Monday was quite an adventure. We arrived at St. Francis at 6:45 AM, and Daniel was all smiles and giggles. All of the doctors and nurses were amazed, as he had not eaten since 9:30 the night before. At 8:00 AM, he headed back to surgery in the arms of Jeff, the anesthesia nurse.
Surgery went very smoothly. Around 11:30, Duke came out and told us we'd go back to recovery in about half an hour, once he was awake from the anesthesia. Well, we waited patiently (okay, not so patiently), for well over an hour. The nurses called a few times to let us know he was still asleep and they'd let us know when he was awake. Finally, after what seemed like forever, the nurse called to say the tube was out, but they still had an oxygen mask on him, but we could come back if we wanted. So, excitedly, we headed back. Once in recovery, I was able to hold him as long as I kept an oxygen mask over his face. Occasionally we'd have to stimulate him and hold his chin up to help him get enough oxygen, but that was staring to not do the trick. Our nurse, God bless her, realized long before we did that things were not going well. She starting paging people long before I figured out there was a problem . . . and anyone who knows me knows my level of paranoia. As she took him from my arms, things moved very quickly, and I'll never hear the words "crash cart" without my heart jumping again. I glanced at the pulse ox, and saw his oxygen level was in the teens, and he was not a pretty color. We were shooed out, but allowed to wait just outside of recovery. I'm not sure how long we were out there, but it seemed like a lifetime. His carbon dioxide level was in the 60s, making it hard for him to get enough oxygen. In the end, they were able to get his oxygen level back up, but Dr.
Hagerty (we call him Duke), who was as devastated as we were, wanted him transferred to
MUSC's ICU. St. Francis doesn't have a
PICU, and he was concerned something might happen during the night. So off we went to
MUSC.
The transport team from
MUSC came and had him safe and secure for the ride. One of the nurses from the team was Mark
Daniell, so of course, we needed a picture for the Book of Daniels. We figured last names count. Before you think, what a nutcase I am for taking pictures, at this point, we knew we were out of the woods. Everyone was much calmer since he did not have to be
intubated again.
Daniel slept through his first ambulance ride. We thought he would spend a few hours in the
PICU then be transferred to a regular room, but in the end his doctor wanted him there all night . . . and what a long night it was! We had packed for our room at St. Francis, so we were not prepared for our lack of accommodations at
MUSC. We took turns at his bedside, sneaking in a few hours of sleep each here and there in the waiting room, along with a few other parents. While there, we had three fabulous nurses. Everyone was amazed at how good natured Daniel was, including us. Finally, Tuesday afternoon, I was allowed to hold him again. It was heaven. Shortly after that, we were released. I felt a twinge of guilt, as were surrounded by children there for weeks and months, with no end in sight. It was heartbreaking. Father Frank came to visit us, and my dad brought us dinner, as he always does when anyone is in the hospital. I was able to see Pablo's baby sister Gabriele, who was born at 26 weeks. She is in the
NICU, and her parents let me visit. She is so tiny and beautiful, weighing a tiny one pound 14 ounces. She is healthy, but she needs to do quite a bit of growing before she can come home.
At home, Daniel was happy to sit in his bouncy chair. We had taken it to the hospital, but alas, he could not have used it since he was so heavily medicated. We learned quickly that he breathed better flat on his back instead of upright.
We've discovered this surgery was much easier with a three or four month old than an almost five month old. Daniel had full use of his arms and hands, and was quite capable of using them to soothe himself. He enjoyed rolling over onto his side as well (but not over yet). A few weeks ago, he did not have these skills. With his arm restraints, he can't do either of these things, and he wants to make sure we know it. He registers his protest
frequently, as well as his sadness with the world. I assure him it won't last forever, but I don't think he believes me.
Today he went to see Duke, and he removed the tape so we could admire his handiwork. What a handsome boy he is! He was re-taped, and he goes back next Friday to have the tape removed for good, and hopefully to be released from arm restraints! Currently, he is only eating about half of his normal amount. He uses a special bottle with tubing attached, and we squeeze the milk into his mouth. He prefers his regular bottle. He does not sleep well in his crib, so tonight we are thinking of keeping him in his bouncy chair. He usually keeps his arms by his side when he sleeps in it, so he doesn't mind the restraints as much. In his crib, he seems more determined to get them off (quite successfully). We are all counting down the days until he can be free again!
On February 15th, we packed our bags and headed to St. Francis with Sarah for her fun & exciting gum line closure. This is the last step (usually) in the cleft repair, so we were all excited! We'd been through the lip repair, soft palate, and hard palate (twice repairs. Her arch had been expanded beautifully, thanks to Dr. Vincent, and she was ready to go. Dr. Hagerty removed some bone from her hip, and Dr. Strauss packed it in her gum line. Everything went smoothly. 
