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 ;-)