Wednesday, October 3, 2012

4th Surgery Day

Surgery is over and we are settled in Hank's hospital room. It's been such an emotional day, I don't even know where to start.  The day started out great.  The kids slept in, despite the fact that construction is going on across the street...heavy duty...with trees being ripped out, trucks beeping as they back up and lots of thumping and banging. Hank spent the morning playing video games at the Ronald McDonald House, as did Lucy and Charlie. By 11:30 am, we were out the door and walking to The American Family Children's Hospital. We checked in on the third floor and were taken to a private pre-op room. For the first time, the whole family was allowed in the room, and the kids all played DS games while we waited.

A bubbly nurse named, Christine, was the first face we saw. She went through the routine questions with Hank..."why are you here?", "what is your name?"..."when is your birthday?"  Hank answered all the questions, she took his vitals and visited for a moment. Next came the anesthesiologist who was so young, I would swear I have shirts older than her! She was very knowledgeable and personable and we knew she would keep a sharp eye on Hank.

Finally, the man of the hour, Dr. John Siebert arrived! He swept in with a big smile and high fives and hugs for everyone. We haven't seen him in two years and were so excited to just be in his presence! (he's like a rock star to us!) After the hello's, he got right to work talking to Hank and asking how he was doing. He asked Hank if there was anything about his face that bothered him. They discussed that Hank's face is much fuller on the affected side (because of the tissue transfer) and how Dr. Siebert would fix it. Dr. Siebert and his surgical assistant, Luanne then studied Hanks face, and conferred on what they would do in the operating room. He took a few minutes to explain to us that he would be probably be going through Hank's mouth...his cheek...so that he could lift the tissue up around his eye. He also talked about pulling up the lower lid and closing the outer edge. And with some quick photos of Hank and an initial with a Sharpee to Hank's forehead...Dr. Siebert was off with a "I'll see you in surgery!" Things moved fast after that! Before I knew it, they were giving me a gown to throw over my clothes and a cap for my hair. Charlie and Lucy gave Hank a hug and said goodbye, as did Jeff, and we were off to surgery. Doctors and nurses pushing his bed with me trying to keep up at Hank's side...rushing down the halls, through double doors and into the operating room! 

Hank was brave and stoic through it all. But as they put him on the operating table, his demeanor started to change and I could see the apprehension on his face. I happen to think the operating room is scary. It's cold...everyone's hair and face is covered...all you see is eyes looking down at you. And then there is huge lights that look like flying saucers hanging over you...it IS scary! And I knew that is exactly what Hank was thinking as the tears silently slipped under his eyelids and down the sides of his face. He reached up and hugged me tightly. "I love you, Hank," I whispered, "you are going to do great!" "I love you too, Mom," he said and gripped me tighter. It's times like these that I feel the weight of all that Hank has been through...and my heart constricts with sorrow for this child. We released each other and I held his hand as the anesthesiologist put the mask over Hank's face and started to tell him jokes. But after the third joke and he wasn't out...I started to get the first tinge of worry...and then slowly his grasp relaxed, and his eyes fluttered and closed...and he was out.

"Give him a kiss mom!" someone in the room said. I leaned forward and kissed Hank on the temple, told him I loved him and got up to leave. Dr. Siebert's eyes twinkled as he gave me a thumbs up. "Do good!" I told him and moved towards the door, with Tina the Childlife coordinator by my side. As we stepped through the door, I stopped...turned and looked...wanting to remember the scene, exactly like it was. Hank on the narrow operating table, the anesthesiologist at his head...nurses on all sides...everyone bustling around...but waiting for me to leave so they could get to work. And as the door shut, my heart leaped into my throat and I sobbed...leaving my brave boy behind...knowing he was in great hands...but seeing him struggle to keep that brave face all the way through...all the emotions...just wouldn't stay in.  Tina grabbed some tissues for me and with her arm around my shoulders, we made our way back to the waiting room.

I joined Jeff and the little ones in the kids' playroom and for the next few hours we colored with the kids, grabbed a bite to eat, went outside and then sat and waited. The nurse had given us a pager and after the 45 minutes, we got our first text message, "Procedure has started. Hank is doing well at this time." The second message came an hour later..."Still working. Hank is doing well at this time." Pretty cryptic...but good!
Eventually, Jeff took Charlie downstairs and outside for some fresh air as Lucy and I waited in the playroom for the next update. And then...there he was! Dr. Siebert and Luanne were walking into the playroom. "Where is everyone?" he asked with a big grin on his face. I called Jeff's cell phone, but there was no answer...I knew if he saw I had called he would make his way back. Dr. Siebert started to explain the surgery to me, as Jeff and Charlie walked in.

He explained how he went in through the mouth...inner cheek and released the tissue so that he could bring it up around Hank's eye. He also lifted up the lower eyelid and then put in sutures from the lower eyelid, over the upper lid and taped the suture to his forehead. There is no way that eye is dropping now! He said everything went beautifully and he was very pleased. A nurse popped her head in and said, "He's in recovery! He's awake...and he's upset!" We all jumped up as Dr. Siebert said, "Let's go see him!" Lucy and Charlie had to stay behind in the playroom...as siblings aren't allowed in the recovery room. I gave them a kiss and charged out the door behind the group ahead of me.

We found Hank in the recovery area, curled up on his side in the fetal position, and quietly crying. UGH! What is this? Jeff immediately went to Hank's side and stroking his forehead told him, "I'm here, Hank. You did so good!" Hank was crying out that his throat hurt..."Water! I need ice cold water!" he kept saying. And then crying more that his throat hurt so bad. The nurse gave him a cup of ice water with a straw...but nothing was helping. Jeff gave him ice chips, and still Hank cried. He had been given a dose of pain meds and we suggested they try to up it. They gave him another dose and still Hank was in pain. I had to leave, to check on Charlie and Lucy...but before I went, I said, "I think you should just knock him out!" And I think that is what they did...because when I came back 20 minutes later, he was pretty much out and they were getting ready to move him to his room. I took over the forehead stroking as Jeff left to round up the kids and meet us at the elevators. 

The nurses pushed Hank's bed down the hallways towards the elevator where Jeff and the kids were waiting. I was confused...the rooms are just around the corner from the recovery room...where were we going? We got on the elevator and I don't even know if we went up or down...but when the doors opened, we started a long trek...we took another elevator continued to wind our way somewhere...but where? We ended up in the main (adult) hospital...on the pediatrics floor. Wait! What is this? As they wheeled Hank's bed into his room, I felt a sense of panic as I noticed the toilet in the corner and the view of the rooftop. This isn't the nice new wing that we took a tour of? Where are the views with the trees? Where was the private bathroom? Omigosh! I bet they don't have a Playstation like they promised Hank yesterday!! Nooooo! We must move him! But it certainly wasn't the nice nurse's fault and I didn't want to offend anyone! So I discreetly inquired as to why we weren't where I thought we would be. "This is for the non-respiratory pediatric patients that are probably only here for one night," explained the nurse. "Well, I guess that is good," I thought to myself wondering where the bathroom was for the rest of us who would like a door to the bathroom! Especially since I was the one staying with Hank!  I did find the bathroom down the hall...a little bit of a hike, but I could handle it! 
Hank slept for awhile and Charlie and Lucy quietly colored pictures. At one point I looked up and saw Lucy and Charlie standing next to Hank's bed, looking forlornly at him. "Poor Hank," they said. And I realized that they had no real recollection of the previous surgeries...and that for them, it was all new...and startling!  Lucy couldn't seem to stay away from Hank's bedside. She held his hand and looked at him with such sorrow...and then turned to me with tears in her eyes. "My poor brother!" she cried...running into my arms. She cried on my shoulder for awhile and then looked up at me. "I feel so bad!" I gave her a hug and told her that he would be OK. One of the reasons I brought Lucy and Charlie with us, was that we wanted them to learn true compassion...I guess we can consider this accomplished!

When Hank woke up, he was in a much better mood...watched a movie and played his DS with Charlie, while Lucy colored pictures for Hank.  He had a milkshake and seemed to be in pretty good spirits with no pain. By 9:30 pm, Jeff and the kids were ready to go. As I was talking to the nurse, Jeff came out with wide eyes, "Hank's eye is very swollen and looks like it dropped!" he said. "Call Dr. Siebert!" I told the nurse and she placed a call. At the same time, I took a photo of Hank and emailed it to Dr. Siebert. He quickly responded with a "That eye isn't going anywhere! Just keep ice on it all night. It is swelling....which is normal." Phew... Jeff and the kids left and soon after, the resident who was in surgery with Dr. Siebert and Hank, stopped by. She took a quick look and said, "Don't worry..he looks fine. Just ice it. That eye isn't going anywhere. It can't!" OK...I felt better. She said she would see us at 6:00 am and off she went. I have to say, that in spite of the less-than-brand-new surroundings, the care has been outstanding! The nurses are such kind, amazing angels and we're so grateful they are here!
 

Hank and I settled down to watch another movie. He, with ice on his face, and I next to him in a folding chair, working on this blog. After the movie was over, I sat down on his bed, facing him. "How are you feeling, Hank?" I asked, "Can I get you anything?" He reached up to hug me and I leaned into him and gathered him in my arms. I felt his body shudder and could hear the sob welling up inside him. "Oh no! If he loses it, I will lose it!" I thought. (I had already gone to the bathroom three times that evening to have a quick cry!) "What's wrong?" I asked, "Are you in pain?" "No," he whispered as the tears flowed. "I don't want to be here." (Me neither!) I told him we would be out tomorrow and back at the Ronald McDonald House. "Nooo.... I want to go home...back to California!" Hoo boy...can't help him there...we are here for another week! "This sucks!" I announced, "The whole thing just stinks!" He agreed...I told him I didn't like it any more than he did...but we would get through it. He calmed down and we just sat together...

He has slept here and there...but not more than little cat naps. I took the ice off to give him a break. I don't think I will sleep. It's 12:45am now...and I don't feel tired. I just want to sit and watch over him...to make sure that if he wakes up, he knows I am right there. He has been through so much...not only today...not only three previous surgeries...but all of it...looking different...feeling different...being a champion for others...it's a lot for an 11 year old to take in. He's strong...and he's stoic...but he is still just a kid...he shouldn't have to go through this...but as long as he does...he will know that his Mom and Dad are right by his side...watching out for him...no matter what!

19 comments:

  1. Hang in there. We are thinking of you all. Hank looks great, the preswelling pic shows a glimpse of Dr. Siebert's great work. Sending lots of love and prayers for swift recovery and comfort for Hank. You're one tough mudder, Hank.

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  2. He is such a inspiration to all of us with PRS getting PRS as a adult has been hard to see the face you have had for 40 years waste away but I am so blessed by Hank because he is one strong 11 year old I think about the looks I receive and how it hurts but to be a child in today's society where we have such a problem with bullying I think of all the PRS warriors who have had this as a child and how difficult it must be or has been I thank God that I have met some amazing people and even though we met through a disease I always remember that God has a plan for all of us and I believe He has brought us together

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  3. I read every word with great anticipation, as I understand much of what your family is going through. Your account of the day was beautifully expressed and brought back many memories. We are in uncharted waters with our kids with PRS. This is a scary and frustrating disease. I'm grateful that one surgeon, and his team has been willing to LEARN about Parry Romberg Syndrome, and figure out how to intervene earlier than later. Many folks living with this disease do not/did not have this option. I'm very thankful for the information, stories, and friendships through The Romberg Connection, which led us to Madison, WI. Thanks for sharing your difficult, yet inspiring day with all of us, Terri. Sleep well tonight...hugs to Hank and your whole family! Love, Your Colorado friends.

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    1. Terri and Donna--
      Jessica is still fighting the good fight. She had to cancel her surgery with Dr.S because this is her last few months toward her PhD, and it's brutal...with all the things she has to deal with on top of that.

      Donna, it's been years since we've been in touch. I hope you remember meeting me at dinner when you were in town for surgery some years ago.

      If either of you happen to be back in Madison for any reason, I'd love to see you. Good Moms!

      Gail

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    2. Hi Gail! I don't know why I didn't see this comment until now!! So sorry! How are you and Jessica? Will you send me your email address so we can chat? You can email me at:
      Tagibber1@aol.com
      Thanks!

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    1. oops..wrong button. P.S. Give Dr. S a BIG "hi" for us!

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  5. Wow, Terri, quite a story! Brought tears to my eyes :-( I do remember that O.R. scene well, and it was identical to yours!

    So glad that Hank made it through the surgery just fine, but so sorry that he's upset and in pain. Please remind him that each day he will feel a little better, especially after he's released later today. Once he gets settled back in at the RMH, I know he'll feel so much better. It may not be home, but it's the best home-away-from-home you're going to find!

    I have to say that even with the swelling and bruising that have already begun, Hank looks FABULOUS! He's going to bounce back quickly from this and you'll all be so glad to have it behind you.

    Give him a big hug from us, and of course say hello to Rock-Star-Siebert from the Diaz family from Georgia!

    Hang in there, Terri, and try to get some much-needed rest!

    XOXO

    Karen

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    1. Thank you for being my "by-my-side" friend through this journey to Madison, Karen! This was a new one for us, and it helped so much to be able to talk with you throughout! Love you!

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  6. Every time I read about Hank the word that comes to mind is AMAZED. I'm amazed at how he handles everything. Amazed at what a fantastic kid he is when he has to deal with such difficulties. Amazed at what that surgeon can do. Amazed at the strength of your entire family. It's amazing and wonderful and inspiring. Here's to continued healing for Hank, a week that passes quickly with only good progress, and a safe trip home.

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  7. Thinking of all of you and sending good vibes for speedy recovery.

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  8. Hank ~ I have SO much admiration for you. As a person with Rombergs I know how tough it can be sometimes. You may not know it but there is a large group of people with Rombergs all over the world. I have become friends with so many of them & we are all here to support each other and YOU. Love you kid.

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  9. He's also got a world of readers praying for him. Thanks to his wonderful Mom! I know the helpless feeling you have now is so hard to endure... for now I give you my mantra; 'THIS TOO SHALL PASS' with my oldest son having a disorder that I had no control of has taught me that sometimes the rougher roads leads to much bigger things, you'll see he's going to be a wonderful man along with his brohter and sister. Those 4 simple words helped me through many sleepless nights and many long days. Mucho Love from the Central Coast.

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  10. You don't know me or might not remember me but I was a neighbor of your sister Barbara in Tracy on Machado Ct. I cried as if I was watching over Hank and my heart goes out to you and your beautiful family. Hank is adorable and oh so good looking. My prayers are with you and I hope that one day this horrible disease just vanishes. I pray for your added strength and stamina. God bless you all.

    Naomi

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    1. Hi Naomi! I very much remember you as Barbara's neighbor and friend! Thank you so much for reading Hank's story. We appreciate your prayers! So nice to hear from you!

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  11. A great surgery article according to me on one of the best topic. I appreciate with the content written in the article

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  13. All the best! And waiting for more updates…

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