Monday, October 8, 2012

The Journey to Green Bay and the Miracles Along the Way

Day three post-op and we were ready for a break!  We took Saturday and made it a day of rest. It was cold and cloudy out...the perfect day to stay indoors.  Hank was still feeling shy about his swollen face and not able to open his left eye, and really just wanted to stay put. Lucy and I had caught colds, so we needed a day of rest as well. Hank and brother Charlie played video games while Lucy colored. We watched movies, read books, caught up on laundry and relaxed.

On Sunday, we got up early (early for us, that is...) and went on a road trip. We couldn't let this trip just be about surgery! We find that it's easier, if we do fun things too...then Hank tends to remember the fun stuff and not the surgery itself. So we headed up to Green Bay. It was an unfortunate start of the day, as I got hit with the stomach flu that morning...but we had a plan for the day and nothing was going to stop us from going!

About a year ago, when Dr. Siebert said Hank needed another surgery and we knew it was going to be in Wisconsin instead of New York, my sister Patty sent me an email with a link. In it she wrote: "This is why you will go to Wisconsin." The link was to a site for "Our Lady of Good Help" . It's a place where the Virgin Mary  appeared some hundred years ago and is now a's the site of healing and miracles...and since we want Hank cured...well...we want a miracle...we just had to go! It was almost a three hour drive through pastoral Wisconsin. Very serene with dairy farms, orchards, with the leaves changing colors and more. Following the signs to the town of New Franken...and down a long country road dotted with dairy farms, we found the shrine. Made up of just a few brick buildings, it didn't look like much...a church, a gift shop, a small cemetery... We got out of the car and walked around...not sure where to go first...I saw a sign that said, "crypt"... That sounded a little ominous...and then an arrow that read, "shrine."
We headed down the stairs into a dark room, and there in front of us was a lovely scene. A beautiful statue of Mary, Our Lady of Good Help, brightly lit and surrounded by bouquets of flowers, flanked by statues of kneeling angels, stood in the middle of the room. The only other light came from the numerous candles around the room. I was immediately awestruck and in tears as I knelt in the silence of the room, asking for the miracle we so desperately want. Hank went up and knelt in front of the statue, soon joined by Charlie and Lucy...all three with hands clasped and heads bowed in prayer. For me it was that last-hope kind of feeling...the one where you just want to prostrate yourself on the floor and beg...BEG for your child to be healed!

Hank was quiet and serene...just taking it all in. We made our way to the gift shop, to grab a few remembrances. As I paid for our purchase, I was talking with the nice ladies who run the gift shop, telling them that we came all the way from California. They inquired about Hank's surgery and I filled them in. One lady disappeared into the back room and came back carrying two items. "These are relics," she told me, "one from St. Theresa the Little Flower and one from St. Maria Goretti." Now this might not be amazing to anyone else...but to me, it was astonishing for two is that St. Theresa is my patron saint...and to come by a relic of hers is quite unusual...but two...our church was started a few years ago and just this August, we completed and moved in to our new church...called...St. Maria Goretti's! So for me...this seemed so significant! The woman explained that the relics had belonged to a woman who passed away and her family left the relics with the shrine. I had Hank hold the relics and he blessed himself with them. (extra prayers!)

As we left the shrine, we saw a dog sitting in the parking lot. "Here boy!" Hank called as soon as he saw it. The dog turned and saw Hank...stood up...wagged it's tail and made a beeline for Hank. We have a border collie at home named Maverick...and the kids are really missing him. As the dog came closer, I realized that this too was a border collie! The dog came right up to Hank, rolled over onto his back and waited for Hank to rub his belly! All three kids converged on the dog, petting him and scratching his belly. When he had enough, the dog rolled over and only had eyes for Hank. All he wanted to do was reach Hank's face and smother him with dog kisses. Hank's face lit up with such sheer amazing sight!

We finally gathered up the kids and headed for our next stop...Green Bay...home of the Green Bay Packers! You can't go to Wisconsin and NOT go to Lambeau Field! It's the Holy Grail of Football! I expected a big city like San Francisco or something...but it's skyscrapers...and the stadium is truly in a neighborhood! The parking lot looked deserted...the Pack had an away game that day...but we went ahead and climbed the steps to the stadium anyway.  From a religious shrine to a sports shrine...that's how we felt. So excited to be there! Lucy and I fell behind as we hit the ladies room...Jeff and the boys were at the info desk, talking to the woman at the counter. The next thing I knew we were following her from the atrium to the actual stadium! Apparently, she told Jeff it was closed...but then taking a look at Hank's sad sutured face and hearing we were from California...she called security and got clearance to take us out. (A football miracle? I think so!) It was AWESOME! Jeff looked the happiest of all as he said, "Take a picture of me!" with arms outstretched and Lambeau Field in the background.

We thanked our tour guide profusely, sad that we missed the real tour where they take you through the tunnel...but so excited that we actually made it there and got to see the stadium. As we drove the three hours back to Madison...I took a turn for the worse. I had made it through the day and now the stomach flu was taking over. But I was so grateful for the day of mini miracles...smiles on everyone's faces...Hank getting some solitude in prayer and the excitement that only a great sports' institution can bring! We still had to face getting stitches out the next day ...and Hank was still swollen and not feeling very well...but for one day, it was nice to get out and enjoy the Wisconsin countryside!

The next morning, Hank exclaimed, "Mom! I can open my eye!" Finally! After five days...he could open his eye. What a relief! "I prayed that I would be able to open my eye and see," he told me, "at breakfast I thanked Our Lady for answering my prayer." I can't help but think all our prayers were answered...there are no coincidences...and all the little things that happened at the shrine tell me that our prayers were being heard. Maybe they aren't answered right away...but they are answered!

Since I am talking about shrines and statues..etc. I do want to add something...We do not worship statues and we do not pray to anyone other than God. A statue is just like a photo of someone...a remembrance ...and if I ask you to pray for Hank...why wouldn't I ask those who are already in heaven to do the same? Jesus loved his mother and would do anything for when I ask Mary to cure Hank...I am asking her to intercede on our behalf, to her Son...that is all. Our journey over the last few years with Hank and his PRS has had the highest of highs and lowest of lows...but through it all we know that God has shown us the path...

Saturday, October 6, 2012

2 Days Post-Op

Everyone has a blanket and we are cozied up together on the big sectional in the family room, watching Looney Tunes. Such a fun and "normal" thing to do...the perfect scene you would expect for a Friday Family Night at home! But wait...we aren't at home...we are still in Madison, Wisconsin...thank goodness we are here, at the Ronald McDonald House! Really gives us a chance for some kind of normalcy when things aren't normal at all! Tonight, I saw the first hint of a smile on Hank's face, as he sat next to his Dad, watching Bugs Bunny. Of course he can't give a full smile since half of his face can't move yet...and he is still terribly swollen and unhappy...but right now...he is just being a kid and hopefully getting a little respite from the trauma of the last few days.

This morning, we took the short commute to the "Transformations" clinic in nearby Middleton. We met with Dr. Siebert's P.A. (physician's assistant) Luann, for the removal of the hated sutures on Hank's eye. We have all been dying for him to get them removed...they make it so hard to put drops in the eye...and with the swelling, they were pressing into Hank's upper eyelid. Not comfortable at all!  Luann is so nice...and with three kids of her own...I think she had some insight into how Hank's been feeling. Since there was tape on Hank's forehead, she applied a solution to loosen it...while we were waiting I asked for a favor.. "I was just wondering if you could help Lucy while we are here?" I asked.  "What do you need?" she replied. "Well...Lucy had her ears pierced 6 weeks ago...and she would really like to wear different earrings now...but she won't let me remove them. Since you are a professional..."  Luann smiled and asked Hank and Lucy to switch spots. Very carefully Luann removed the earrings and replaced them with the new ones. Quick and easy! Which is great because when I tried to do it last week, there was a lot of screaming and crying! 

Hank's turn was next and Luann made quick work of the removal of the tape and then the sutures. She was done before Hank had time to complain...and when she told him she was done, I saw the hint of a smile appear! I'll admit that it was a smile of relief and not happiness...but we will take what we can get! With our next appointment set for Monday, and Luann's lunch suggestion of  "Quaker Steak & Lube", we headed out. Hank did not want to go anywhere. "Let's go back to the Ronald McDonald House," he said. "Aw...c'mon Hank...let's go get some lunch!" said his Dad. "No...I just want to go back!" Hank was upset by the mere prospect of being out in public. But after telling him how they are used to seeing people who have had facial surgery in that area and he could wear his hood...he finally relented.

Hank kept his head ducked and his hood on as we entered the restaurant. He burrowed his head into my side and I threw my arm around his shoulders and tucked him in close to block him from the other patrons. When we got to the table, I notice he chose the seat against the wall, so that anyone walking would by would just see his "good" side. Clearly, he thought this out. I could tell he was uncomfortable at first...not wanting to look at the waiter. But as we ate lunch, Jeff told the kids stories of his daredevil youth and had them all cracking up. I could see Hank's guard was down and he forgot where he was for a few moments and giggled and guffawed with the rest of us. As it turns out, it was short-lived...the moment we stood to leave, the hood was up and he retreated back into his cave. He didn't want to play pinball or any of the video games...he just wanted to GO! (for him to pass up a video game...unheard of)  I see that this will take some time.

Back at the Ronald McDonald House, we cleaned Hank's eye up and he headed down to check out some video games with Charlie. Jeff affixed an ice pack to his cheek, so he could play and ice at the same time...and he seemed at ease...comfortable in this cocoon of healing that the RMH provides!
I left to do a little's COLD here and guess who is wearing flip flops and forgot her jacket? Yep...I made sure everyone else was packed up and then forgot some essentials for myself. I mean, really....who forgets a coat when they are going to Wisconsin in the fall? Uh...that would be me!

I fired up the rental minivan and headed over to Costco in nearby Middleton. (yep...driving a minivan and can't believe I love it!)  So I finally ended up at Target...which has it's own parking garage and escalators to get to the front of the store. I love I was in heaven! While I was shopping, Jeff and Lucy were watching the baseball game and the boys continued with video games. At dinnertime, they made their way to the dining area and Hank actually sat at the table and ate dinner. Maybe realizing everyone is here because of a medical issue? I don't know...just glad he was a little more comfortable.

Armed with winter hats and gloves for our group, and a jacket for each kid and myself...apparently everyone grew since last winter...I made my way back and ate dinner while everyone else played. Eventually, the kids picked movies, which brings to where I started this whole thing...chilling in the family room of the Ronald McDonald House! I am  putting this to bed and will add the photos in the exhausted as I am coming down with a cold. Sore throat, runny nose...figures!

It's Saturday's already noon... and our little band of warriors is falling one by one. Lucy had a hard night ...woke up at 2 am with a sore throat. Jeff medicated her and she ended up sleeping in the bed with me (put the two sickies together?) and Jeff took the roll-away bed...which can't be that comfortable. Hank did a lot of talking in his sleep. At 4 am, Charlie was up, changing his clothes...uh oh...his bed was no longer suitable to sleep in and I told him to get in my bed and I would sleep on the floor. "No mom! I will sleep on the floor! I don't mind!" Charlie whispered. I spread his blanket on the floor as he grabbed his pillow. I put another blanket over him and laid down next to him as we curled up against each other. He is just so sweet! After he fell asleep, I went back to bed, only to find that Lucy had cocooned herself in the blankets and decided to sleep lengthwise across the bed! I skooched in next to her...on the very edge of the bed...oh sure...I could have rearranged her and disentangled the bed clothes...but really....I would rather balance on the edge of the bed with no blankets than risk waking her! (that is how desperate for sleep I was!)

We were woken by what sounded like a car chase outside our window. Sirens of different vehicles...sounded like about 20 of them! No idea what was going on...just knew it woke us up! So here we are....I'm still in my pajamas, laying in bed. Lucy has gone back to sleep...Jeff and Charlie are doing laundry, Hank has enjoyed his first shower since surgery...and now both boys are heading down to the family room to sit and play video games. I think this family needs to recharge it's batteries today...the trauma of everything has caught up with us. Tomorrow, we will bundle up against the cold...but for today, we will circle the wagons around Hank and stay put! Hope we get to see that elusive smile from Hank today...

Before stitches removal...
With Luann after stitches removal!

The elusive smile...!

Thursday, October 4, 2012

First Day After Surgery...

It's the end of the first day after Hank's surgery...and my mind is a jumble of thoughts.  So many emotions today..and a  profound loss of sleep for both Hank and I. Last night was tough...I couldn't sleep...I didn't  want to...I just wanted to watch over Hank. But eventually, I laid down and slept here and there throughout the night. Of course everyone knows you don't get any sleep in the hospital...and since Hank's IV was pumping him full of liquid half the night, he was up every hour for a trip to the bathroom. God love his nurse, Karen, who turned down the flow on the IV and he was able to get a couple of hours of sleep!

Hank watched movie, after movie, throughout the night...falling asleep about a quarter of the way through and then waking up at the end, asking for another movie. He had to practically sit up and keep an ice pack on his face...not the most conducive situation for sleep...Every few hours, nurse Karen came in to check vitals and to put in the eye drops. We had kept ice on Hank's face for most of the night, to keep the swelling down, but even so, his eye was so had swollen shut. The sutures, go from his lower eyelid, up over his upper eyelid and are taped to his forehead. The are pulled tight, so that the lower eyelid will stay in place...but with the eye swelling, it presses on the sutures and really hurts! Add into this fact that now we had to try to pry the eye open and put drops in. Nurse Karen reclined the bed a bit and told Hank she was going to put eye drops in. She tried to pull the eyelid budging...Hank cried out in agony...His pain level shot up and she quickly backed off. After that, he had some pain medicine and slept until the 7:00 am wake up call from the attending and plastic surgery residents.

They turned on the light and charged in. I had just fallen asleep when they I am sure I was quite a lovely sight... The attending explained what Hank's surgery consisted of and then announced she would put in the drops. I was worried because I knew that she would not be gentle. I was right. She pried that eye open and got those drops in and Hank's body went rigid with the shock of the pain. Another doctor rushed up and told Hank to squeeze his hand...which I know he did! Hank was hurting after that...but just turned his head on his pillow and told us he wanted to go back to sleep.

I told the Doctor, "I can't do that! I can't get those drops in there like that." She told me not to worry because the sutures would be coming out tomorrow and then it would be easier to get the drops in. As the flock of interns made their way out the door, I turned to the nurses, "Omigosh! He's not a CAT!!" It reminded me of giving meds to a cat! You know...grab it by the back of the neck, wrestle it to the ground, wrench open the jaws and jam the medicine down it's throat...

Hank slept for a couple of hours after did I...until the pharmacist came in and woke me up...It dawned on me that it's not Club Med and I should probably get the heck out of bed and be ready for this kind of thing! Hank woke up still looking swollen and miserable. Totally normal, I know...but still startling. The daytime nurse, Emily, came in and talked about the fact that they would be discharging Hank that day. Although I knew scared the heck out of me. I can't get those drops in his eyes...what am I going to do? But I knew that for Hank's mental health, it was the best thing possible!  I got most of the paperwork, after care, etc, before Jeff and the younger kids arrived.  By then, we were almost ready to go. Hank had a milkshake, we got all the prescriptions filled, called for the shuttle and were given a wheelchair to use. Right before noon, we got Hank dressed, gathered our stuff, said goodbye to the wonderful staff members and wheeled Hank through the hospital. We waited in the lobby for the shuttle to take us back to the Ronald McDonald House. "Can we keep this wheelchair?" Hank asked. "What?" I said, "Why would you want a wheelchair?" "So when my legs get tired, I can just sit down," he explained. Oh well...of course...that makes sense!

Back at the Ronald McDonald House, Jeff took the kids down to the movie room and had them watching movies while I got in a quick nap. We continued to ice Hank's face throughout the day and Jeff was able to get the eye drops in. (thank you Jeff!) Hank was hungry, so Jeff brought in burgers from McDonald's. (Because is you are staying at the Ronald McDonald House, you should have McDonald's at least once!)

Everything has gone smoothly this evening...almost. Hank did not like the other people staring at him, and ended up cutting his dinnertime short and escaping back to the movie room...without really eating! Hank has been quiet all night...maybe even pensive. I'm not sure if it's pain or if he's depressed. (I would think it's a bit of both!)

I know this surgery has affected all of us. Charlie has given Hank his most treasured stuffed animal to sleep with, in the hospital and here at the RMH. Jeff said that Lucy laid in her bed last night crying over Hank, finally moving to the bigger bed with Jeff, where she slept with Hank's robe clutched in her arms... Jeff looks a bit shell-shocked as he tries to get work done, keep the kids happy and Hank comfortable. We knew that it would be like this...but it has been two years and we are a bit rusty!

Tonight in the room, he walked over and hugged me and collapsed into a pile of tears. "Oh no! What's wrong" I asked. No reply ....just tears. "Did you look in the mirror?" I asked. More tears and some nodding.
Brutal! What do you say to that?  "This is the worst of it!"  I told him. I explained that the swelling is worse in the first few days and he would be looking better...more tears. "You won't go back to school looking like this!" I reminded him...that seemed to make a little bit of a difference, but not much. He was inconsolable...I hate the helpless feeling of not being able to make it all better...right then and now! Poor kid...his tears just break my heart.

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He finally settled down and went to bed...where he is peacefully sleeping...for now. Tomorrow the eye sutures will come out and hopefully that will make a difference. Nurse Emily gave us lots of ideas of things to do with the kids while Hank is recovering....and even printed out the information.  We now have a car rental so we can make it to the 7:30 am doctor's appointment 15 minutes away...too early for the RMH shuttle. (only to have the appt changed to 11:30...thereby not needing a car...which we already have)  So now we can get out a bit and see this beautiful area. Hopefully a change of scenery...even if it's just across town, will do Hank some good.

It's times like these...when Hank is distraught and we are bone weary...I wonder if it is all worth it...but then I look at all Hank has done and how "normal" his life is...what his life would be like if we hadn't done anything...and I know there hasn't been any other choice...

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 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 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 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 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'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 matter what!

Tuesday, October 2, 2012

Night Before Surgery #4...

It's the night before surgery and we are here in Madison, Wisconsin. The flights were uneventful...all three kids were kept busy with games, TV and books...and although I wish I could have slept on the planes, I met a very nice and  interesting woman named Bridget, who gave me insight into starting our own non-profit! Some things are just meant to be...!

Photo from the Ronald McDonald House in Madison, WI. 
We were quite happy upon our arrival in Madison to see the Ronald McDonald House shuttle in front of the airport waiting for us! We weren't sure if they would have room for us there and were so thankful to see that van! It was very easy to see the van...there were no cars or taxi's lined up to take the multitudes into is not New York! What a big change for us!

We feel very fortunate to be at the Ronald McDonald House. Eighteen bedrooms and they are all full...we were lucky to get in!  This place is amazing!  A game room with an X-Box, a Play Station and a Wii...A movie room, a TV room, a toddler toy room, an art room, plus a  huge kitchen and nice sized dining area. You would think with all the people here, that we would be under each other's feet...but so far that hasn't happened. Maybe because there is a big group of Amish people here...they don't watch TV or play video no competition for space there...

We took a tour of the hospital today. The American Family Children's Hospital is beautiful! Brand new and top of the line. The lobby looks like a little town...complete with a movie theater and lighthouse..which is really a play room.  We made our way to the 3rd floor, where Hank will be having surgery. Tina, from Childlife Services met with us and showed us around. We saw the check-in rooms, where Hank will be while waiting for surgery. She showed the kids photos of the operating rooms since obviously we can't go in them...and the waiting area for families. Since it is so geared for children, there is a supervised place that Lucy and Charlie can be, if Jeff and I both want to be there in recovery. (no siblings allowed) We can all be with Hank prior to surgery, which is different from our past experiences...which I think will be good for Hank...keep his mind off things.

We also saw where the recovery room, ICU and regular rooms are. Tina told us all about what happens after surgery. She said, "after you come out of the recovery room, we will bring you down here and check you into your room."  "MY ROOM?" Hank asked, startled and with tears in his eyes, "What room?" Hoo boy...I looked at Tina, "Oh...we failed to tell Hank that he would be staying overnight..." His last two surgeries were outpatient, so this was news to him!  " will love it!" Tina exclaimed, "We bring you video games and movies and you can order food off a menu! You will want to stay!" Hank was hugging me, with his face buried in my side...he looked up, "Video games?"...a smile started to appear, "Movies?" was a grin..."OK...maybe I could stay..."  We went and looked at an empty room...nice and cheery with a couch for mom or dad to spend the night. (hope it's me...I want to get a look at that menu!)

After seeing the kids playroom, we headed out to get some lunch and then to the Ronald McDonald House for some playtime. Charlie and Hank entertained themselves with video games while Lucy played on the play structure outside. There is just so much to do here...way better than home!  Jeff was able to get some work done and so was I. Very nice!

Tomorrow's surgery  is at 1:00 pm central time. We fed Hank again at 11:00 pm, since he isn't allowed to have food after will make for a long day tomorrow...poor kid!  The surgery is supposed to be about two and a half hours. We are not yet sure exactly what will be done during surgery, since we have not seen Dr. Siebert yet! I don't think he really knows until he physically sees someone. We let the kids stay up late, in hopes that they will sleep in and Hank won't have to go that long without food...we'll see if this plan works...
I will write more tomorrow...prayers appreciated!

Monday, October 1, 2012

Heading to Madison!

Well, here it is...the early hours of the morning of October 1, 2012.  In just a few hours, we will be getting the kids up for the drive to the airport. I know I should be in bed...but I am to anxious to even try.  Maybe a 30 minute cat nap...

Fr. Terry blessing Hank.
This is a new adventure for us...and we are all a little excited...and a lot nervous!  Hank will be at the American Children's Hospital in Madison, Wisconsin this time.  His surgery is scheduled for Wednesday, October 3rd...and as the date draws closer, the more emotional I become.  It's funny...I know Hank has Parry Romberg Syndrome...and it's on my mind every single day...not the first thing on my mind anymore...but's there...always.  But for the most part, my focus is on raising awareness, talking to other families with PRS and fundraising for Hank's trust in anticipation for surgery.  And we have been so busy with the golf tournament fundraiser. But now that is done and we had to quickly pack and get ready to the realization is hitting me...Hank's having surgery! I knew that...I really did...but knowing what's ahead just breaks my heart for that kid. And then there's Hank...stoic and strong on the outside...but I know he is nervous on the inside. I see him sitting pensively...and I know he is thinking about it. He doesn't say much...but I know.

Just the other day, Hank asked me about his condition. It was the first conversation we've really had about it.   Hank was just seven when he was diagnosed and we didn't tell him much. Over the years, we talk about it here and there...but now at age eleven and in the 6th grade...he understands so much more!  He was sitting at the kitchen table, doing homework as I cooked dinner. (I use the word "cooked" loosely...)  Turning around to look at me he asked, "Hey Mom.  Do I still have Parry Romberg?" Ugh! Caught me off guard. What do I say? I looked at him, "I don't know. I don't think so...but I don't know for sure," I answered. "So how did I get it?" he asked, "did I catch it?" I ponder the question and think perhaps a classmate asked Hank the same thing. "You didn't catch it," I tell him, "we don't know how you got it...maybe from an injury, maybe the vaccinations triggered it...something triggered it in your body...and no one knows what...yet." He looked sad...It IS sad..." do I get rid of it?" Now there is a question that I would really like answered!! I explained that there is no known cause and no known cure...and the micro surgery that he has had is our best option to stop the progression. Hank sat quietly for a moment..."OK. thanks." and turned around to finish his homework.

I imagine that Hank has a lot of questions...I just wish I had better answers!  But with that said...I think it's good that Hank is asking...facing another surgery is daunting...and I want him to know that we don't take these decisions lightly. But we know we are doing the best thing that is available to us. Hank is in such good hands with Dr. Siebert. I can't even imagine what his life would be like right now, if we had never done that first surgery!

Hank got to enjoy the golf course!
It's been a busy few months...we just had the "Inaugural Helping Hands for Hank Golf Tournament."  We had such a great time with the volunteers and golfers who came out to enjoy the day at the beautiful Rancho Murieta Country Club.  Thanks to our volunteers: My sister; Barbara Arthur, Anne Fiksdal, Danielle Morris, Michele Williams, Lori Alaniz, Beth McGaughey and Teresa Berry. I couldn't have made it through the day without you! And thank you to our donors, sponsors and golfers too! We learned a lot and can't wait to start planning the next one. Well...ok, so I can wait a little least until we get back from Hank's surgery!

Maverick going off to "Dog Camp"...
Speaking of...looks like I will be needing to wake the family in just a half hour! Guess I better go get ready to go! I will update the blog as we go!