Happy 13th Birthday Hank!

Hank is officially a teenager! He has been eagerly awaiting turning 13 and at long last has achieved this milestone! Sadly, we weren’t home to celebrate and Hank was still miserable recovering from surgery, but at least we were at our home away from home, The Ronald McDonald House in Madison!

Jeff and I got up early to decorate the kitchen and dining room with streamers and balloons and to hang up the “Happy 13^th Birthday Hank!” sign that Lucy made. We hung more Happy Birthday signs in other parts of the house and waited for Hank to come downstairs. Since we have not acclimated to the time change…we have been keeping late hours…and getting Hank up and out of bed is not an easy task… Well, and I guess the whole, “recovering from surgery” thing plays into that as well…

Anyway, with a 10:30am follow-up appointment with LuAnn, the Physician's Assistant that works with Dr. Siebert, we didn’t have time to waste! Hank came down to the kitchen with Jeff, while Lucy, Charlie and I waited for them. Hank rounded the corner and saw all the decorations…and what was that? Did I see that? The faint start of a half-smile! Hank looked around the room, “Nice.” He said. We prepared a quick breakfast and sat down to eat. Jeff pulled out a gift and some cards to get the day started and Hank happily opened his first gift of the day. He gave us a smile and a thank you…and hugs all around. I had high hopes that today would pull him out of his funk…but I could see he was still glum as we prepared to go to his appointment… Getting stitches out has never been on Hank’s list of fun things to do…

We made it to the appointment with not a minute to spare. They brought us back to the room, where we waited for LuAnn…with all 5 of us crowded in there, we make quite an impact. The door swung open and Dr. Siebert walked in! What a happy surprise! He was all grins with a big “Happy Birthday!” and admired his handiwork. He carefully removed the stitches over Hank’s eye. The incision was perfect…thin and barely noticeable. Hank had a scar there before and when I mentioned it, Dr. Siebert responded with, “Oh, I cut that out and got rid of it.” I am so glad he did that! It makes a world of improvement already!

Getting those stitches out made a difference to Hank. He felt better already! He still needed to get the plastic wrap off his cheek, and the stitches in front of his ear removed, as well as the stitches running down his face between his eye and nose…but the fact that the stitches coming out did not hurt…was very important to Hank. Dr. Siebert told Hank that he would take the rest of the stitches and plastic off on Thursday. He talked to Hank about how he would look as he recovers, and Hank listened with great interest. With an appointment set to get the plastic off and the rest of the stitches removed, and with the obligatory photo taken of the two of them, we headed out to start Hank’s birthday celebration.

A few days ago, Hank confided in his dad that he didn’t want to go out because, “I don’t like the way I look,” and “I am not comfortable.” So, I didn’t have high hopes that he would want to do anything for his birthday. But as we walked out into the parking lot, Lucy and Charlie asked Hank if he would like to go to the zoo…”Sure!” he said, with a spring in his step. I was so surprised! And so relieved. Dr. Siebert has a way with Hank and I guess Hank just needed some sutures out and the reassurance that he would not look like this forever.

We spent the afternoon at the zoo, laughing at the prairie dogs, gazing at the big cats and  since the camels looked like they were talking to each other, we made up their conversations, putting the words in their mouths and cracking ourselves up. It was great! Hot and muggy and happy. Even with the plastic still on his face, Hank faced the day…and the stares... with courage and grace and was just Hank…newly 13 and having a good time! He even agreed to ride the carousel with Lucy and Charlie....the three of them lined up on their animals...and Hank's long legs hanging down...priceless!

Throughout the day, I would check in on Facebook to see the flood of well wishes coming in. I would read them periodically to Hank and he would say, “Wow!” or “Thanks!” each time. Hank suggested we go have lunch, which was surprising, since not only has he wanted to stay home since surgery, he hasn’t been able to eat…so this was a new thing! He struggled to fit the food in his mouth,(and ordering a burger with hot sauce probably wasn't the best idea...) but  he was able to eat a little bit of food, smile, joke around and just have some fun. Could it be that our Hank was back?

The big gift for Hank was a phone. He has been using Jeff’s flip phone for the last year and it is old and a pain to text with. He never complains but has mentioned his desire for an IPhone. However, we have told him a million times that we would not be getting him an iPhone…I would say that having surgery and feeling so down has actually worked in his favor….I doubt we would have given him an iphone this year…..but his mood, coupled with the fact that he is such a good kid...definitely worked in his favor! We couldn't wait to give it to him... and after running a couple of birthday errands...I had to get him a cake...We headed back to the Ronald McDonald House and had Hank come into the dining area. We set ourselves up at a table, while the community volunteers cooked away in the kitchen.  As we started to sing "Happy Birthday" to Hank, the volunteers joined in...and instead of 4 voices, there were 15! (Nice!) Hank opened some gift cards and then opened the last present...the iPhone. Speechless, he stared at it...and then with a sparkle in his eye and a big grin (as big a grin as a kid with stitches in his lip can do), he jumped up and hugged us. "Thank you! Thank you!!" he said with glee and gratitude! He immediately started texting his friends....and that is the last we ever saw of Hank. Just kidding...but it kind of feels like that when your kid has a phone... Later, Kristina and Brandon came by with a card and iTunes gift card for Hank...knowing he was getting an iPhone, they had to time it just right.

We had a late dinner and then got all the kids together for cake. And even though our group was small...it turned out just right...with ice cream and cake, laughter and fun. We plied the kids with sweets...at 9:30pm...and then had to send them down to the basement play area to burn some of it off! Hank seemed happy and more like himself than he had been for weeks...making me think that perhaps the worst was behind us...

The next day, we were up and ready to go. Hank got to share a little "Face Time" with his friend, Jack, from back home. I heard Jack say, "Wow Hank! You look so much better than you did the other day!" (that made Hank smile)...a local pizza place donated pizzas to the house and we had a very filling lunch...and then decided to get the kids out of the house and see a little bit of Wisconsin! We headed for the "Dells", an hour drive to the foothills, full of water parks...kind of like your average water park meets Las Vegas. Showy, glitzy, touristy...and full of water slides as far as the eye can see. Would have been great, had we not had a kid who just had surgery on his face and the last thing he can do is hurl himself down a waterslide!

So we found something we all could do...an amphibious "duck" tour of the Wisconsin River. You know those boats with wheels that then can just drive into the water and be a boat? Yeah...that's what we did. Not the most exciting tour, but something we have never done...and we got to see some beautiful scenery. That, coupled with a stop at the Dairy Queen for some milkshakes...rounded out our day. Later that night, I came into the kitchen to find Lucy and her Dad, having milk and cookies for a little father-daughter bonding time. Just what that little girl needed...considering she did NOT want to go on that boat tour and did it under duress. (that is what I get for letting her watch the Titanic!)

 Thursday arrived with much fanfare...one week after surgery and the dreaded plastic wrap on the face and the last of the sutures were scheduled to come out. We made our way over to the University of Wisconsin Hospital, along with Kristina and mom Karen, who wanted Dr. Siebert to have one last look at Kristina's face, before we all departed for Chicago on Friday. We quickly navigated the state-of-the-art  registration process and check-in and sat down to wait for our favorite doctor. We were called back quickly and headed for the exam room. It seemed strange that there were only three of us, but with the World Cup playing, the younger kids stayed back at the house with Kristina's dad, Gene. The first nurse took a look at Hank and asked, "Is that plastic wrap on your face?" We all nodded yes. She stood up and got closer to Hank's face and tried to tug at it. "Hmm...I have never seen this before...I better ask someone else," she said and left the room. She returned with another nurse who confirmed that, "Yes it is plastic, we will let Dr. Siebert take that off," she smiled happily. And with that...both nurses left, leaving us to wait for Dr. Siebert.

 

We didn't have long to wait. He swept in gave hugs and got down to business. "You look great Hank!" Dr. Siebert exclaimed, "How are you feeling? Ready to get that plastic off and those stitches out?" he asked. ""Yes!" Hank answered, "Finally!" And so it began...the slow process of removing the plastic off the side of Hank's face. After what seemed like forever, but was really just a couple of minutes, the plastic was off. "Better?" Dr. Siebert asked. "Better!" replied Hank as he reached up and touched his cheek. Dr. Siebert made quick work of the stitches in front of Hank's ear. The sutures along his nose were a little trickier and as Hank winced, Dr. Siebert quipped, "Good thing you have a surgeon with steady hands doing this!" Hank made a sound between a chuckle and a good natured groan and with that, "All done!" was heard. Hank sat up and let us take a look at him. Wow! He looked so good! With the exception of the swelling, for the first time in a long time...Hank looks like Hank!

We all took seats and talked about Hank's recovery, what to expect, limitations, prognosis...everything. And for the first time, Hank was a part of the conversation. Hank asked some questions..."When can I swim? When will the swelling go down?" That sort of thing. My big question was of course..."Do you think this is it?" Dr. Siebert answered in the way I knew he would...positive but cautious..."I think so...this should last him as he grows." I inquired about bone surgery...and he responded by pointing out that Hank's eyes are even and his jaw and mandible are near perfect...so the only real issue is the cheekbone...which is why the tissue was moved to that area. So maybe the tissue will mask the missing cheekbone and Hank can just live life. I know that a cheek implant of some sort is a real possibility, but at this point we just need to focus on the present and as always, but Hank in God's hands and trust that all will be OK. As we finished talking about medical stuff, the conversation switched to the Cubs game we were going to the next day. "Oh, we better check the weather!" he said, as he pulled out his phone. I watched as both Hank and he looked at their phones, searching for weather...(I don't know if Hank was really looking at the weather or playing a game, but the image of the two of them...sitting there like two old friends just cracked me up!...and in reality...they ARE two old friends...)

We took some pictures, chatted some more and then made our way out to the waiting room, where Kristina and Karen were waiting for us. Dr. Siebert took a seat across from Kristina and Hank plopped down next to him while Jeff and I grabbed seats across from Hank. He examined Kristina's face and they chatted about the swelling and when she could resume activities...conversation similar to ours. And then we all sat back and chatted about many things...it felt like we were just sitting in our living room with great friends, instead of the waiting room of a hospital 2,500 miles from home!

I realize just how amazing it is that not only are we so far from home...and in the presence of greatness (because Dr. Siebert IS great)...but that our two families were able to go on this journey together!

It was a bittersweet goodbye on our part. We don't ever want Hank to have another surgery...which means we would not be going to Wisconsin again...and we would not be seeing Dr. Siebert again... But I think we WILL be seeing Dr. Siebert again...he is our only doctor navigating us through these treacherous waters. So although we won't (fingers crossed) have to come for surgery, I would think we will come back for a check-up...and take the kids back to the Dells, when Hank can actually enjoy a waterslide or two!!

We left the appointment and headed back to the Ronald McDonald House for our last night there...our last night in Madison. It had already been one week since surgery! It's amazing how time can drag on so slow...during surgery and the first days of recovery...and then speed up with each day that Hank feels better!  The Diaz family went off to make their own fun on their last night and we headed out to get Hank a case for his new phone. A trip to Target and Radio Shack completed the task and then we headed downtown for a last look at the beautiful University of Wisconsin and a tour of the state Capitol building. Fun fact: the exterior of the Madison Capitol Building is a replica of the Capitol building in Washington DC. (No wonder, it looked familiar!)

We had our last dinner in Madison, at the Ronald McDonald House. Hank had a chance to go into the "game closet"...a room filled with donated toys and games, for the kids who stay at the house. And then all three kids settled down for a quiet evening in the room, laying on their beds and playing on their tablets, while I packed the family up for our early morning departure to Chicago. Of course when the Diaz kids came back, Lucy ran out to join them for some board game play...Kristina and Lucy have hit it off and a strong friendship has formed!

As I finally laid down to get some sleep, I reflected on all that we had been through in just over a

week's time. Jeff's Birthday, tornadoes, surgery, Hank's difficult recovery and depression...Hank becoming a teenager...forging new friendships and seeing old friends...excited to head to a Cub's game, but wondering if a few more days of rest would be better...and appreciating the good people who work at The Ronald McDonald House and the amazing community of Madison who support it. That although I hate that Hank has Parry Romberg Syndrome and all that he has to endure...it is not lost on me, that everything happens for a reason...and if we weren't in this position, we would never have met the amazing people who have entered our life BECAUSE of Parry Romberg Syndrome.

Hoping that tomorrow's Cubs game at Wrigley Field will bring new and happy experiences for Hank, so that when he remembers this trip, the fun is what he remembers and the pain is a distant memory!

Let's go Cubs!!

Birthday cards and gifts from afar!

Donated Pizza and Ronald is watching!!

First Gift of the Day!

Late Night Birthday Cake Sugar High!
 

Madison Selfie!





The "Wisconsin Ducks" Tour of the Wisconsin River
 





Our "official" photo!



Hank was blessed with more cards and birthday gifts!
 

 

 

 

 

One Week and Counting...

I can't believe we have been on this journey for five and a half years... Just when I think we have it handled...things change. We are one week away from heading to Madison, Wisconsin, where Hank will have his 5th surgery. My heart breaks for this kid...having to face another operation, another hospital stay...another recovery...and just all the fear and worry that goes with it. Hank is stoic...he doesn't mention it...and neither do I. But we know it is there...looming ahead...and neither one of us is happy about it.



First day of school...Last day of school...grow much?

We waited 6 weeks to hear back from UCSF, for the referrals to the other doctors they wanted Hank to see. By the time they finally called us, we were planning the trip to Madison. After waiting so long, all they did was refer us to 2 different departments...cranial and plastics. Well I could have done that myself! "Is there a particular doctor we should see?" I asked. "No..." said the receptionist, "just call the numbers I gave you and they will set you up with some appointments." Hmm...so our child has a disease that affects less than 2,000 people worldwide, and you want us to see just anyone? That didn't even make sense to me...

Luckily, I had received a call from Hank's surgeon, Dr. Siebert, the week before. "Hank doesn't need that bone surgery," was the first thing I heard, "He is too young, and even then, I don't know if he will ever need it." I could feel the weight of the world start to lift off my shoulders. "But what about the other people who have needed bone surgery?" I asked, "Isn't Hank going to need it too? I know his cheek bone has deteriorated." Dr. Siebert explained, "Hank was better off than most, when he came to me, we caught it earlier...Yes, his bone has deteriorated, we know that...fixing the tissue is to mask it...but I don't know if he will ever need bone surgery...and certainly not now." I couldn't believe my ears! Just what I wanted to hear..."Bring him to Wisconsin," he said, "We need to lift the flap and remove some tissue, it's weighing down his eyelid." I took a deep breath, "Hank does not want another surgery and Jeff and I don't want to put him through anything unless it is absolutely necessary."

There was a pause...and then I heard the words that squeezed my heart..."Hank is going to be 13. These are the years that matter. The years that form who we are. Hank deserves to feel confident...to look his best. Hank deserves that chance. We owe it to him...I owe it to him... I owe it to this kid to give him the best chance I can. We need to do this for Hank." My heart sank. I knew he was right... He then went on to talk about Hank's eye and all the things that could go wrong if we don't do the surgery and the tissue continues to pull his eyelid down...won't be able to close his eye, resulting in eye ulcers, dryness, and many other issues. And so that was that. Surgery on June 19th...now how were we going to tell Hank?

The next week was crazy busy, with me working long hours and putting on three events that week. I only saw Hank for an hour before school and knew that I couldn't tell him then. And so we waited all week to tell him. It was painful...and worrisome...how would he react? We finally found our chance that weekend...I had to work on Saturday, so Sunday after Mass would have to be the time. As Jeff and I made our way up the stairs to Hank's room, my heart was heavy. I rehearsed in my head what I would say. Hank was sitting on his bed, playing a game on his laptop. He looked up when we came in and I saw the questions on his face. Must be serious...both mom and dad in his room...and wanting to talk!

Jeff sat down next to Hank and I sat on Charlie's bed across the room. We started off by telling him that he would not be having bone surgery. "Oh thank God!" he exclaimed as he looked up at the ceiling in relief. "but..."said Jeff, "you do need the tissue surgery in Wisconsin." Hank's face fell..."NO! NO NO NO!" He said in a voice laced with anger and disappointment. "We are so sorry," I said, "but we have to do this...you need it.", and went on to explain why. Hank sat silently and listened...and then the tears started to roll down his cheeks. He tried to wipe them away before we saw them, but they were too quick and there were too many. "No..." he said quietly. I felt terrible. This was awful. It was so much easier when he was little. He didn't quite understand and he didn't seem to remember the surgeries. But now...now he gets it...and he remembers...and I don't blame him...I wouldn't want it either.

I watched his face and could see the range of emotions...anger, disappointment, sorrow...and then resignation... "OK. Fine. I'll do it," as he wiped the tears away and sat up. And that was that. I knew he was angry and hurt...but he did not want to talk about it... he wanted to be alone. We left the room and went downstairs...and then it was my turn to cry...

I sent Dr. Siebert a text..."We just told Hank about his surgery. He is very upset. Would you be willing to talk to him about it?" The response came back right away..."Absolutely!" He called that night. "Hi Terri, It's Dr. Siebert. Is Hank available?" (I love this man) I handed Hank the phone, "Oh Hi Dr. Siebert!" Hank exclaimed when he heard the voice on the other line. They talked for a few minutes, and I heard Hank say, "OK. See you in a few weeks." Whew...he sounded OK. Hank handed the phone back to me..."I told Hank not to be mad at mom and dad," Dr. Siebert said happily, "I told him to be mad at me...it's not mom and dad's fault, but you need to have this done. He'll be fine now." Once again Dr. Siebert leaves me speechless..."See you in a few weeks!" he said, and we hung up.



Last day of 7th grade

It's been two weeks now...Hank seems OK. Summer has started, with the last day of school just a few days ago. Hank received two awards and sailed through the year with good grades. He is happy to have this week at home to just relax. Unfortunately, we will be celebrating his 13th birthday at the Ronald McDonald House, and therefore he has told me, that I we will be having his party this weekend. (What's one more thing to do before we leave?) I am trying to get him to have a slumber party...outside in our tent, but he is indignant..."You want us to sleep outside?" He clearly doesn't get the whole "camping vibe" that we are trying to create...

Today is the day of our fundraiser. "Pizza With a Purpose". It's our first one since moving back to our hometown. Wish I had time to really plan one and advertise. We put this together in a day...but with our kids' amazing school, and the radio station running a PSA about it, it should go well!

Little miracles have been happening this whole last week. A letter came from the State Controller's Office that said a local bank had lost funds of mine. I went to the bank and found that it was just enough to cover the plane fare to get us to Chicago and back...the radio station recording a PSA for Hank's fundraiser...unsolicited all about 12 year old Hank Gibbs and his fight against Parry Romberg Syndrome!...and last night...last night put me over the edge of stunned gratitude...

Hank is not the only one having surgery next week...13 year old Kristina, from Atlanta will also undergo surgery for her PRS. Mom Karen and I have become close friends over the years...and saw an opportunity to meet in real life and for the kids to have someone to go through the surgeries with. I had put out note on Facebook, asking if anyone had an "in" with the Chicago Cubs...we will be flying out of Chicago and would love to take the kids to a game...but tickets are pricey and our money needs to go towards the necessities...



Our surprise visit with the McQuillen Family in NYC 2009

Last night I got a message from another PRS mom, Flora McQuillen, "How many tickets do you need?" she asked...I responded with a cringe..."nine. 5 for our family and 4 for Kristina's family". (nine is a lot to hope for...) I told her if we had one family covered, we could split the cost of the other tickets... The next thing I know...she sends me an email with a confirmation attached...she and her family have purchased our tickets...all of them...NINE! I couldn't believe it...Here is another family who have walked this walk that we are on. We met them in New York after Hank's first surgery. Their son Pat, was 13 at the time and had already had his first surgery. I will never forget how excited we all were, to meet in person! Pat was the first person with PRS that Hank had ever met and I was so grateful to get the chance to meet them. It was a short visit...just coffee before they caught the train home...but it is a memory that I will treasure forever. I can't thank Flora enough for her generosity. I was in tears as I let Jeff know...and still in tears when I told Karen. And then she was in tears too...
I have no idea what today will bring...The fundraiser starts at 11:00 and goes all day. I will be running back and forth from work, so that we can be there at lunch and again at dinner. I have high hopes that Hank will have some friends there...we will raise some money for Hank...and raise awareness for this disease does not define who we are...but has definitely changed our priorities and opened us up to things we never imagined...good and bad. Today is all about Hank...strong and stoic Hank...facing surgery #5 with grace and courage...


* Note: I started this blog years ago, to keep our family and friends informed on Hank's illness and progress. This is a disease full of unknowns...unknown cause, unknown progression and it affects each person differently. Although we wish Hank did not have to have surgeries, the alternative is much worse and we are extremely grateful we have Dr. John Siebert in our corner. I can't imagine what Hank's life would be like if we never had the micro-vascular free flap tissue transfer. These surgeries give Hank the normal life we have prayed for and we would not change a thing!

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!