BUMPED !!!!

Sorry for not posting this sooner, been very crazy the last few hours but Declan's Fontan surgery was bumped. Declan was discharged about noon or so yesterday and we had our instructions to return the following morning (today) at 7am for surgery prep. We decided to get a bite to eat together, and about two hours later we received a call informing us that some emergency cases had come up and we were getting bumped. We were beside ourselves, we had been mentally prepared for what was going to happen. Family and friends had gone out of their way to help, and Tammy had put a tremendous amount of energy and effort to put all the pieces together so our family could run smoothly while we were gone. Then to suddenly have it pulled out from underneath us was awful. We were frustrated, angry, and disappointed to say the least. So the new plan is to have surgery on Monday May 8th. We will keep everybody posted. Thanks for all your love and prayers!

Trucks, Jeeps, and Hospitals

Sunday morning I woke up at about 1:30 and just lay in bed, trying to fall back asleep, knowing I had just 2 hours of precious sleep left until waking up at 3:45 am to get ready in time to catch a plane.  Declan had taken his usual position next to me, nuzzling in his head against mine and I could hear and feel his breathing, always needing body contact. As I felt him next to me I reflected on contrast of the last few days to the days lurking ahead.  We had spend the last 4 day as a last ditch effort on a relaxing family vacation before the ensuing chaos surrounding his Fontan surgery on the 26th. We had crammed a lot into a few days. I felt like Declan's toy truck. He didn't have any people to stuff inside, so used the next  best thing: lemon pieces, and other vegetable surprises. But he stuffed it!

Tammy and I had wondered if we had crammed too much in the last few days. We had just driven up to Boston on Tuesday for a presurgery workup, back to Connecticut, then woke up at the crack of dawn Wednesday to drive to New York to catch our plane to Florida.  But the Florida decision had been a good one. We spent 4 days lounging around and playing in the beach and pool. Declan and his sisters had a terrific time with their family and cousins. Despite the timing of it being close to his surgery, the break was needed and it provided a great opportunity to spend some much-needed family time. One of Declan's favorite moments was being crowned with a balloon hat, complete with orange Jeep. 

Fast forward to today, Declan had his Catheter in preparation of his Fontan Surgery. The primary purpose is to ensure the lungs have correct pressure, since post-surgery he will only have passive blood flow back to the lungs - no heart pumping the de-oxygenated blood. (The heart will only be used to pump oxygenated blood at that point.) So the lungs cannot have too much resistance, otherwise, the surgery wouldn't work. We arrived at the hospital this morning at 6:20 - checked in and raced hotwheels around the waiting room until his name was called. Tammy and I watched as he was injected with meds. At that point I began tearing up, thinking - here we go again. And I knew there wasn't much risk with a "Cath" but it was the memories of surgeries past, and the upcoming Fontan that triggered the emotions. But it was cute seeing him get smiley and groggy.  (The photo below is a pre-med smile)

About 3 hours later the Doctor gave us the lowdown. The procedure went well. Lung pressures were good. They did notice some narrowing around one of the connections that was done during his Glenn surgery so they will try to open that up a bit when they go in for the Fontan surgery on Wednesday. The anatomy and blood flow looked good for him. Also, the electrical pulses from his sinus node sometimes varied a bit but they think it may have been the anesthesia, but it will be something we will have to watch.  They also closed off some collateral arteries that had grown-but typical for HLHS kids. 

Declan spent the next 6 hours after the procedure on his back. (A requirement to prevent blood clotting.) He was still out for the first couple hours so it wasn't too difficult. But the last 3 hours he was not so happy.  But thanks to Mickey, Blues Clues, Backyardigans, and Tumble Leaf, we made it. The night was capped off with an x-ray, blood draw and now we will try to get him to sleep.

Tomorrow we'll get one evening back at our shared family housing. Now the decision of who sleeps bedside with Declan tonight. . .