Saturday, July 4, 2009

The Emotional Aftermath

Hank is unhappy. Hank is crying. Hank just wants to go home! Everything hurts, itches or just plain "bugs". He has one drainage tube coming out of his back and one out of his head. They are in the way. They are uncomfortable. Let's face it...they are weird!

Yesterday afternoon, they moved Hank from ICU to a regular room in the pediatric ward. It was a nice little milestone, meaning Hank's recovery was going well. But it also meant moving from the quiet, somewhat spacious and one-to-one nurse/patient a tiny closet-sized room, with a roommate and the five-to-one patient/nurse ratio.

Poor Hank, so brave and so stoic through all the pre-op stuff, day of surgery and even post surgery, has found himself in this strange environment, with other sick kids, nurses and doctors taking his vital signs at all hours of the day and night and a needle in his hand, attached to an IV, prohibiting him the freedom to move around. The incision on his back really hurts and he can't use his right arm at all. Add to that the drains and "popcorn" stitches on his face, and you have the makings of a kid nightmare!
Hank woke up from a nap, with tears streaming down his face, "I want to go home, mom". My heart aches... "Me too," I tell him. "I want to go home now!" Hank cries. "I know, me too, but we have to wait until you are better," I reassure. I don't think anyone is prepared for the after effects of surgery. Particularly a child. But I have to admit, even though I researched the surgery, talked with the surgeon in great detail and talked to parents who's children had been through it, I was ill-equipped for how Hank would feel emotionally. Hank is upset, in pain and blames me. I leaned in to kiss him and he hit me in the face and pushed me away. And all my strength and resolve crumbled away and I sat and cried along with my child. "What have I done? Look at him! So miserable and in pain! This is my fault!" Finally Hank said to me through his tears, "Why are you crying mom?" "I'm crying because you are crying and I feel so bad," I told him. "Stop crying!" He said, his voice laced with irritation, "You are making ME cry!" And so I pulled myself together and stopped wallowing in misery. (at least while Hank could see me...)

Hank stopped his crying for the time being, but off and on during the next 24 hours, Hank would express his misery and plea for the "pipes" to be removed from his head and back.

Hank has continued to do well in his physical recovery, and has even had some visitors besides doctors and nurses. The first visitor was Reverend Stephen from the Episcopal church. He stopped by when Hank had first come out of ICU and said hello and prayed for Hank. The next day he came by to check on us. He was so nice and we found out he is a native New Yorker. He gave us some ideas of where we could take Hank after he felt better. And he said he would pray for Hank as well.
The second visitor was Rabbi David. He told us that his paper had us listed as "religion unknown" and asked us our denomination. "We are Catholic," we told him. "Would you like a priest?" Rabbi asked. We told him we would, but that we will take prayers from anyone willing to give them. And so Rabbi David met Hank and said the nicest prayer for Hank and for his recovery. We are grateful that these good men took the time to meet Hank and pray for him!

Jeff moved us from the Marriott to the apartment across the street from the hospital. He was able to get settled in, shower and join Hank and I at the hospital right after dinner. While Jeff visited with Hank, I ran down to the cafeteria and grabbed a bite to eat. I gave my mom a call and cried on her shoulder about Hank's unhappiness and the helplessness I was feeling. Sometimes just hearing my mom's voice is all I need to feel better! And so with her empathy, I once again pulled myself together so that I could get through the night with Hank.

My sister, Patty, heard from mom that Hank was unhappy and so was I. She sent me some text messages to encourage me not to take anything personal, that it was the medication talking and that we would get through this. Her words helped me see that Hank is not himself right now and as a kid, probably feels like he will be like this forever!

I spent Friday night at the hospital with Hank. (Jeff spent Thursday night there) It was a long night, with the nurses and techs coming in and checking Hank's vital signs. I still have my cough and would try to suppress my coughing fits, so as not to wake the little boy and his mother in the next bed. But as you know...suppressing a cough only makes a coughing fit worse. So for me, much of the night was spent sucking on a cough drop and trying to will my body to cough no more!

Saturday came bright and early as the nurses all show up at 6:30am to administer medications and check vitals. Once again, Hank was upset and cried about wanting to go home. The nurse told us that she thought that might be a possibility and that the doctor would be by soon.

Hank's breakfast came and he didn't want anything they offered. Luckily, on Saturdays donuts, bagels and coffee are donated from "Dunkin' Donuts". So Hank had a very nutritious breakfast of two donuts. But at this point, I just want the kid to eat and will pretty much do whatever it takes to make him happy, if only for a moment!
The doctor came by to check on Hank. He checked his face to make sure it had a pulse, had good color and was soft. He looked at the drains, incisions, sutures and them made the most important statement of all..."I think Hank is ready to go." He said that Dr. Siebert had mentioned that Hank would probably be ready to go to the apartment by Saturday and he would go call him to confer. But in his mind, Hank looked ready and based on his emotional state, he would recover faster away from the hospital.

Wow! Great news! Hank was so happy! After a brief time, the doctor came back and said, "Yes, Dr. Siebert agrees. You can go to the apartment and then Dr. Siebert will see you on Tuesday." The doctor removed the drain and "pipe" in Hank's head but said the drain in his back would need to stay until Tuesday. Hank begged the doctor to remove the stitches, but was told he had to wait until Thursday.

I called Jeff and asked him to bring a button down shirt for Hank to go home in. It took a few hours...more checks of vital signs, antibiotics given through the I.V., and discharge procedures. Hank's nurse, Jennifer, taught me how to empty the drain, and what to look for in terms of warning signs that something has failed in the flap surgery.
At 12:00 noon, a Hawaiian shirt-clad Hank sat in a wheelchair and said his goodbye's to the nurses and other patients in the pediatric ward. We left the wheelchair at the door and Hank made the walk across the street to the apartment. Jeff decorated the walls with the Spongebob appliques that I bought and lined up Hank's stuffed animals on the back of the couch. It was such a nice little "homecoming".

The first thing Hank looked for was the mirror. I put a stool in front of the bathroom mirror and Hank saw himself for the first time. He was upset with what he saw. "I look weird!" he exclaimed. I'm sure that Hank is wondering what the hell happened to him. He didn't look that bad before surgery. I don't think he really noticed his atrophy and now the left side of his face is extremely different. They put in more tissue than needed to make sure it "takes", so instead of being atrophied on the left side, it is fuller! And still somewhat swollen...add in the bright yellow foam pieces that the sutures are tied onto, (to prevent scarring) and he DOES look weird!

But we will all get through this and I know Hank will continue to improve, both physically and emotionally. He has been through a lot. We never dreamed that we would one day need to go to New York and stay in a hospital. But thanks to Dr. Siebert and the good doctors and nurses at NYU Medical Center, we survived! And so at this point, we are grateful for where we are...Hank is watching "Star Wars, Return of the Jedi," with Jeff and I...and Lucy and Charlie are doing OK at home with Granny...the worst is over.

And so we celebrate this Independence Day as not only the day our country gained it's freedom, but also as the day that Hank gained his independence from the hospital and perhaps even the freedom from Parry Romberg Syndrome!


  1. wow....

    just... wow...

    what an incredible story you guys are living!...

    hmmm, I don't know if it will help, but... when you get down, or frustrated... just imagine seeing Hank's face when he heads out the door for his high school prom, when he gets his degree, and when says "I do...", and all this heartache, worry, and hardship will seem insignificant. All of your friends and family want nothing but the best of outcomes for you guys... we are all rooting for you!

    :) xo Kerry

  2. I really miss Hank and all my prayers are with him. I have been thinking about him a lot lately and I hope he's better soon! I can't wait until he comes back home so I can see him again and give him a hug! You are doing a great job Aunt Terri and Uncle Jeff!


  3. Wow. All I can say is Hank is a great kid and lucky to have you as a mom. I'm praying for you both.

  4. Hi Terri,

    Love your blog -- brings back so many memories. Tell Hank I especially love the hawaiian shirt. What a handsome little man you have! Can't wait to meet you guys!

  5. We extend all of our love & prayers to you, Hank & Jeff.

    We look forward to seeing you back at home in EG & love you all sooooo much!

    xoxo The Hopkins family