It has been a very draining day both mentally and emotionally but we are happy to report that we are all at home this evening and Lily is sound asleep in her crib.  Gina has also headed to bed early for a much deserved night of sleep.  She was up with Lily at 4:30 & 5:30 to try and get Lily to drink some fluids this morning.  Unfortunately Lily wasn’t so interested in drinking at the time.

We arrived at Children’s around 8:00 this morning and they were ready and waiting for us.  The worst part of the day happened quite early as it took 4 separate attempts to get an IV line in Lily.  That was not fun for any of us but especially Lily.  Around 10:00 they sedated Lily and took her off for her cath which probably didn’t actually start until about 11:00

We were updated about every hour on their progress and all of those reports were positive which relieved some of our worries.   After about 3 to 3 ½ hours they were done with the cath procedure and Dr. Baker had successfully coiled one collateral vessel.  He did locate another small collateral vessel but had trouble accessing it and didn’t feel that it was worth the risk to pursue it any further.  The other good news we received was that the balloon dilation that was performed in March looks to be holding up and they are optimistic that Lily shouldn’t likely experience future issues with it.

After her cath and since Lily was sedated they performed an echo on her chest which will eliminate the need to do it at her next appointment with Dr. Dummer so that is a small blessing.  They also gave her a transfusion, as her hemoglobin levels were a tad lower than where they would ideally like to see them. 

At about 3:30 they finally wheeled Lily out to us and she looked very tired but did crack a small smile when she saw Gina – that was priceless for both Gina and me.  We were told that she was an angel the entire time she was awake for them and it appeared that she was receiving lots of attention from the nursing staff.  We then went to the short-stay rooms and laid low.  I stayed until about 5:30 and then left to take Ethan to his last t-ball game and Gina stayed with Lily until she was released at 7:00 and Roger & Charlie came to pick them up. 

It all seems so matter of fact at this point but the quick nature of all of this was quite a shock to both Gina and me.  I know that I much prefer the appointments and Boston trips scheduled weeks in advance.  Modern medicine has done nothing short of amaze us in the past 17 months.

I’ll throw a quick plug in for donating blood and encourage you to consider doing it if you don’t already.  I had not donated prior to Lily’s first procedure and have since witnessed first hand on multiple occasions how important it really is.  You will be saving lives and cost you nothing. 

We’re optimistic life is back to normal again tomorrow and hoping things should remain status quo until Lily’s Fontan procedure next summer.  Lily will go in for a chest x-ray follow-up on Friday or Monday to be sure everything is where it should be and that there aren’t any further issues to correct.

Thank you to you all for the kind guestbook posts, emails, calls and texts today.  Please know that it is very much appreciated.  We hope you’re enjoying your summer and again thank you for all of your support. 

Matt & Gina