day we discussed with him having him do the g-tube surgery (a feeding tube that goes into his stomach through a small button on his abdomen).  We are anxious to have it done.  We can tell how uncomfortable it is for Lalo to have the ng tube taped to his face and going down his nose and throat.  We both feel strongly that we won't make any progress on oral feedings until we can get that out. Hopefully, it will also ease his reflux slightly.

 

We are unbelievably happy and grateful to have Lalito home.  It is so nice to have our family all together.  And we look forward to Lalito being able to meet his friends and family.  We are happy to have visitors, but just wanted to give a friendly reminder to help keep him healthy.  Please be over cautious and bail on us if you are not feeling well or if someone close to you is sick - a cold for you or me can quickly turn into pnemunia for Lalito due to his history of lung issues.  Oh, and don't be offended if we spray you down with Purell when you come in the door ;-)