Monday, August 10, 2009


It's been a week of ups and downs...not even sure where to start. Summer is winding down and school starts in just two short weeks. Mixed emotions around here. Charlie is thrilled to start Kindergarten. I am sad that my days of leisure are ending and I go back to being a taxi service managing three different pick-up times! Lucy loves everything... and then there's Hank. Hank is not excited for school to start. I don't blame him. He got ripped off this summer! Surgery and recovery have eaten up a big portion of it. But we have managed to squeeze in some fun here and there!

Last Friday, August 1st, the kids had a great time at karate. It was kid's night and they got to play games and eat pizza...and Jeff and I had a few hours to go on a quick date! It was so nice! At 9:00 we picked the kids up and came home. At about 10:00 pm (oh, did I mention that the kids don't go to bed before midnight these days?) Jeff came into the room and asked me if I had felt Hank's face lately. I said I had and asked why? He said that Hank's face felt really hard. And that it looked weird. I looked up from the computer screen and saw the look on Jeff's face. It's one I don't see often...reserved for serious situations, painful news or extreme stress. I jumped up and rushed to Hank's the calmest way possible, so as not to arouse suspicion from Hank.

I placed my hands gently on Hank's face. Both sides felt the same temperature, but the left side was definitely more than was hard. I looked at Hank's face and saw redness...and darkness...but he has had bruising since the surgery, so that wasn't out of the ordinary....

I tried to feel Hank's cheek by gently pressing on it. He hates his cheek touched...and he said, "Ow!" "Does that hurt?" I asked as I quickly pulled my hands away. "No...but it's tender and uncomfortable. I don't like it when my face is touched," he told me.

I looked up at Jeff and we both had the same thought..."something is wrong." Jeff suggested that I email Dr. Siebert and maybe we would hear back from him in the morning. I sat down and wrote a quick email to him. I tried to sound calm...but that I was worried....and then I titled it in a way that would get his attention: "We are FREAKING out!" I have been pretty even keeled through all of Hank's medical appointments and procedures. So I knew that Dr. Siebert would know it was serious.

Sure enough, about an hour later the phone rang. I could see on the caller ID that it was "University of Wisconsin" (abbreviated of course) and knew that Dr. Siebert was calling. I picked up the phone and heard, "How are you?" "Worried," I said. "Tell me everything," was his reply. He said he had just gotten out of surgery and saw my email. I finished telling him what we observed and he asked if I had a digital camera, "Take some photos right now and email them to me. I will wait for them," he instructed. Poor Hank, as if he hasn't been through enough... Jeff called Hank from the playroom where he was half awake, watching a movie with a now sleeping Charlie and Lucy. "Hey Hank, we need to take a couple of photos of you for Dr. Siebert," Jeff told him. I had Hank climb onto his bed, so I could use the blue background of his wall. I took a few shots, almost blinding Hank with the flash, in the process. It was hard to show the discoloration, but they were good enough, and I quickly downloaded and sent them to Dr. Siebert.

He called back immediately. "Hard to tell from the photos...wish I could examine him," he said. "But it looks like an infection. Cellulitis. Do you have a 24 hour pharmacy? Let's get him started on antibiotics." My heart sank. Cellulitis? A bacteria infection? In his FACE? At four weeks post surgery, I thought we were in the could this be. But Dr. Siebert is always cool, calm and collected. "Don't worry," he said. "This will take care of it." I gave him the number of the pharmacy and he told me he would call back. He called back and told me the name of the antibiotic. "Should we be getting on a plane? Because you know we will," I said. "Let's not do anything yet," he said, "I'll call you this weekend and see how Hank is." "Is the flap failing?" I asked. "No," he replied. "Have you ever had one fail?" I persisted. "Not at three weeks!" he said, "Never! Don't worry. He will be fine!" And with that we were on our own for the night.

I think Dr. Siebert is the greatest! But living in on the west coast and having your doctor in the Midwest or east coast, is not easy. Particularly in this case. But I am so grateful he called. By the time we got off the phone, it had to be 3 am in Wisconsin. What a guy!

Jeff took off at 1am for the all-night pharmacy. And at that time of night, only the really wholesome law-abiding citizens are in the drug store! (scary!) So now I was worried about Hank's infection and Jeff's safety! While Jeff was gone, I got online and read everything I could find about cellulitis. I found out it is a bacterial infection under the skin which can infect tissue, connective tissue, etc. Left unchecked it can be fatal. NICE! It's caused by two different bacterias...strep and staph. Now how in the world did Hank get this?

We woke Hank up and gave him his first dose of antibiotic and prayed that it would do the trick. We stayed home all day and kept Hank quiet. That night, we had a birthday party for a friend to go to. We had so been looking forward to this party and the chance to celebrate a good friend's birthday. But all of a sudden, we did not want to go. But Hank did not have a fever and was feeling good, playing with Lucy and Charlie. The sitter arrived and we filled her in. The party was in the neighborhood and we told her we could be home in a moment's notice! She promised to call if Hank started to feel badly, and filled with trepidation, Jeff and I left for the party.

It was a great party! The birthday girl looked beautiful, her husband had outdone himself and all went well. And even though we had a good time, I know we weren't ourselves and just hoped no one noticed. Because no matter what...the dark cloud of worry hung over our heads and we couldn't even bring ourselves to karaoke! I checked my phone throughout the night and was dismayed to see that I had missed Dr. Siebert's call! I listened to his message, which did not leave a return number, but he promised a call the next day. Darn! I knew I would miss it!

We got home and Hank was still up. Bright eyed and raring to go! Didn't look to sick to me! But I could see that the infection was still present. So we sent him to bed and began our second sleepless night, filled with worry. Dr. Siebert was true to his word and called first thing in the morning. He told me that it might be nothing, but let's finish out the antibiotic and see how things are. I asked if we should keep Hank quiet and restrict his activities. "No...let him have fun. It's fine!" he told me, "Don't worry. Seriously. He's fine!" OK, good enough for me, and with that we resumed life...keeping an eye on Hank, but no longer worrying every minute of the day.

With the worry behind us, we spent Sunday at my sister, Patty's house. Hank had a great time playing with his cousins in the pool, although we prohibited all diving. Dr. Siebert cautioned us with a "Don't let Hank belly flop on his face!" Good idea... Nice to just relax around family and hear about other people's lives!

We celebrated Hank's little sister, Lucy's 4th birthday last week. Pink...everything was pink...complete with streamers, balloons and princess decorations. It looked as if a bottle of Pepto Bismal had erupted all over our house! Lucy was the star of the show as she flitted around the house in her pink "it's my birthday" shirt and polka-dot shorts, and tiara. A morning of watching "Strawberry Shortcake" videos and anticipating her party made for a little girl's delight. Since Lucy hasn't formed any big friendships yet, except for the two family friends who were out of town, we made it a family party. But with five older cousins ranging in age from eleven to seventeen, and only one a girl, I was afraid that little Lucy would get lost in the mix.

But Lucy didn't care. She was caught up with the excitement of the day. She just wanted her cake, ice cream, decorations and presents. With my mom, "Grandma" there and Jeff's dad, "Granddad" there, she was feeling like the most important gal in the room...which she was! Lucy has been asking for a Nintendo DS since about three days after Christmas. That was about the time she realized that the new games that Santa brought her brothers had captivated their attention and she was now odd-man-out. And so for eight months Lucy has wished, asked, whined and begged for a DS. And so she got her wish...a brand new Nintendo metallic PINK. Lucy is the happiest girl ever and has been carrying it with her every minute of every day, proudly displaying it for all to see. Jeff and I are now experiencing a peace we haven't known in many fighting over games....just the blissful sounds of little hand-held games being played and the laughter of siblings as they share what their game can do! Priceless!

Each day, Hank's face has looked a little better, and his energy level has been high. Our days have been filled with the park, the backyard, cousins' houses and friends over. We've had "stay- in-our-pajamas" days and sleep-in until 11:00 days! (It is going to rock their world when school starts!)

We have had some nice visits with friends..."Aunt Susie" came by and brought Lily and Jackson over for a playdate with Hank, Charlie and Lucy. We hadn't seen Susie since our time together in New York. That was such an emotional time for all of us. Saying goodbye to Susie the day before Hank's surgery was heart wrenching for us. I didn't realize she wanted to stay for his surgery, and had never dreamed of asking her to do such a thing! But she had come so far with us and not to see it through...that was tough...but here we all were exactly one month later, and now able to see the progress Hank has made. I was wondering if the kids would notice Hank's face. Although they knew about his illness and surgery, they never said a word. Proving to me once again that children have a wonderful innocence and ability to accept each other for who they are and not what they look like!

Throughout this ordeal, we have tried to stay positive and keep our eye on the goal...getting Hank the help he needs so he can be well and have a "normal" life. And I think for the most part, we have been able to stay focused. But it hasn't been easy. After getting home from New York, I felt myself wanting to shut down. Not wanting to get out of bed. Not wanting to see friends. Just wanting to circle the wagons and hunker down with my little family. We had been apart and now I just wanted them all to myself. But more than that, I felt lost. What am I supposed to do now? After being proactive, it was now just time to sit and watch...and wait. Wait to see how Hank does.... And then Hank didn't want to go anywhere. Was he feeling like I was? Or was he just so happy to be home, he didn't want to leave...? I don't know. But all the kids continue to sleep together, rotating from room to room, wanting the space from each other during the day, but craving togetherness at night.

So here we are over a month has gone by since Hank's surgery. And Jeff and I are still struggling to get back to some normalcy. My friend, Noeleen who lives in Ireland has a daughter who went through the same surgery a few years ago. Noeleen has been urging me to take care of myself. But quite honestly I'm not sure how...She mentioned something the other day, that because of all the stress, we as parents endure, we need time to reabsorb all that has gone on. Maybe that is it... I'm glad to know that it isn't just me...that others feel this way too when they get home. I know I need to snap out of it. And I am trying. In the meantime I take my girlfriends' advice (they think they are my mom...)..."fake it until you make it." Sounds silly...but the more I say it the more I am able to function and continue with daily life.

With another surgery right around the corner there is fundraising to do and plans to be that's it....time to snap out of it and regain the momentum. But I mention it so that the other parents who go through this know that it's not unusual to feel this way! Hank's infection scared us. We didn't expect it and even now we aren't even sure he really had an infection...but I am grateful to Dr. Siebert, who erred on the side of caution and took quick action!

And so as summer comes to a close, and we prepare for school...we try to squeeze all the fun, leisure and freedom we can from chasing the ice cream truck for two blocks after it blasts past our house...only to have Jeff go zooming by in his truck giving chase. And then triumphantly returning leading the ice cream man playing, children bouncing up and escaping down the street....ahh...summer memories!