First time home!

The day finally came and Alan got to be discharged to see his home for the very first time. It was a long day. The hospital was new and didn't have all the kinks worked out as far as discharge procedure and prescriptions. Finally got out of there though. Alan tried out his carseat, got dressed up and loaded up to go home. His nice grandma went and picked up his prescriptions during rush hour so he could go straight home.

He had a good drive home. Of course there was traffic but he hung out in his carseat and enjoyed all the new sights busting out of the hospital.

Finally safe at home, things were crazy for awhile. Alan worked very hard trying to grow. Every three hours he took some food in - first by breast or bottle and then from his ng tube. He got it out pretty quickly but still visited the pediatrician all the time to have his weight checked to try to grow him a little bigger. He got comfortable finally being at home. He slept in a cradle in mom and dad's bedroom. Kept mom company during the remainder of her maternity leave.

Recovery

Waiting for Alan to get better felt like a slow and agonizing process. Little did we know at the time - a month long hospitalization isn't so bad.



Alan got his chest closed up with staples.

Then started to open his eyes.

Got extubated and switched from ventillator to Cpap machine. One of our favorite nurses, Sarah, made a cut-out binky so Alan could keep it in his mouth even with the Cpap.

And of course learned to make spit bubbles. A very important skill.

And finally - started breathing on his own and getting fed mommy's milk.

And got snuggles from dad.

And finally got to move up to some sweeter digs. Left the CICU and got a penthouse 9th floor set up in the CPCU.

Sweet crib. This is Alan getting one of his feeds. He went home on about half feeding by mouth, and half by tube but caught on pretty quick to where he didn't need the ng tube.

Surgery Day

Alan's first surgery was a very long day. We hugged him and said goodbye early early in the morning and watched him wheel back to the OR which is luckily only feet away from the CICU. We spent our time in the waiting room with the grandmas and grandpas. The plan was to complete the procedure without having to go on the bypass machine. We were getting hourly updates from Esther, the surgery liason. We got news that he was done and that his chest was being closed up.

Then.. next thing that happened, Esther came back out and pulled us to a private waiting room to talk with us. Apparently right as he was being closed up, he started de-sating and all his numbers went crazy and they didn't know what was going on but had to put him on heart-lung bypass and go back in. We were terrified. The next update was that Dr. Campbell, the surgeon, had found that the shunt had clotted. He had to go in and re-do the shunt. It turned into a very long day. Finally he was done and able to be taken off the heart-lung machine but had to have his chest left open for a few days because he was too swollen to be stitched back up. Finally at the end of the day we got to see Alan.


He was in rough shape that night and for the next several days. He was on the ventilator. He had tons of meds going into him - about 22 was what we counted. Three chest drains, which pull out excess blood and fluid. He had a Foley catheter in for urine.










Alan's chest stayed open for several days. The opening was covered with a patch. The cool part was that you could see his heart beating beneath the patch. He was very swollen and puffy. We were warned before seeing Alan post-op that he would be difficult to look at. Honestly though we were pleasantly surprised. It was such a relief after that day just to see him.