Home Sweet Home

So sorry for the lack of a post letting everyone know that we are now home!  Andrew was discharged about 3:00pm on Friday.  We arrived home at about 4:00pm, which was just enough time to run to the pharmacy and pick up the rest of his meds.  Because most of his meds are compounded, they have to be sent to a special pharmacy and they are only open until 5:30pm and are closed on the weekends.  Needless to say, by the time we were home and situated, we were all exhausted.  The weekend was wonderfully lazy.  It was great to spend time together as a family and all sleep under the same roof.  We had some family and friends come by, but mostly we laid around and watched tv.

Home after surgery means developing a new routine.  We have gone from one prescription med (Enalapril) twice a day with a low dose aspirin once a day to 9 medications, some of which are taken 3 times per day.  It is quite the schedule and is taking Andrew some time to get used to.  We have not had issues with taking medications before, but he is a little reluctant at the moment.  They all get down but not without some bribing along the way!  Andrew is home on Enalapril (to help with blood pressure), Digoxin (to help with heart function due to rhythm issues), Amiodarone (to help slow his heart rate to help with his rhythm issues), Lasix (to help keep off fluid), Aldactone (also to help with fluid), Sildenafil (to help keep the pathways to his lungs wide open), low dose aspirin (blood thinner), Coumadin (blood thinner) and Ibuprofen (for pain).  Most don’t taste very good but are little doses (2.5ML or less).  The one exception is the Amiodarone… it is almost 1/2 an ounce (12ML) and is a little hard to swallow.  Luckily, it is only once a day.

We may have figured out the Coumadin for the time being.  Andrew has to go in for INR checks to make sure that his dose is in the therapuetic range.  One of the fears that everyone has is that he will spike high again.  So far, so good!  His level this morning was absolutely perfect at 2.0.  We will go back in the clinic for another check (finger poke) on Thursday.  The goal is to have his level stable enough that we will only have to check once a month.  He needs the Coumadin, but it is a little scary… if he falls and hits his head, it is an automatic trip to the ER for a CAT scan.  Andrew falls a lot… hits his head a lot… should be fun for the next few months!

We also came home on a low fat diet to try to avoid chylothorax issues.  So far so good… he seems to like fat free hotdogs and cheese!  The trick is to get him enough calories that are not fat based and not have him lose any weight.  Not easy for a kid who was on a high fat diet!  We are hopeful that his voracious appetite and newly plumbed heart will help us out.  He has been a non stop eater for the past week!

Overall, it is wonderful to be home!  Andrew is napping and the girls are swimming (he can’t go in yet, so they have to do it during naptime!).  John is preparing for Band Camp at Mountain View this week and I have one more week before going back to work.  Andrew has follow-up appointments in the coming days… another INR check on Thursday, a chest x-ray and surgery follow-up on Friday and a cardiology appointment next Thursday.  Life seems to pick right back up where we left off before surgery… just with a few modifications.  We will keep everyone updated as we continue life post-Fontan!

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