Wednesday, June 25, 2014

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 13th 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 turned out just right...with ice cream and cake, laughter and fun. We plied the kids with 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 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 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 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 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 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!





Monday, June 23, 2014

Post-op Depression...

Day four post-op and Hank's recovery is slow. He doesn't want to come out of the fact, he doesn't want to get out of bed. This is a new one...he has bounced back quicker in the past...and I don't know if it's his age...on the cusp of being a teenager...(Tomorrow!!) or if it's the fact that he's had so much done this time and the recovery is just harder. Dr. Siebert took tissue off the underside of Hank's tongue and placed it in his upper lip...It's an ingenious technique, but makes eating nearly impossible and I can't help but wonder if Hank's recovery is so slow because he isn't getting enough nutrition?

In an effort to get some nutrition in him, I just made a trip to the grocery store in search of "Carnation Instant Breakfast" and "Ensure"...poor kid is going to have an interesting milkshake! As I was driving back, I had a thought...Going to the store is so normal... driving the car is so normal...carrying your groceries into the house is normal...But going to the store in Wisconsin when you live in California is not normal...driving a big rented Suburban feels strange...Home is the Ronald McDonald House is just surreal. That's what this whole thing is...surreal. You would think we would get used to this...but no...still can't believe that this is what we do. We travel for surgeries. Poor Hank...I hope that this is the last surgery! Or at least the last one of childhood! Five surgeries is just so much...and seeing Hank in pain and unhappy is too much for me!

Hank was asked during his hospital stay, "Do you ever think about your Parry Romberg Syndrome?"
Hank responded, "Yes." When asked, "How often do you think about it?" Hank's answer: "Every day." Ugh...I tried to keep a poker face...but my heart shattered. Here I thought Hank probably never thinks about it. We don't really talk about it...unless we are doing a surgery or something... "So what do you think about that, Mom?" I was asked, "I didn't know that Hank thinks about this every day, " I said, "but why wouldn't he? I think about it every day." We sat in silence for a minute and then Hank was asked if he knew I think about it all the time, "No...I didn't know." I realized at that moment that all my fears about what this condition was doing to him...beyond the wasting away of his face and the surgeries...what has this disease done to his self confidence or his quest for "normalcy". These are new unchartered waters...teenage years and grown up feelings.

A fun "Get Well" gift from Hank's former teacher
Day 2 after surgery was Saturday. Hank did not feel well at all. His pain level was consistent and we had to medicate. His tongue was too swollen so he could not take in solid food, but was able to use a straw, which is good. The highlight of his day was getting a package from his former kindergarten teacher, Robin Neilssen. Robin sent a package of "Chips Ahoy" cookies along with a card that had the definition of a Tough Cookie on it: 1. Someone with just the right mix of sweetness and strength. 2. One who doesn't crumble under pressure. 3. A fighter who's too busy kicking butt to sit down and cry, but know it's okay to do both. 4. A person who doesn't always ask for support but has lots of friend who would do anything to help.   Perfect! Hank really is the exact definition of a tough cookie! Also enclosed was a letter...the same exact letter that we prepared for Robin on the first day of Kindergarten! Attached was a photo of Hank, at age 4...and a drawing he did. What a precious memory and a perfect time to get it! Hank was so pleased...and has been guarding the cookies from his family...since he can't eat them yet...neither can we!

Anointing of the sick
Hank rested all day Saturday, with a few trips to the kitchen periodically. Sunday was much of the same. He didn't want to get out of bed, and barely made it to the kitchen. I realized that Hank is depressed. Hmm...should I be surprised? I think I would feel the same...
We let Hank lay around all day...until afternoon...but Sunday is a church day and we wanted to go to Mass and thank our Lord for getting us this far...and for Hank's surgery and recovery. Hank wasn't wanting to go...but when we said we were going to the little chapel at the hospital, he agreed. Kristina's family went too, and all nine of us made up half the congregation. After Mass, I asked the priest if he would bless Hank and Kristina as they were recovering from surgery. He quickly agreed and got out his "priest kit". He anointed each child with oil on their foreheads and then the palms of their hands. He prayed over both for a speedy recovery and peace of mind. Hank seemed to be in better spirits as we thanked Fr. Diego and headed back to the Ronald McDonald House.

Hank and "Sully"
The kids got a fun treat that evening, when some therapy dogs stopped by for a visit. Bella a bulldogand Sully a Chinese crested powder puff. Sweet dogs with great dispositions that seemed to enjoy all the love. It was great for the kids, especially our kids...who have been missing our border collie, Maverick. (I don't know why they would miss him...he's old and crabby and growls when the younger ones try to pet him!) Hank stuck around for a little while and then retreated back to the room...

Since we have not yet acclimated to Wisconsin time and are still on California time...late night snacks are the norm for us. Hank was hungry, and since eating is a challenge, we all went down to help. Applesauce, pudding, yogurt...juice...that was about it. He decided that he didn't like my smoothies...and the pain in his mouth prohibited anything else. As we sat together, we talked about his birthday and maybe we could go do something..."Maybe..." he said. What's this? A glimpse of hope? He already passed on going to the dairy at the University, so Charlie, Lucy and I went...and of course we brought back milkshakes for Hank and Dad...But the last thing I wanted was for Hank to sit in the room all day on his BIRTHDAY!
Well, at least I knew we would get out for Hank's doctor appointment...maybe getting some stitches out will make things better. One can only hope... Besides, I know the medications can make him a bit melancholy and he was taking less and less...

Stop watching me!
I have more to write...but I am stopping here. From where I am sitting in the kitchen, I have a perfect view of Ronald McDonald on a bench. I keep catching him from the corner of my's unnerving. I have been texting with my sisters while I sit here and write...and one of them teased me by telling me that Ronald roams around at night...That's it! I am sure that he is watching me right now and it is freaking me out! Ronald is a good far as clowns go...but I am not prepared to be confronted with anything clown-like on this trip!

Tomorrow will be a great day! We are getting up early to decorate the dining room and kitchen. Lucy made birthday signs for Hank and we are ready to hang them up. We have a few surprises up our sleeve for Hank...and know he'll enjoy himself!  We will get a smile out of him for sure!
Last night of being age 12!

Saturday, June 21, 2014

Surgery #5 and The Wearing of the Green

The alarm going off at 5am was a rude awakening for surgery day. I dragged myself out of bed and quickly got ready so Jeff and I could get the Hank and the other kids up. (Where one goes...we all go). Everyone put on their green, including Hank, as we were all "wearing green for Hank" and hoped others would too! We got to the hospital shortly after 6am and made our way to the third floor Surgery waiting area.
After checking in, it wasn't long before they were bringing us back the pre-op room where we would be until Hank went in for surgery.

Hank was in great spirits through all the pre-op stuff of vital signs, nurses, doctors, etc. He laid in the
bed in a light blue hospital gown...he is now too tall for the pediatric pajamas...The nurse asked Hank if he would like the liquid that relaxes them before heading in to surgery. He said he didn't want it and would prefer to just go under when he got there. Hank had a few concerns and voiced them: "I don't want to wake up during surgery," he said, "And please make sure I wake up afterwards.., and oh, I don't like the goop they put in my eyes, please rinse it out."  Time seemed to move swiftly as we met each team member: surgical nurses, anesthesiologists, residents and then finally, the man of the hour: Dr. Siebert! He came in with two associates in tow, explained what he was going to do, placed his initials with a Sharpie on Hank's left temple (to make sure they operate on the correct side), took a quick picture with Hank for our "Before" shot, gave Hank a high five and said, "OK, see you in a few!" I quickly put on my paper jumpsuit, shoe covers and hair cover, and prepared to accompany Hank to the operating room.

The goodbyes were quick and tender as Hank hugged Lucy and Charlie and gave his Dad a squeeze. "We love you Hank," they said in unison. The nurse and the anesthesiologist each took grasp of Hank's bed and we were off, rolling at a good clip, down the halls and through double doors. They chatted with Hank as we went, with me trying to keep up at Hank's side.
We pushed through the last set of double doors and into the operating room. I stood back as they got Hank's bed next to the table. He scooted onto the operating table as the doctors and nurses chatted with him. Hank chatted easily with them and answered their questions. There was no all.
I leaned down and gave him a hug and he wrapped his arms around me, giving me a pat on the back.
I realized that he wasn't the one who needed comforting at that moment...I was the one...and we both knew it. Stoic and fearless...the doctor placed the mask over his face and talked to him as the narcotics started to take effect. "Give him a kiss Mom!" said a nurse, as I sat by his side. I gave him a kiss and told him I loved him. "I love you too," he said in a sleepy voice. I watched his eyes slowly close and then reopen as he struggled a bit against it. "It starts to smell funny, doesn't it Hank?" said the anesthesiologist as Hank's eye fluttered. "Sorry about that! Does it smell like your little brother's dirty socks?" Hank let out a little laugh and that was it. He was out. I felt my heart leap into my throat and the tears welling up in my eyes as the nurses looked at me with empathy and the one next to me placed her arm around my shoulders. "We'll take good care of him," she said as she turned me towards the door. I stopped and took one more look back, not wanting to forget the scene.

As we headed through the doors and down the hall I asked, "Where is Dr. Siebert?" Realizing he had
not been in the OR when I was. At that moment I heard a commotion of voices as Dr. Siebert and his two associates came around the corner and headed towards us. "There you are!" I said as he approached. "I had to check on another patient," he exclaimed happily. "Are you OK?" he asked. I nodded as he gave me a hug. "Don't worry, he'll be fine!" he said, "we'll take good care of him." "I know," I replied, "I'm not worried, it's just hard to leave." "See you in a little while!" he exclaimed as they hurriedly headed down the hall.

I was brought back to the room we started in and reunited with the rest of the family. "How did he do?" asked Jeff. "Like a champ!" I said, as I started to cry, "he showed no strong." We now had at least two and a half hours to wait. We were given a pager that looks like the pagers they give you at restaurants to let you know your table is ready. Except that this one has a screen that the OR sends text messages to.  The first message came through about 45 minutes later: "Surgery has started. Hank is doing well at this time." We headed to the cafeteria to get some breakfast and coffee. The second message came an hour and a half later, "Surgery is progressing. Dr. Siebert is still working." By now, Kristina's family had arrived and were in the room next to us. We had the chance to visit a bit, and then headed to the waiting area outside the surgical rooms.

Kristina's mom, Karen and little brother Brandon, joined us in the waiting area, where we could plug
The Neilssen Family in Indiana
in our devices and connect with the outside world. We compared notes, chatted and tried not to stress out over what was happening with Hank and what was to come for Kristina. (so nice to have the support of a friend who is going through the same thing) My Facebook was blowing up with all the photos of people posting their pictures in green! What an amazing blessing and distraction for us, as we watched the photos pop up and the sweet messages for our boy! I couldn't wait to show him!

As two and a half hours came and went, we got our last message from the OR: "Surgery is finishing up. Please return to your Pre/Post". That's all I needed to hear, we grabbed our stuff and headed to the room. It was another 30 minutes before we heard from anyone. Finally a nurse came in and said that Hank was heading to recovery and they would come and get us once he was awake. I tried to get in to see him earlier, but she wouldn't budge. We had to wait until we saw Dr. Siebert anyway...but it was worth a shot.

A little bit longer and here came Dr. Siebert, big grin and exclaiming, "Hank did great!" He sat down on the only available seat...the trash can, and told us the details. He talked about the incision sites and how he debulked the jawline and rearranged the tissue around the eye and cheekbone and between the mouth and nose, as well as the work done to give Hank the left side of his upper lip, which had been missing. "Hank is going to be mad at me," he said shaking his head, "the mouth stuff hurts for a couple of days...he is going to be mad!" (For the record, Hank is not mad...and has never been mad at Dr. Siebert). He talked with us for quite some time, and then headed off to see Kristina, to get her ready for surgery, while we waited to see Hank.

At long last, a technician came in and got us, "just one parent at a time," she said. "You go," said Jeff, knowing how eager I was. I followed her through the double doors and into the recovery room, where Hank laid in a bed behind a curtain. His eyes were closed but he murmured when he heard my voice. "He's in a lot of pain," said the recovery room nurse, "I am trying to get it under control for him." I reached out for his hand and told him how good he looked. I explained that he had an incision over his eye and his eye looked swollen shut, and he had the plastic wrap on his cheek to minimize swelling and hold everything in place.

 As I looked at him, I noticed the tears, escaping under his closed lids, down his cheek and pooling in his ear. I asked her for a tissue and she handed me gauze. "I'm just going to get this little bit of liquid out of your ear," I told Hank. I blotted it out, tears mixed with blood, and felt my heart give that familiar lurch that I feel, seeing Hank after surgery. I held his hand and watched the monitors...heart rate, oxygen level, blood pressure...the oxygen tube running to his nose, the drain coming out of his head, the IV in his arm...this boy has done this five times...this strong, resilient, courageous boy...I felt the surge of pride and pain all at once, just wishing that things were different and knowing they can't be.

The nurse slowly got Hank's pain down to a manageable level, so I switched places with Jeff, giving
him a chance to be with Hank. Soon, they came and got Lucy, Charlie and I, and we gathered our stuff and Hank's too, and followed Hank, bed and all, into the elevator to go to his room. Last time we were here, Hank got pushed over to the adult hospital...not what we wanted...not kid friendly and for the parent staying with him...difficult. ("Hello bathroom!"...or should I say "Toilet behind the curtain"?) But this time...his room was wonderful! Maple color cabinetry and floors, muted and beautiful in blues and greens. As Hank got settled in, Lucy and Charlie stood by his bedside, watching the monitors, listening to the nurses talk and soaking it all in. The nurse explained the pain system to Hank...0-10, with 10 being the worst. "what is your pain level now?" she asked, Hank held up both hands, "Eight? You are at a level eight?" Hank gave a nod. I took the nurse aside, "This kid has a high tolerance for pain," I told her, "If he says it's an eight...guarantee's a twelve for someone else." "Got it!" she responded, "Thank you for telling me. It makes a difference."

We sat in Hank's room, talking to him, while Lucy gave him the picture she colored while he was in surgery. Hank reached up to thank her and pulled her down into a hug. Lucy and Charlie were concerned and Lucy came to me and whispered, "I hate seeing Hank in that bed...poor Hank." I felt the same way...a little later, Dr. Siebert came by to see Hank. "Hi Hank!" he said with a big smile! "How are you feeling? Are you mad at me? I know the mouth stuff hurts!" Hank mumbled that he wasn't. Hank's left eye was swollen shut, and Dr. Siebert leaned down to look at it, "How's that eye? Can you see out of it?" he asked as he reached down and gently popped the lid open. "Oh HI!" I exclaimed as Hank looked at us with both eyes! He didn't realize he could open it! Dr. Siebert explained to Hank what he had done in surgery and asked Hank what he thought. Hank gave him two thumbs up and what passed for a smile. I asked him to pose with Hank for the "After Photo". "If anyone asks what happened, Hank, just say...You should see the OTHER guy!" Hank gave a laugh and they posed for the photo.

The rest of the afternoon and evening consisted of us trying to keep Hank comfortable and pain-free.
He couldn't eat because of his tongue and lip...we could get him to sip water and I marked down the
L: Morning photo pre-surgery/ R: Afternoon photo post-surgery
amounts on the board after each time. He began to feel nauseous...this was a new one. Hank has never been sick from anesthesia. "I'm going to be sick!" he exclaimed as I scrambled around to find something. I found a bucket/bowl thing in the bathroom and put it in front of him. Oh, how I was regretting staying behind as Jeff took Lucy and Charlie to the cafeteria for food. I am pretty stoic myself...but I am not good with vomit...which has made those times in motherhood quite difficult...when someone throws up...I throw up! "Hold it together!" I told myself, as Hank became violently ill, throwing up every last drop of water we had given him over the last few hours. I got a washcloth and wiped at his mouth and nose. The nurse took the bowl and gave him a new one. "Oh....she said...I don't think he is sick from the anesthesia..." Apparently Hank had swallowed quite a bit of blood during the surgery and it had come up with the water. I later found out that of all things that the body can't handle is blood in the stomach. After that, Hank felt better...his pain level never went lower than a seven, but he started to get hungry and was able to keep water and apple juice down.

Dr. Siebert checked on Hank again, later in the day. He filled us in on drain removal and when we could go home. He talked with Hank a bit and then was off!

Hank continued to have pain at a level seven for the rest of the day and night. He was able to keep the apple juice and water down...had a little bit of pudding. He was in and out of sleep, waking up long enough to read a text from a friend and then sleep again. The kids asked who was going to stay the night with Hank. Before I could show them my bag, packed for an overnight stay, Hank replied, "Dad." What? DAD? Ouch! "It's just that you stay every time, Mom," said Hank, feeling my disappointment emanating through the room, "Please don't be offended." What could I say? Of course my feelings were a bit hurt...but I get it...a boy needs his Dad...but really? I have to stay at the hospital when the only real bathroom is down the hall through two sets of double doors? And Jeff gets to stay when there is a fold out bed, and full bathroom with a SHOWER? Figures.

Cousin Thomas and dogs all in green!
Jeff went back to the Ronald McDonald House to get a few things while I showed Hank a few photos of the many people who posted their photos of themselves, family members, co-workers and even dogs wearing green! He chuckled and made small noises of appreciation. I told him I had lots more, but we could wait until he felt better. The nurse and I got Hank up, so he could use the restroom. When he was done, I came in to help him back to bed. He was looking in the mirror and had his hand on the plastic wrap on his face. He looked at me with tears in his eyes and turned and wrapped his arms around me. "I'm sorry Hank," I said, trying to keep my own tears at bay, "Is it the pain?" He shook his head, "Is it how you look?" He said, "It's all of it." many times can a mother's heart break? This is the worst! I told him that it would be better in a few days and in the long run, he would be so happy about it...I held him until I felt him relax. This is just too much for a 12 year old to have to deal with!  We got him back to bed just as Jeff and the kids returned.

It was getting late and we still hadn't seen Kristina! Lucy said she would like to come with me, so Lucy and I met Karen at the elevators and she brought us back to Kristina's room. Wow! Kristina looked great...and she was sitting up eating spaghetti! I felt a twinge of envy as I saw how good she was doing and how hard everything was for Hank. But then I remembered Hank's third was out-patient and he was eating pizza that first I understood...just wished Hank was doing as well. Lucy started feeling anxious, wanting to be with Hank. We said our goodbyes and headed back down to Hank's room. 

The kids were tired, I was tired...but we didn't want to leave. Charlie laid down on the couch and Lucy sat on Jeff's lap. Hank was asleep once again and I checked Facebook to see all the new photos. Suddenly Lucy broke out in tears. "What is wrong?" Jeff asked. "Oh...poor Hank!" she cried. "I feel so bad for Hank!" Jeff consoled her and rocked her as she sobbed. That makes three kids who shed tears today, since a little earlier, I had found Charlie curled up in a ball, sobbing over Hank. These kids were at the hospital from 6 am to the now 9 pm and were wrung out and exhausted...emotionally and physically. I gathered them up, we said our goodbyes and  headed out to the Ronald McDonald House.

Charlie fell asleep the minute his head hit the pillow. Lucy cried in my arms over her brother, until she finally passed out. I laid there, worrying about Hank and Jeff, hoping they would get some sleep...and listened to the very loud phone conversation taking place in the room next door. I now know that woman's whole if I could just figure out which one she is...

The next morning, Jeff sent a text telling me they were taking the drain out of Hank's head. Hurray! That was a good start to the day. However, Hank's pain level had shot up to a nine and they were fighting to bring it down. Jeff told me to stay away for the time being, as Hank didn't need his siblings there. Jeff finally said that he would walk back from the hospital so I could go up and see Hank. I headed up as soon as he got in, and walked the five minute walk to the hospital's front doors.

Hank was asleep when I got there and I met his new nurse, Bill. I immediately liked Bill. He knew his stuff. He had managed to get Hank's pain all the way down to a three or so. Had Hank off the IV pain meds for 8 hours and was focused on getting Hank to where he needed to be in order to leave the hospital. When Hank woke up, his pain level was way down. I ordered him a fruit smoothie and we talked and hung out. I saw through Facebook that Kristina was released earlier that morning and was now chatting with Ronald McDonald, who stopped by to visit the kids at the House. (I am not fond of clowns, so I think I am OK with missing it!) However, Lucy and Charlie sent me a nice photo...

Dr. Siebert's resident showed up a while later and asked Hank if he wanted to go home or stay. "Home!" Hank exclaimed. Ok, you need to walk around a bit first. Hank was given another dose of pain meds to manage the pain and he got himself dressed as Jeff and the kids showed up.

We did all the necessary paperwork, met with the pharmacist, ordered Hank a couple of fruit smoothies for the road, and prepared to go. But first Hank had to prove he could get out and walk and be steady on his we took at walk to the elevators and headed downstairs to get his prescriptions. Hank was hilarious. His hair was messy and as we walked by the nurses station, he turned and said, "I know I shouldn't be going out like hair is a mess!" What a far cry from
Bill the awesome nurse and Hank!
past surgeries, where he hid his face. This time he was making a big joke of it! The nurses thought it was a good joke and he left with a bit of a swagger...At the pharmacy, he asked the girl at the counter for a comb, because his hair was a mess and he was a bit embarrassed by it. So glad his sense of humor has remained intact! We made it back to the room with no problem, once again Hank amazing me with his strength.

With everything in hand, Hank was released from the hospital! It was about three in the we headed out the door. His nurse, Bill, had been joking around with Hank the whole time...both of them giving each other grief. Just what Hank needed! No wheelchair for Hank...he walked on out of there!

We went straight to the Ronald McDonald House, where Hank promptly got into bed, turned on his Tablet and started reading. Already, he seemed more relaxed. Now, I would like to say that this is where the day ended...relaxing at the house, monitoring Hank's medications and pain levels...keeping him comfortable, getting him to eat...and while that is all true...our lives are way more exciting than that!

Earlier in the afternoon, Jeff had noticed an inflammation on Charlie's leg. We decided we better keep an eye on it...and so that night we checked it again. Good Lord! What was that? It was swollen and hot to the touch...and it was 9:30 pm! Jeff said we needed to take him to the ER. "Oh, I said," it can wait. So Jeff drew dotted lines around the inflamed area. About 20 minutes later, we looked at Charlie's leg...the inflammation had grown well beyond that dotted line. I grabbed my purse and keys, "C'mon Charlie! We're going to the hospital!" Charlie was less than thrilled as he trailed behind me.

Seriously? Didn't we just get one kid out of the hospital? Now I was heading in with another one. Two doctors looked at Charlie's leg, but couldn't decide if it was anything...should they give us antibiotics or should they send us home?  In the end, they said it was infected...called it Cellulitis, gave him a dose of antibiotic and a prescription to fill the next day. It was midnight before we got home. As I finally laid my head on the pillow...I reflected over the last two days...I know they say that God doesn't give us more than we can handle...but sometimes I wish God didn't think so much of me!

Wednesday, June 18, 2014

The Road To Madison

It's midnight... and I am wide awake. In just 6 hours, we need to be at the hospital to start the pre-op process. Hank's surgery is at 7:30 am, and I am starting to feel the anxiety. Hank, on the other hand, is in great spirits! In fact, he and Jeff are downstairs, raiding the refrigerator at the Ronald McDonald House...cut-off time for eating...

Hard to believe that surgery day is here...the road to getting here was quick and busy with fundraisers, birthday parties, packing, driving and flying!

The Gibbs kids and Roide Kids
The "Pizza with a Purpose" fundraiser for Hank last Tuesday was amazing! With only 6 days to plan it and get the word out, I was worried that no one would show up. But with the help of friend Jaime, who got her radio stations to play PSA’s about Hank, the support of Old Mission School, and the power of Facebook and our amazing supporters posting about it, the turn out was more than we could have hoped for!

Incredible staff at CPK

We kept the California Pizza Kitchen busy from open to close, filling the restaurant and causing the wait staff to sweat it out all day! I think we blew the kitchen up at lunchtime and we packed the place at dinner. One waiter told me that in the 18 years he had been with the company, he had NEVER seen a fundraiser like ours! We can't thank everyone enough for their huge show of support for Hank and our family! Hank was so pleased and that show of support changed his attitude... he has been ready for the surgery ever since! We raised $845.00 that night, which was more than we expected. The restaurant fundraisers usually don't make that much, since only 20% of the bill goes back to the beneficiary. So the fact that we made that much...very amazing!

Hank will turn 13 while we are in Madison. So of course...he wanted a birthday party before we left! (that's not stressful or anything). He decided he wanted a slumber party...but our upstairs is small and it was last minute, so he invited just a handful of friends. Lucy and Charlie decided to run for cover at their Granny's house, giving Hank some much-desired privacy and room to spread out with his friends. Moving to a new school this year was scary...especially in 7th grade, but the entire class is wonderful and he has some great friends. It was the easiest party we ever had! The park is nearby, and they ran down there to play basketball, Jeff Barbequed dinner for them, and then it was video games, movies and a little doorbell ditching. The perfect party for 13 year old boys! I gave up on them at 2am and went to bed. They pooped out about 4am and were up early to play more games... so with minimal sleep, we started our weekend of packing and preparing for departure.

Father's Day snuck up on us and although we wanted to do something special for Jeff, we ended up just
going to church and then to a great burger place for lunch. Of course, I had to have Hank blessed, heading into surgery and all...and Fr. Russ at the Old Mission was more than happy to send Hank off with a blessing for a successful surgery and speedy recovery! And then it was back to packing!

By Monday we were packed and with the exception of needing to put in a few hours at work, we were ready to go. A three and a half hour road trip got us to San Francisco where we stayed overnight to catch our 7 am flight to Chicago. Five people and 2 double beds is not a good combination, and I drew the short straw, having to share the bed with both Lucy and rolls around and one sleeps like a me a night of more time awake than asleep...and with a 4 am wakeup call...well, suffice to say...we are exhausted! The kids loved the flight to is SO much easier to travel with them these days...We touched down in Chicago to 92 degree weather and high (for us) humidity. (my hair has taken on the humidity and is approaching afro status...) 

We had a happy arrival to the Ronald McDonald House, here in Madison, Wisconsin. Kids were excited to see the house and jog their memories, and Jeff and I were happy to have a place for Hank to recover in, as well as be able to have our whole family together.

Waiting out the tornado
This morning were awakened by a knock on the door. I ignored it. They knocked again. It was a RMH staff member. I opened the door to hear her say, "Hi...Tornado. Head to the basement!" Ack! I shut the door and woke the kids up with a "TORNADO! GET UP!" Poor kids jumped out of bed and staggered around like a bunch of drunks! Threw on robes, put on slippers, grabbed their tablets and Lucy grabbed her doll...and we headed to the basement. Once there, Lucy looked at me with tears in her eyes, "I forgot my puppets!" And off I went, risking life and limb for her puppets...Luckily, the tornado was south of where we are and we were able to resume our day after about a half hour.

Today, Hank had his pre-op appointment with Dr. Siebert, his surgeon. While we were there, we met up with the Diaz family from Atlanta, Georgia. Thirteen year old Kristina also has Parry Romberg Syndrome and is having surgery with Dr. Siebert on the same day as Hank. It was so fun to see them and we ended up spending the rest of the day and dinner with them. So great to have another family by our side, who totally understands what we are going through. The kids have hit it off great and I know Hank and Kristina will be great support for one another, not to mention the fact that there is another father here, who Jeff can connect with! Mom Karen and I have been texting and messaging and calling each other for quite some time and I already feel like I know her well! Feeling very blessed by all this!

Hank's appointment with Dr. Siebert was good. Dr. Siebert explained everything to Hank and Hank
had a lot of questions. Hank is now at that age where he wants to know everything about his medical care. It's nice that he has a part in things now, and he asked great questions!

After our appointment we gathered at the Ronald McDonald House and the kids got acquainted. They hit if off great, judging from the cheering and loud laughter! Dinner for Jeff's Birthday and we called it a day...which brings me back to Hank's refrigerator raid. I can hear the thunderclaps outside our window and pray for a tornado-free night and early morning! Hank has been in great spirits, but I know tomorrow morning might be a little different. He will get nervous, and so will I. Praying for strength for both Hank and I...and for great results from this surgery. We will be wearing our green for Hank!!
Lights out...tomorrow is a big day!
The kids getting acquainted!