Revision Surgery Day!

Today started bright and early. Jeff was up at 6:00 and I was up at 6:30am...brutal since I went to bed at about 3am and found I just couldn't sleep. Too much adrenaline the night before surgery...

We got the kids up shortly before we had to leave to head to the hospital. Hank couldn't eat or drink anything and we wanted to make it as easy as possible for him. We got everyone dressed and headed out the door to catch a cab, which isn't easy when you have 5 people and must wait for a van-sized taxi! This time, the surgery was at Lennox Hospital, which is out-patient only.

It's also called "The Manhattan Ear, Nose and Throat Hospital" and was established in 1858...a beautiful brick building on the upper East Side. It was a really nice place for Hank to have surgery.

We checked in and planted ourselves in the waiting room. Kids, jackets, Ugly Dolls, books...we were set to wait awhile! They finally called Hank's name and would only allow me to accompany him until he was shown into a surgical prep room.

We were taken into a small room by nurse Margie, where Hank could change his clothes. They actually had a kid-sized gown and kid size lounge pants for him. Very nice, since last time he was swimming in his gown. I bagged up Hank's clothes and jacket and stowed them in the locker assigned to us. However, I failed to actually look at the locker number and for the rest of the day when they asked me what locker we had, I would just stare at them blankly.

We were then walked around the corner and Hank sat down in a sheet covered recliner and given a warm blanket to drape over him. The admitting nurse, Adele, introduced herself and proceeded to ask a lot of health questions. She took all of Hank's vitals and asked him if he knew why he was there. She verified Hank's identity and asked him to spell his name. Hank's legal name is "Henry" and that is what was written on all her documentation. "H-E-N-E-R-Y," he told her. Hmm ...she looked at me, "Is that right? E-R-Y?" "No, no," I replied, "he just never goes by that name and is not sure how to spell it." We told her he goes by Hank and for the rest of the day, he was called Hank, thanks to the yellow post it note on his folder that said, "Call me Hank!"

After Adele finished with us, she told me that she would wait with Hank, while I went out and got Jeff and the little ones. I found them in the lobby, Jeff sitting with two sleeping children. I stayed in the lobby while Jeff went in to see Hank. This would be the only chance for Jeff, Lucy and Charlie to see Hank before he went upstairs for surgery, as they don't allow children up there. I felt so bad for the little ones, that they would miss their chance to hug Hank and he wouldn't have a chance to see them. And I was wondering if I should wake them up, when they both opened their eyes and sat up! I grabbed them and quickly walked them back to see Hank.

They were all happy to see each other and I could see the wheels spinning in their little heads, wondering why Hank was wearing pajamas and was in a bed. The nurse brought us an extra chair and we crowded into the little room. All three of them had their new "Ugly Dolls" and Hank entertained them with the dolls, putting on a little show and making them laugh. It struck me, that here is Hank in need of attention, and he is putting his siblings first. I made a mental note to remember that...and to recognize what a good brother he is...proud moment...!

After about 20 minutes, two nurses came in and said it was time to take Hank up to the surgical floor. They had given me a blue surgical suit (also known as the "Bunny Suit") to put on over my clothes and stood there while I put it on...I would like to say I did it smoothly and with grace...but not the case, as I tried to balance on one foot while strategically placing my boot-clad foot through the jumpsuit pant leg. Charlie and Lucy and Jeff all said their goodbyes, and I promised Jeff I would text him to keep him in the loop. They took us upstairs to the second floor to the surgical waiting area. We had a very nice and attentive male nurse. He set Hank up in a recliner and then brought over a portable DVD player with a movie, for him to watch.

As Hank and I sat there watching "Curious George" on the player, a man wearing scrubs came up and said hello. He introduced himself as the anesthesiologist. He started talking to Hank, asking him what kind of surgery he was having. He asked Hank if he remembered anything from his previous surgery. Hank told him that he remembers being wheeled into the operating room and the mask over his face, as well as the ceiling. I was blown away! I didn't think he remembered anything! After the dose of "loopy juice" that made his eyes glaze over and compelled him to say, "Let's get this party started!" while throwing up a rock star fist, I didn't think he even knew where he was!

The anesthesiologist was a very personable man, and did not talk down to Hank, which is always appreciated. He asked Hank if he had any questions or concerns. Hank told him that when he woke up last time, he had goop in his eyes and it was hard to see. He really didn't like that and wanted to know if they were going to do that again. The doctor explained that usually they tape the eyes shut, but where they were operating was close to the eyes and the tape would be in the way. He explained that when you are asleep during surgery, your eyes don't blink and they dry out. The "goop" is to keep the eyes moist. And for the first time in all of this, I saw Hank's eyes fill with tears. He struggled to gain control, blinking the tears back and willing them to stay in his eyes...but when the doctor said, "yes, I will probably have to use that goop again," the tears started to escape from his eyes. Hank quickly wiped the tears before anyone could see them and again I watched him struggle to stop his emotions. And he did it! I knew that was hard for him...he HATED that goopy stuff. It was greasy, and it made his vision bleary, making him think there was something wrong with his eyes...that is scary! But he accepted that it was the only way, and let it go...

I then learned that our anesthesiologist, Dr. Gingrich, had surgery when he was two. From that moment on, he knew he would be a doctor. And a few subsequent surgeries when he was older. Because of his experience, he believes in treating each child differently, assessing their comfort level and level of understanding, before he talks with them. I loved his approach!

Dr. Siebert soon arrived and I'm not sure, but I think I heard a fanfare of trumpets upon his arrival...or maybe I just imagined it... He came right over, big smile on his face and said hello. He made a few notes, signed Hank's left temple and took a long look at Hank's face. "OK," he said, "I'll see you soon!" And he went off to make notes and prepare.

And with that, they got Hank up, and we walked down the hall to the operating room. Dr. Gingrich was with us and Hank looked around as the doctor sat down and started showing Hank all the machines. He got Hank up on the table and asked him if he would like to fall asleep sitting up or lying down. Hank said he would lay down, and the doctor explained the process, and how all the machines worked. I could see that the surgical nurse was getting impatient as her eyes rolled back in her head, but I greatly appreciated all the time he was taking with Hank to make sure he was comfortable and ready. Hank finally laid down and held the mask as the doctor started a low stream of anesthesia. Hank's eyes started to grow heavy as the doctor talked to him and stroked his brow. I leaned over and gave Hank a kiss and told him all would be well. And just like that, he was out.

The nurse shuttled me out when Hank started to react to going under. He started to flail around a bit and I tried to tell her that I had seen this before and I expected it, but she got me out of there quick! Tears welled up in my eyes...Hank looked so small on that table. I knew what to expect...we've done this before...but something about seeing that little skinny kid on an operating table just really chokes me up. As we went out the door, we almost ran into Dr. Siebert. He took one look at me and gave me a big bear hug saying, "He's going to be fine. We will take great care of him!" I told him I knew that...and thank you. He told the nurse to have me go to the recovery waiting room on the operating rooms floor, so I would be there when Hank came into recovery and Dr. Siebert could find me.

The nurse led me through the recovery area, to a small waiting room with a TV. I told her that I needed to go downstairs and get Jeff and the kids. She said OK, and walked me to the elevator, so I would know the way next time. I went downstairs and found Jeff, Charlie and Lucy in the lobby. I filled Jeff in and he said he would take the kids to Central Park to burn off some energy. One of us had to stay, so I grabbed a cup of coffee and headed back upstairs. But first I text messaged almost everyone in my cell phone to tell them that Hank had gone into surgery. It was 10:30 am...a half hour behind schedule. They had told me three hours, so I figured on 1:30pm.

I spent the next few hours texting with concerned friends and family members, trying to keep everyone involved. Jerri Wood, Hank's teacher, texted me and asked if she could have the kids in chapel pray. I said of course, and I was so pleased to know that while Hank was in surgery, all of the third, fourth and fifth grade students were praying for him, along with their teachers. I got out my Rosary, and prayed myself.

Shortly thereafter, and a half hour early...Dr. Siebert came bounding into the room with a broad grin, saying, "Hi! Want to see him? Come on!" I jumped up told him I needed to put my "worry beads" away. "Were you worried?" he asked. "No, I just like to pray," I replied. And in truth I wasn't worried...have never been while Hank is in surgery. I know he is in great hands! But I am praying for a miracle...and when you know that at least 500 people are praying for your son...you pray too!!

We walked into the recovery room, and there was the Dr. Gingrich and Hank, who was sleeping peacefully. Dr. Siebert told me everything went great. That he injected steroids into the scar on Hank's back to try and lessen how raised it is. That he took fat from Hank and inserted into his upper lip, he did a lower eyelid raise and moved tissue around the middle of his face, giving him a mid-face lift. He also pointed out that there was plastic wrap on Hank's face, to act as compression. "How long does that have to stay on?" I asked, "Until we take out the stitches next week," was the reply. I know Hank...that plastic wrap is going to drive him crazy!! Poor kid!


Both doctors told me they were very pleased with the surgery. Hank looked so good... I looked at him, picturing what he will look like when he is healed. Dr. Gingrich suggested we just let Hank wake up on his own, so I sat down on the chair and started text messaging everyone. I wrote to Jeff and let him know that Hank was out of surgery. Jeff said he was making his way back with the kids and would see us soon. Hank slept for another half hour or so, and then all of a sudden opened his eyes. He looked dazed and somewhat confused. He blinked and looked at me. I realized it before he did, but there was no goop in his eyes!

Hank was upset. He wanted to go home. Waking up from surgery is no fun, and this is where Hank has a hard time. He said his face hurt really bad and I asked the nurse for pain medicine. She said none was prescribed but she would work on it. Meanwhile, Hank started to come out of the grogginess, and he wasn't quite as upset. The nurse came over with the meds, only to have Hank say, "I am fine. Never mind, I don't need it!" I think that the plastic wrap is what made him think his face hurt...it felt weird and he wasn't used to it.

By the time Jeff and the kids showed up, Hank was sitting up in bed and had a crazy-looking ice pack tied around his head to reduce swelling. Lucy and Charlie stared at him, wondering what that thing was! A nurse came up and said they couldn't be up there, and we said "OK, we just wanted them to see each other really quick, since Hank was asking for them." The next thing we know, the nurse is pulling the curtain all the way around us and says, "It's OK..they can stay." We were so grateful. The kids needed to be a part of what was going on.

Dr. Gingrich stopped by to see Hank. "Did your eyes feel better this time?" he asked. He explained that he flushed them out after surgery. He seemed so pleased that he had thought of that. And Hank was grateful that he had! Dr. Gingrich had a surprise for Hank. Since Hank was so interested in everything, and loves science...the doctor bagged up the tubing from the respirator, the mask and the heart monitor patches for Hank to take home.

But being four and five, Lucy and Charlie got bored and it was time to get them out of there. Jeff went back to the lobby and I accompanied Hank down to the final room before discharge. They let the whole family back in and the nurse brought Lucy and Charlie a soda along with Hank's drink. Finally, Hank got a chance to eat something. Poor skinny kid went 19 hours without food and almost that long without drinking anything.

After another 45 minutes, Hank was discharged from the hospital! Jeff helped Hank get dressed, as Lucy, Charlie and I waited in the lobby. It was so surreal to see Hank come walking out in street clothes, with his jacket on, ready to go. And it was so exciting!

We headed out to the street and tried to find a cab. We ended up having to walk one block down and two blocks over to get on a major thoroughfare. I walked arm-in-arm with Hank as he shuffled down the street. "No death marches, Mom" he remarked. Guess he remembers the last trip.... We finally hailed a cab that we could all fit in and climbed in. Hank and Charlie immediately fell asleep, and Lucy was close.

As we drove back to the apartment, I marveled at how different this experience was. No drains in his head...no overnight stay at the hospital...truly different. But at the same time, I started to feel the apprehension of taking care of someone who has just had surgery!

We got back to the apartment and woke the kids up. Hank immediately took of his coat, sat on the floor and started looking at all the respirator tubing that Dr. Gingrich had given him. We finally got everyone to lie down by putting on a movie. Hank said he was hungry and wanted pizza. And that is what we had! Less than seven hours after surgery, that kid was scarfing down pizza and drinking root beer! Amazing!

We have been watching Hank closely and we have been icing his face regularly. But I see the black eye appearing around his left eye and the bruising on his cheek. But I also see a beautiful upper lip, where there was none. And I see two eyes that are now even. And a sculpted and defined jawline. I see the face that was whole, before Parry Romberg Syndrome started to take all that away.... But more than all that...I see a boy who is growing up before my eyes. Who exhibits more maturity than many adults. Who inspires people to bravery. Who shows great compassion to others.

I see a boy who inspires me to be a better person. To act when I am compelled to do something. Hank remains stoic and brave. Courageous and strong. Don't get me wrong...he is still the same kid...the kid who was crying a little while ago because his eye is swelling and hurts and the plastic wrap on his face itches... But any of us would feel the same way. Hank has shown me the big picture. He has shown me what is important in life. I am honored to be Hank's mother. And I thank God everyday for giving me this family...to love and to learn from.