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!

1 comment:

  1. Hank..i know it is hard..but i believe that you are strong to face all the things. take care boy... i also have PRS, we share the pain of PRS.