Thursday, September 18, 2008

Time flies!


Sorry no updates lately...I had planned to do one Sunday, but then the blackout hit and put me out of commission for a few days! Zack is doing GREAT! We decided he had recovered enough to go to King's Island last Saturday with our free tickets...we were just careful about what he rode. He started back to preschool yesterday and even went to soccer practice last night. They spent most of the time taking pictures, but he did get to run a little bit and kick the ball a few times. We're trying to ease him back into his normal schedule...one more week until he's considered healed enough to treat like a normal kid.

The swelling has continued to come down even more this week...I'll try to get another new pic when I get a chance. Suffice it to say that he looks great, acts great, and we couldn't be happier to have it all behind us again!

Tuesday, September 9, 2008

Home sweet home!

We're home! We had a lazy morning at the hotel, and a fairly uneventful flight home. It was raining pretty hard in Dallas, and then the plane was having some mechanical issues that needed checking, but we were only delayed about 20 minutes. The first half was pretty turbulent, but it finally smoothed out, and none of it bothered Zack. Unfortunately, when we picked up our luggage in Dayton, it was soaked! They must have had it sitting out in Dallas for awhile. So, the laundry has begun!

The kids were all pretty happy to see eachother. Zack's appearance hasn't really bothered him, but he was worried what Alex would think. Alex was fine, but they are already scrapping over the new toys that Zack got while we were gone and that Alex conned the grandparents into as potty rewards. Liz made a couple comments that Zack looked 'freaky', but they rolled right off him, thank goodness.

So life is pretty well back to normal...kids fighting, homework not done yet, and mountains of laundry! I'll try to continue the updates & pictures as the swelling continues to go down and he gets looking better and better. For now, I just want to thank everyone for your kind notes and well wishes that got us through a very difficult week away from home. It meant a lot to know you were thinking of us and supporting us from far away!

Monday, September 8, 2008

Another great day!

We had a bit of a rough night last night. He kept waking up and had problems getting his eye open each time and refused to go back to sleep until he could. But, our last full day in Dallas was a good one. We started the day by heading to a big mall here called the Galleria. Zack liked the little play area, but we had to leave when he starting thinking he could jump off things! (BTW...yes, I realize he's wearing the same shirt as yesterday...somehow I miscalculated the number of button-down shirts he'd need, so we're having to do double-duty!) We did some mall walking, then headed to Toys R Us to get a little celebration gift. He started to say he was tired, so we came back to the hotel to get him a nap. Tonight, another local cranio family came to visit and brought us another wonderful dinner. Thanks so much, Kerre! He unfortunately refused to get a picture with sweet baby Jack, but was more than happy when we got back to the room to pose with his Sponge Bob Whoopie Cushion! Another hit gift from Eden! I asked him today what his favorite part about Dallas was, and his answer was, "Go-Karts!" I then asked him what his least favorite part about Dallas was, and he responded with "Nothing, really." Funny, I can come up with an idea or two!

His right eye now stays open pretty well on its own. I was a little worried after his nap, but it opened right up when he woke up, so I think we're good there. The left one he can now get open with his fingers, but can't keep it that way, so he pretty much leaves it alone. I think by tomorrow it may be open too. We fly out around 2:00 and will be back in Dayton around 5pm. It'll be so good to be home and see Alex and Lizzie again and finally go back to normal! Dr. Fearon has asked us to send pictures at 6 weeks post-op, but will leave it up to us whether we feel the need to come back for follow-ups. He didn't leave any openings, so he said Zack will have no restrictions at 3 weeks post-op. I still can't believe how well he's done this time!

Sunday, September 7, 2008

I'm magic!

We've had a great day! Zack requested McDonald's for lunch, so we stopped by on the way back to the hotel. We mostly hung out today and watched TV in bed. Dave and I napped, but I don't think Zack did! When it was time for dinner, he decided he wanted TGI Fridays and wanted to eat there. So, off we went! The quote of the night out of him was "I'm magic! Really, I am!" He's managed to keep his right eye open a slit most of the day. Every now and then he requests a warm washcloth to rub it a bit and get it back open. He has just amazed us every step of the way! Here are some pics from today:

1pm - getting settled in with his washcloth:

1:30pm - enjoying his chocolate shake:

6pm - watching tv with his Power Ranger from Eden

8:45pm - finally crashing for the day:

Eye!


We have eye!!!!! Dr Fearon came by and taught Zack that if he pulled up and down on his right eye, he might be able to see. A warm washcloth later, and he got it open, and there is no turning back! His attitude did a 360...we have our Zack back! His comments have ranged from "I didn't know we had a clock in here." "Where's that door lead?" "Ah, nice" (when he saw the bathroom.)

He's got to get his hair washed and then we are outta here!

Saturday, September 6, 2008

Real room!


We're finally in a real room! He was ready to go earlier, but we had to wait for a bed to open up on the pediatric floor. He insisted on real clothes before he'd go anywhere. He really wanted to walk, but settled for Dave carrying him as long as he could push elevator buttons. We're right across from the playroom, which closes soon, so we raided it for a bunch of movies and a keyboard, which he wants nothing to do with now, but we suspect he might later. He wants nothing to do with the new bed, so he's going to sit up and "watch" power rangers now. He's already starting to act more relaxed.

His blood count was still good (10.4) and he's drinking well, so he's unhooked from everything except an iv in each hand, just in case he needs anything. The swelling is bad, but his mood is better than we ever expected. We'll go back to the hotel at some point tomorrow and fly back to Cincinnati Tuesday.

At this point, feel free to call us on our cell phones. We have them on vibrate and won't answer if it's not a good time.

Bowling...


Quote of the morning: "Mom, for some reason, everytime I lift my head up, it feels like a bowling ball."

He is still doing great! He made it through the night without his right eye swelling shut. From experience, we haven't hit the peak yet, but so far, so good. His mood goes up and down, but stays mostly pretty somber. He's kept lots of Gatorade down and if the jello he just had stays down, then he'll get to order some breakfast.

We just saw one of the neurosurgeon's colleagues. The craniofacial surgeon said he'd be here around 9 or 10, and if all goes well, Zack will get moved out of the PICU after that. The goal for today is to gradually get unhooked from most of his attachments (and to keep that eye open!) He already asked what will happen if that one closes too, so I know he's worried about it as much as we are. He doesn't want me to take a picture this morning...I'll try to get one the next time he sleeps.

Friday, September 5, 2008

Back in business!

Zack wants everyone to know that he's feeling good again. He says one eye is already swelled shut and he hopes the other one doesn't close too. He's watching the Incredibles and downed a glass of Gatorade. He thinks his Power Ranger from Eden is cool. He's feeling "thumbs up."

I can't believe the difference half an hour makes around here! He's acting great again! He's had no pain medication, and they say the ativan is long worn off. They are going to come clean his incision in a bit, and if that bugs him we'll do some Tylenol or Ativan then.

Swelling fast...



Dave went to grab some dinner, and when he came back, we decided Zack was ready for some Jello (which he insisted on eating himself.) The swelling/bruising had started pretty bad on his left eye. I ran down to grab a bite and came back at 6:30, and the difference in just half an hour was amazing. I expect that eye will be fully shut much sooner than I expected. Poor little monkey keeps crying that he just wants to go home. He's breaking my heart. He still says nothing hurts, which I can't believe by the size of his head, but so far he hasn't needed any pain medicine. He's settled down a bit watching Ice Age. Hopefully he'll manage to rest well tonight, though I don't hold out much hope for Dave and me...sleep doesn't really happen in the PICU.

Waking up...


The Ativan's wearing off, and he woke up and wanted a drink. A few sips of water later, he threw up all over the bed. We got everything changed and settled him watching tv. Can you believe we already got a smile out of him??? He's doing so much better than we imagined!! He's in great spirits, pretty quiet, but answering questions in true Zack style. The swelling has started a bit, but isn't bad yet. He already has the nurses wrapped around his little finger! He wanted some toys, so Dave went to get the package from Eden and family for him to open in a bit, and the nurse brought him a teddy bear. I thought he was asleep, but as soon as Dave walked in, he sat up and said 'Where's my package?' Time to help him open it up! Thank you so much, Jen!!! He loves it all!!!

Resting comfortably


Well, he woke up fighting mad, and apparently kicked the crap out of a nurse! The comments were all about how they couldn't believe how strong he is! They had us come back, and that helped some, but he was still very agitated until they got the ativan in his iv. That kicked in quickly, and he is resting again. The swelling has started, but he opened his eyes a bit when we first came back. They apparently switched a wide strip from the front and back, but left a crossbar in the middle, so they didn't have to take the whole thing off. Now's when the fun really begins! Hopefully the ativan will keep him pretty comfortable for awhile. The catheter is out, but he still has 3 lines in for blood draws/fluids/etc. They are measuring pulse, blood pressure, oxygen level, and respiratory rate...all looks good there as well as with his most recent lab work.

All done!

Just saw the surgeons. Everything went great! He only needed 900cc's of his own blood back in. The breathing tube is out, and we'll get to see him in about 20 minutes. Yay!

Closing!

They're closing! We're moving to the PICU waiting room where we'll wait until they get him settled then talk to the surgeons and head back to see him. Yay!

Another update

Latest update is that all is still going well and they may finish earlier than expected. They think he'll be in the PICU around 11:30 and suggested we grab an early lunch when the cafeteria opens at 11. Since we just downed a chocolate snack, we'll probably just wait and take some shifts later. The time has been passing faster than expected, thank goodness!

Update

The surgeons started at 8:22, and all is going well. I forgot to mention that his blood counts were great today...14.6 for those who know what that means, so we're hopeful that the cell-saver will do the trick and no transfusion will be needed.

Drunk boy


And we're off! I told the anesthesiologist last night that the goofy juice tends to wind him up a bit, so we made sure to give him a strong dose. He was a very funny drunk, and was still sitting up in the bed when it was time for surgery. The anesthesiologist was shocked that he was still upright! He even remembered the neurosurgeon's name when he came by! I gave him a quick kiss, and the anesthesiologist picked him up and carried him to the O.R without a fuss. The nurse gave us her phone # to call the OR for updates...She asked that we wait 90 min for the first one since she's busy at the beginning. We're grabbing some much-needed breakfast and will head to the waiting room. Will post a pic or two then.

Thursday, September 4, 2008

More fun adventures





I think we may have officially worn him out finally. We headed back to Adventure Landing, and they had unlimited Laser Tag and Putt-Putt until 6pm, so he had a blast. We finished up with another go-cart ride and a few arcade games before heading to dinner. Had some great Mexican food, then Zack requested ice-cream again. We, of course, did not say no. The cone was a bit more than he could handle, so we wiped him off as best we could and put him immediately into the shower! At least the chocolate was better than the blue!

We talked to a mom whose daughter had the surgery at Medical City, and she is planning to come visit us tomorrow while Zack is in surgery. We also talked to the family having the surgery after Zack's. They are at the same hotel, but their little guy crashed early, so we'll wait until tomorrow to catch up with them. Waiting for anesthesia to call tonight with our final instructions, then we'll call it a night and TRY to get some sleep. Actually, just got that call, so goodnight from here. I'll update again once he's in the O.R.

Wild Child


We got a bit of a slow start today. Transformers came on TV...Dave and I both fell asleep, but Zack made it up until the end (after midnight, I'm guessing!) Must have been all the sugar from the ice cream. We had to go to the other Children's Hospital in Dallas today to meet with the neurosurgeon, so we headed out early and went to "Wild About Harry's", where they serve hotdogs and frozen custard. Only. Quite yummy!


The appt with the neurosurgeon went well. He used the word "shady" to describe what the plastic surgeon did during his second surgery. Nice. He agrees that they'll have to swap front and back of the skull to get some good bone up front. He also plans to rip out a bunch of the "crap" (cadaver bone paste) that was used last time. Sounds like a good plan to us to get rid of some of that foreign material that hasn't turned into bone yet. Hindsight is 20/20, but I wish we'd have sought the second opinions then.


He's bouncing off the walls now, so we're off to drive the go-karts again, and possibly play some putt-putt or laser tag again. We'll hopefully meet up with some cranio friends for dinner and an early night...we'll check out of our room and be at the hospital by 6am tomorrow.

Wednesday, September 3, 2008

I'm the luckiest kid in the whole world!


Wow, what a day. Draining for sure. It started out OK, with some general pre-op stuff. He was great for the initial height/weight/temp, etc. As soon as they mentioned bloodwork, he was done! They put some "magic cream" on his arm to numb it, then had us do the rest of the appts. while it kicked in. The tears were flowing, so we opened one of his gifts (thanks, Curt!) and that helped distract him for awhile. He kept crying and pitching a fit through photos, but was great while meeting with the craniofacial and neurosurgery coordinators and anthropologist. The child life specialist was awesome with him and walked him through some role-playing with a doll getting bloodwork. His turn was next, and the kicking and screaming started again. The "magic cream" did its job, and I don't think he was in any pain, but the fear had him very upset. We had half an hour to kill before we met with the craniofacial surgeon, so we got some ice cream and all was forgiven!

The surgeon appt was very informative. He does think the best course is the reconstruction vs. just the bone graft. The issue is in the way the original surgeon did the first two surgeries...there is no "good" bone left up front to reconstruct the brow the way he would like. So, what he'll have to day is swap the bone from the front to the back of the skull in order to get the best angle up front. He still expects it'll take about 5 hours on Friday and that we'll spend one night in PICU, one night on the regular floor, then back to the hotel Sunday. He expects his eyes will still be swollen shut at that point, but says they sleep and recover better outside of the hospital. (And he told Zack that the good thing about his eyes being swollen shut is that we'll give him whatever he wants!)

We finally left the hospital to get some lunch at the "Purple Cow." (a reco from our child-life specialist, Amy!) Then we were off to Adventure Landing for a little break. Zack and Dave played a little Laser Tag, then Zack went to drive the Go-Karts. He had an absolute blast! When he was done, he kept saying that he was the luckiest kid in the world! (Which of course made me happy and broke my heart all at the same time!) He crashed within 10 minutes of getting back to the hotel. I think I'll join him for a bit.

Tuesday, September 2, 2008

Windy city?

We're safe and sound in the Windy City, or whatever Dallas' nickname is. Tonight it's the windy city with the remnants of Gustav kicking up quite the breeze. Zack was wonderful on the flight! His mouth hasn't stopped running all day. New experiences with him can always go either way, so I held my breath until we were up in the air, but he did great. The most we had to do was remind him to use his inside voice! When we got off the plane, he said he wasn't even scared about surgery. "Because it's only Tuesday."

We made it to the hotel without much trouble...Dave and Zack are digging the 42" TV! We ventured out a bit to grab some Sonic for dinner...Zack's pick. Though I think he expected to find Mario & Sonic there. Pre-ops start at 9am, but we're less than a mile from the hospital, so we won't have to head out too early, thank goodness. It's been a long day!

All clear!


Just got the all clear from Zack's peditrician. We love her. She told him he talked like a 10-year-old...right after he told her that Lizzie said he couldn't play her DS on the plane and that "irritated" him. She made us promise to email her all our pictures/updates. We stopped by Servaati's for some cookies for our flight. The forecast for Dallas is looking a bit better...T-storms instead of T-storms plus wind. We'll take it. I considered trying to get on an earlier flight, but no seats, so we'll have to hedge our bets with the last flight of the night. Hopefully Zack won't see any lightning from the plane...that would sufficiently freak him out since he doesn't like thunderstorms anyway!

We'll update everyone tonight or tomorrow when we're settled. He's in great spirits today, which is helping to keep me upbeat even though I'm scared silly! Alex and Lizzie are all dropped off for the day, so Zack and I are hanging out...he's watching TV and I'm "working" while Nancy is cleaning the house. At least we'll come home to a nice clean house next week! Keep the prayers coming...we can feel them!

Monday, September 1, 2008

Quote of the day!

Zack: "Wait a minute! Am I having head surgery or eye surgery?"
Me: "Head surgery."
Zack: "OK. Cool."

God love him! Why head surgery sounded better than eye surgery, I'll never know. But, we'll take it!

BTW...here are pics of him from a family wedding last week for anyone who hasn't seen them yet.
Suitcases all packed...time to start filling up carry-ons with toys and games for all of us!

Here we go again...

Today is packing day. I haven't gotten very far. I hate packing! So far, I have suitcases filled for Alex and Lizzie, and their schedule e-mailed out to all the family members who will be taking care of them while we're gone. We've charged up all the cameras and located the cords so we can download all our pics. I've updated iTunes with lots of new songs and updated my iPod, though we still need to get Zack's updated with every Bon Jovi song ever recorded. We've got all the gifts that have arrived over the last couple weeks (thank you everyone!!!) I know those are going to come in handy when he gets grouchy on us.

Zack is doing pretty well, still. The only way we know it's bothering him is that he keeps asking us how many days until Tuesday. He said today that he was excited about the airplane ride, but not the surgery. That's one more thing than I'm excited about. At least it looks like "Gustav" ended up hitting earlier and less hard than first thought, so hopefully Dallas won't have too much wind and rain tomorrow!

We fly out of Dayton at 6:00 tomorrow, so it'll be a late night by the time we get settled in to the hotel. Pre-ops start at 9 am Wednesday. By lunchtime we should know whether we'll do the full reconstruction again or just the split-skull bone graft. It'll feel good to have that decision behind us.

I better get back to packing while the boys are napping...it hard to do much while they are both awake, and I'm hoping for an early night!

Thank you all for the love and prayers that have gotten us through this summer of anticipation. We'll keep you all posted once we get settled in Dallas.