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 swollen..it 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 open...no 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 arrived...so 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 that...as 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 this...it 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...

4th Surgery Day

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

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

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

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

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

I joined Jeff and the little ones in the kids' playroom and for the next few hours we colored with the kids, grabbed a bite to eat, went outside and then sat and waited. The nurse had given us a pager and after the 45 minutes, we got our first text message, "Procedure has started. Hank is doing well at this time." The second message came an hour later..."Still working. Hank is doing well at this time." Pretty cryptic...but good!

Eventually, Jeff took Charlie downstairs and outside for some fresh air as Lucy and I waited in the playroom for the next update. And then...there he was! Dr. Siebert and Luanne were walking into the playroom. "Where is everyone?" he asked with a big grin on his face. I called Jeff's cell phone, but there was no answer...I knew if he saw I had called he would make his way back. Dr. Siebert started to explain the surgery to me, as Jeff and Charlie walked in.

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

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

The nurses pushed Hank's bed down the hallways towards the elevator where Jeff and the kids were waiting. I was confused...the rooms are just around the corner from the recovery room...where were we going? We got on the elevator and I don't even know if we went up or down...but when the doors opened, we started a long trek...we took another elevator continued to wind our way somewhere...but where? We ended up in the main (adult) hospital...on the pediatrics floor. Wait! What is this? As they wheeled Hank's bed into his room, I felt a sense of panic as I noticed the toilet in the corner and the view of the rooftop. This isn't the nice new wing that we took a tour of? Where are the views with the trees? Where was the private bathroom? Omigosh! I bet they don't have a Playstation like they promised Hank yesterday!! Nooooo! We must move him! But it certainly wasn't the nice nurse's fault and I didn't want to offend anyone! So I discreetly inquired as to why we weren't where I thought we would be. "This is for the non-respiratory pediatric patients that are probably only here for one night," explained the nurse. "Well, I guess that is good," I thought to myself wondering where the bathroom was for the rest of us who would like a door to the bathroom! Especially since I was the one staying with Hank!  I did find the bathroom down the hall...a little bit of a hike, but I could handle it! 

Hank slept for awhile and Charlie and Lucy quietly colored pictures. At one point I looked up and saw Lucy and Charlie standing next to Hank's bed, looking forlornly at him. "Poor Hank," they said. And I realized that they had no real recollection of the previous surgeries...and that for them, it was all new...and startling!  Lucy couldn't seem to stay away from Hank's bedside. She held his hand and looked at him with such sorrow...and then turned to me with tears in her eyes. "My poor brother!" she cried...running into my arms. She cried on my shoulder for awhile and then looked up at me. "I feel so bad!" I gave her a hug and told her that he would be OK. One of the reasons I brought Lucy and Charlie with us, was that we wanted them to learn true compassion...I guess we can consider this accomplished!

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

 

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

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

Happy 11th Birthday, Hank!

Donuts for the Birthday boy!

Today is Hank's 11th Birthday.  Eleven years with this kid...We are so blessed!  Hank has been through so much in the last few years...and yet he remains the same kid that he's always been. Someone once suggested to me that Hank was probably a more compassionate person, because of what he has been through...but that's not quite accurate. Hank has always been a very kind and compassionate child. Always the first to check on someone who is hurt, quick to cheer others up...sure he understands illness, surgeries, and recovery.  And he   is empathetic for those going through something challenging...but to say that he is more compassionate...no...always was and always will be...it's who he is.

Hank's entry into this world was traumatic at best. It was a long labor and he was not breathing when he was born. It was an emergency...lights flashing, loud bells and beeping and a lot of people running into the room. They held him up, with a quick, "It's a boy!" and whisked him across the room. "Breathe Hank, breathe!" the nurses quietly chanted.  I remember looking at Jeff, "They just named our baby," I said. OK, so we were pretty sure if it were a boy, his name would be "Henry" and we would call him, "Hank"...but we liked the name Steven, too! Soon, we heard a small cry that turned into a loud wail...relief! But we weren't out of the woods yet. I ended up with a femoral neuropathy, which means my brain wasn't connecting with my legs, and really...I couldn't feel most of my right leg and half of my left..essentially paralyzed, which lasted for 3 months! And poor Hank...his head was so beat up from the doctors misuse of the suction thing...31 times, she used it. (The hospital's protocol was 3 uses)...and he was suffering from headaches at birth.

Hank at 6 months

Yes, we could have sued the hospital, the doctor...the people that make that suction thing...but I always had it in my mind that it was OK...Hank was OK and that's all that mattered. But in the last three years, since Hank was diagnosed with Parry Romberg Syndrome...I have often wondered if that difficult birth, is what caused or triggered his PRS...There are cases of PRS that have started because of a trauma...and certainly, that was a big trauma!

Happy Hank!

From that difficult beginning to a strong and stoic eleven year old boy! Hank has overcome so much and I am amazed by his strength...then and now! Health-wise, all has been quiet since his last surgery 2 years ago. But a new turn of events has us puzzled. Hank is having "ice-pick" headaches. They feel like someone is stabbing you in the head! It's terrible..and when he gets them, his hands fly up to the spot and he cries out in pain. It's all new...just the last three days...in the evening. Wonder if it's a food allergy (too much ice cream?) or something else more sinister... I've been dragging my feet about taking him in to see his amazing surgeon, Dr. Siebert. It's been two years since he has seen Hank...we know Hank needs another surgery. The flap seems to have slipped a bit, making his eye appear droopy and his cheek needs "debulking". I was hoping to wait...Hank doesn't want another surgery. (who would?) So I was waiting...but now these headaches...it's time to go in.

I have made the necessary calls to schedule some time. We are waiting to hear when the Operating Room at the Children's Hospital in Madison will be available. We are hoping for July...to give Hank enough time to heal. If we can't get in before August, then we will wait until October and time it around Veteran's Day, when the kids get a day off.  Our thought is that it would be tough to start 6th grade all bruised and battered from surgery...but 6 weeks into the school year, he can tell the kids he is going in for surgery and it won't be that big a deal. (keeping fingers crossed)

Hank and Lucy playing "Stratego"

For now, we will continue to monitor the headaches and I am making an appointment to get Hank's eyes checked. Maybe he just needs glasses? (Thanks for suggesting that, Theresa!) Hank is enjoying the lazy days of summer. Swimming, eating ice cream, reading, cooking, playing video games, time with friends, sleeping in...staying up much too late...I love these days where I have all three kids at home! Hank has been digging around in the garage and found my old Parcheesi game and Stratego game. The kids think it is so fun to play the games that mom used to play at their age! (I think it's fun, too!)

We are thinking of all our PRS friends who are in Madison having surgery, recovering from surgery or scheduled for surgery this summer...Avery and Kristina, Justin, Kelsie and Christine. We are all so fortunate to have this life changing surgery available, under the competent care of Dr. Siebert. I can't imagine what Hank's life would be like right now, if we hadn't found Dr. Siebert! He is a hero to so many!!

Time to get back to celebrating Hank's birthday. The house is decorated with streamers and birthday signs.  He has had his breakfast of donuts...the day is his! Whatever he wants to do..It's been an amazing eleven years with this boy...Hank has taught us what is important in life...he has shown us what true courage is...and I strive to be more like him!