Post Op Day 2 (3/31/11)

4:00 Just got back to the room. Colby did really well. No surprises just fluid.... He has already drained a bunch and his SATs have already begun to rise back into the mid to upper 80s. Hopefully tonight will be a more peaceful/ restful night for "everyone" especially daddy? Colby gets meds to help him rest mommy and daddy need meds.....

1:30 Colby went back for the quick procedure of inserting a drain tube into his right chest cavity. They are going to sedate him enough to keep him comfortable but not enough to where he has to go back on the ventilator....

10:45 We knew it would happen eventually..... Setback #1 They told us yesterday that Colby had some pleural effusion (fluid on his right lung). They attempted to increase his diuretic to see if they could drain the fluid but unfortunately the effusion continues to increase. His surgeon just came in and told us that she is planning to insert a pig tail (an additional chest tube) on the right side of his chest cavity. We will update once he gets back into a room.....

Brody finally got to see his little brother this morning.... unfortunately his little brother did not feel much like talking or playing.... hopefully he ill feel better once they get the fluid off his chest.....

Post Fontan Day 1 (3/30/11)

This picture pretty much says it all for the day Colby has had...... I'm not sure where he learned to sleep like this but it appears to be working for him at the time.

This picture was made tonight as he was being moved OUT of the ICU and into a regular room on the 6th floor 24 hours after surgery. What an amazing day provided by an AMAZING GOD. So many answered prayers over the past couple of weeks for this surgery.

Finally a good nap after they removed his arterial line and some other tubes, hoses, and cords this afternoon. Once they got everything cleaned up they told us they had a surprise......

Pretty awesome to hold him in my lap less than 24 hrs after surgery!!!!! I think I was watching a documentary on TV or listening to Becca?

Colby was very irritated w/ the nasal cannula so he requested his own Oxygen supplement. Let me do it......

Middle of the day today..... I wonder if he is tired or doing yoga meditation? Funny thing is we have a very similar picture of him sleeping in this same position after his last surgery....

If they don't see me maybe they will leave me alone. He was excited to finally get the remote to the TV and DVD player.... unfortunately, the remote did not work which did not make him happy....

Resting peacefully this morning.... He is pretty cute even with a big scar on his chest (chicks will dig that when he gets older). Pretty amazing to think he was heading into the OR 24 hrs earlier....

This picture is a few minutes after they took him off the ventilator around 2:00 this morning. This is the moment he began to formulate all of the words he had been saving since he went into surgery. Once his throat had some time to rest he reminded us how many words he has in his vocabulary.

There are so many things we could talk about today b/c this day has been filled with blessings and answered prayers. We can never thank all of you enough for all of the kind words, prayers, and other kind gestures. Colby will some day realize how loved he is and how he has been surrounded throughout this entire adventure by the angels in heaven and by the loving arms of so many family and friends. We are truly a blessed and grateful family. We have heard a number of people say over the past couple of days "we could not do what you guys are doing". I can assure you that Becca and I never fathomed we would be where we are today via the path we have traveled over the past 3 years but we have made it to this point through the grace of God and the outpouring love of many friends and family members. No doubt we wish Colby's heart were "whole" but I would not trade this experience for anything. The ride has been fast and furious but the result has been Colby. Thank you for celebrating in this journey with us and giving us a shoulder to lean on.

Post-op Pictures

Fontan Operation

• 5:00 PM: We got to see Colby. He is doing pretty good. They have him sedated b/c he is not happy about the vent tube. We hope to get that out tonight so he can start talking again in the AM. We may soon regret that desire to hear him talk but we are ready to hear him say "me hit play hit pause go potty"

• 1:50 PM: Dr. Christian just came out and told us all went well with the repair and closing him up. They are moving him up to the PICU now, and we should be able to see him as soon as they get him stable (about another hour or two). Thank you all for the prayers. We are so thankful to God for Colby's strength, our supportive friends and family, and the peace that God has given us throughout the day. We will update later once we've seen him.

• 1:00 PM: Just got a call from OR... they just took Colby off bypass!!!! he is still doing good. They hope to have him closed between 2:30 and 3:00!!!! Praise God for success this far.... thank you for all of the prayers and words of encouragement. We will update soon.

• 12:00 PM: everything is still on track... no changes. still on bypass. hope to have another update around 1:30. Brody came to the hospital to have lunch w/ us. It was a great distraction to see his smile. He asked if Colby was coming out to see him...

• 10:30 AM: Dr. Christian just got through all of the scar tissue from his first incision and reached the heart. They are about to put him on bypass.

• 9:00 AM: OR called to say that Colby went to sleep peacefully. They had no problems getting his lines started this time (thank Goodness!). Dr. Christian was about to begin the incision.

• Pre-Op Holding Room: Colby was in such a good mood this morning. I guess that should not surprise us, though...he's always in a good mood! He was entertaining everyone that came into our holding room with his books, Toy Story figures, and lots of movie quotes. I feel like Jason and I should be the ones to comfort and calm him, but really, Colby is the one who calms us down. It is hard not be happy around him and his sweet, contagious smile! The anesthesiologist, Dr. Hughes, was fantastic! It turns out that he knows a lot about Toy Story, which made Colby immediately love him. Colby showed him all of his characters, and they played around with Woody, Buzz, and Rex. Then, at 8:00, he asked Colby if he wanted to take Rex and Buzz to see a balloon. Colby said, "O-Tay," and off they went to the OR with no tears or hesitance from Colby. It was like he was going to play with a new best friend. Jason and I were left in the holding room to start our long day of waiting, worrying, and praying.

Pre-Op Appointment for Fontan

Colby's Pre-Op appointment on Monday went so well!!! We are amazed by Colby's spirit and strength every day. He started the appointment with going pee-pee in the potty for the nurse (so she could get a urine sample). I still can't believe he potty trained himself...just like Brody did! God knew I wouldn't have much patience with potty training, so he blessed me with boys that could do it themselves! Nurse Tina then did his EKG. As she put on the stickers, he counted each one. Then, as she attached the cords to each sticker, he told her what color the cords were. Our smart boy was trying to impress his nurse!! When she got a good EKG reading, Jason tried to take off the stickers for him, but Colby said, "no, me!" So, Colby pulled all 13 stickers off by himself. The worst part of the visit came next...drawing blood for labs. To our surprise, he did not even cry, though! He made a funny face when the needle went in, but then he just sat there and watched the blood fill the tubes. The nurse loved him! He even conned her into giving him some extra bandaids for his "boo-boo." When did our baby get so big????? Since Colby is older now, a child life specialist came to speak with him about his surgery and what he should expect. She had a little doll and asked Colby to show her where the doll's heart was and where his boo-boo would be. I never dreamed Colby would know, but he did! He knew right where to draw the heart and his boo-boo. He had a lot of fun using the markers to draw a face on his doll, put bandaids on his doll, listen to his doll's heart, check his doll's blood pressure, and even give his doll some medicine. I love that the hospital offers this education for kids. This is a tough thing for kid's to go through, and I'm glad that we have support right here for all of us. The child life specialist even offered to talk with Brody if he wanted to visit Colby while he is still in the PICU...to help him understand what all the machines and tubes are for so he won't be scared. Jason and I really don't want him to visit the PICU, but if he asks to see his little brother, we will do what we have to do!

Brody's 2nd Soccer Game

Dinner at Kabuto

On Saturday, Jason treated us all to dinner at Kabuto, which is a Japanese Hibachi style restaurant. Both boys absolutely loved it!! The chef entertained them with flying utensils, a big fire to which Colby said, "No touch...hot," a Spongebob made out of rice, and a volcano at the end made of onions. The boys thought it was hilarious when the chef threw a piece of shrimp at them and told them to catch it in their mouths. Jason and I were glad that they didn't catch it, considering we are unsure if they are allergic to shrimp (Jason is allergic). We then finished the night with ice cream from Maggie Moo's with our good friends, the Rowells and the Smiths. This is just another happy memory for us to have before starting our extended hospital stay.

Brody loved learning how to use his chopsticks. He can actually use them better than I can!

Colby decided to just use one stick and stab the food. I guess this works too!

"Bike Race"

Ever since taking off his training wheels, Brody has been very enthusiastic about riding his bike everywhere! Friday was a beautiful day, so we decided to go on a bike ride, or as Brody calls it, "a bike race." The original plan was to ride over to the nearest soccer fields and play a little soccer. We can get to these soccer fields without ever crossing the main road. When we got there, though, Brody decided that we needed to go to the "real" soccer fields where he plays his games. These are of course much farther and require us to cross the main road. I was having so much fun riding my bike with him and Colby was enjoying his ride in the trailer behind my bike, so we did it! We got there with no problem and spent some time playing soccer on "Brody's field." Brody even showed Colby some moves and helped him score a couple of goals, which Colby loved!

After the soccer practice, Brody wanted to ride even farther. I told him we would keep riding, but he had to tell me if he got too tired. Before I knew it, we had followed the trail all the way to the Library! This is about a 3 mile ride from our house. The boys got out and had a snack and ran around for a few minutes before we started the long ride back. We made it the 3 miles home with no problems! Brody only complained about his legs being tired one time. I am so impressed with him! He has only had his training wheels off for a short time, and now he is riding his bike 6 miles at a time!

The boys had so much fun Friday that we did it again on Tuesday. We rode to the Library and even went inside to check out some books this time. Brody really wanted to get some Cat in the Hat books like he has been reading at school. Then, we rode a little farther and had lunch at Which Wich before heading back home. I absolutely love these days! It is so much fun just spending time with my boys outside on a beautiful, sunshine day. These are the days I will treasure forever!

Colby at 2 1/2

I know most people think the 2's are terrible (I admit that I even have days where I want to run and hide), but I think this has to be one of my favorite ages!!! It is so fun watching Colby grow and learn each day. It seems like he does something every single day where I say, "Wow, I never want to forget that!" Some of things he says or does are funny and some are frustrating, but they all end up making me smile when I think back on them. He really is a funny kid with a great personality! Here are some things that I do not want to forget:

• At the end of January, Colby discovered that he could climb out of his bed by himself (this is amazing in itself considering how tall his bed is). During naps one day, Jason and I heard a door close and then little footsteps. We at first thought it was Brody going potty, but then we heard Colby's little giggle. Jason went up and put him back in the bed and told him he was not allowed to get up by himself. He stayed in his bed for about 10 more minutes and then we heard some noises again. This time I went up and found Colby standing on his stool in the bathroom with no pants on brushing his hair! I mean, seriously?!?! That was one of those moments where I wanted to discipline him but I couldn't help but laugh!


• We were upstairs playing in the bonus room when Colby put his head on the floor and flipped over. He looked up at us with a big smile on his face! He was so proud that he had done a forward roll all by himself. For the next few days, he did these everywhere...including his bed!




• He can flip through our movie case and say the title of every single movie. I have yet to figure out how he does this, considering most of the movies don't have pictures on the discs. He showed this "skill" off to our neighbors the other day, and they were joking that he can already read! Ha!


• The other day, Poppy brought over Zoe so the boys could play with her. Colby chased her the whole time she was here saying, "doggy, doggy." He laughed so hard when she licked his face. He looked at me and said, "more...then stuck his tongue out and licked like a dog. Too funny! He also had fun sticking his tongue out and panting like she was panting.
  
  

Colby talks a lot! A couple of months ago, I was a little concerned that he wasn't putting words together to form phrases / sentences, but he has definitely shown me that he can do that now. Here are a few things that he says that are just so cute:

• "Olba"...this is how he says his name. This is funny to me, because at 2, Brody called himself Broda. I guess the "y" takes longer for our boys to say.


• "holsha"...hold me. This is also funny, because Brody used to say this exact word when he wanted to be held. I'm really not sure how they both ended up saying it this way, but I love it! Brody will still say it like this every once in a while when he wants some mommy love!!


• "No, me!" We hear this a lot! He is starting to be very independent and wants to do everything by himself.


• "Me turn"...my turn


• "Hit pay, hit pause"...play and pause are his favorite words right now! He loves watching movies and using the "ro-mote" (remote) to hit play and pause.


• "Potty"...he is potty trained now (during awake times/ he still wears a diaper at nap and bedtime). He has learned very quickly how to use this word to his advantage. If he says, "potty," he sees me jump to attention quickly! He also likes to say this when he wants to hit pause on the remote. His new trick is saying "potty," hitting pause, and then saying "no potty. dittting (kidding)." Frustrating at times, but so stinking cute!


• "Over". He yells this every single time a show on TV or a movie he is watching goes off. He likes to let us all know that it is over.


• "pitty pease"...pretty please. This one gets me every time! He says it in the cutest little voice, and it is honestly hard to say no sometimes.


• "one, two, pee, poooor, pive"...one, two, three, four, five. When he is counting to five, he normally forgets the number four. He gets so excited, he skips straight to "pive."


• When we pass the "duck park," he will say "duck, pack pack"...duck, quack quack


• "haaa, haaa, haaa" This is from the movie Barnyard. The naughty boy in the movie always says it in a very obnoxious voice. Colby calls it the "sas part" (sassy part).


• "sare"...scared. He says this with his hand over his heart when he is scared.


• "hide, see"...hide and seek. He loves to hide and have you find him.


• "friends" He asks for his friends every day when he wakes up from his nap. His friends are all of the kids in the neighborhood that play outside. "Woooeees" (Lucy), "Ta tee" (Katy), Jack, "Memmi" (Remi), Max, Ben, Sam. I think it is so cute that he considers all of these big kids his friends!


• "sarrrry"...sorry. He normally says this any time he spills something, bumps into somebody, or does something that he knows he wasn't supposed to do. A couple of weeks ago, we were in a restaurant and he spilled his whole cup of Sprite in my purse. He just looked at me and said, "sarrrry." It is kind of hard to be upset when you hear that!!


• "Ah-Ah, tanket"...his monkey and his blanket


• "huh? huh? what say?"...what did you say? He is notorious for doing this! I'm not sure if he really doesn't hear what we say, or if he just likes to say this phrase.


• "what world?"...what in the world? He started saying this after hearing me or Jason say it to to something silly Brody had done. It really is funny hearing him say this!


• "bum? one piece?"...gum. He always asks for gum. He started the one piece thing when he realized I kept saying no. I guess it is his way of negotiating. When I say no to the one piece, he will say "one bitty bitty?" and pinch his fingers together and squint his eyes, which means just one little bitty piece. How do you turn that down?

I could probably list tons of little things that he says or does that make me smile. I try to focus on these when I am feeling down about his heart and upcoming surgery, which I guess is why I finally decided to type up this post. This week has been really hard on me thinking about the surgery, the anesthesia, the possible complications from the anesthesia and surgery, the hospital stay, the recovery, being away from Brody, etc. All of the what-ifs just drive me crazy. The emotions are overwhelming to say the least, but it is definitely harder to be sad when I see Colby's sweet smile or think about all of the happiness he brings us. These are the things I must focus on to get through the tough times ahead!

Nashville Zoo with the Clinkscales

Thursday was a beautiful day, so we decided to meet the Clinkscales at the Zoo. Unfortunately, everyone else in Middle Tennessee had the same idea! It was the most crowded that I have ever seen it. We should have known it would be packed considering it was Spring Break week and the first nice day in a couple of weeks. Crowd or no crowd, though, we had a great time. It was just so nice to be enjoying some outside time.

checking out the Meerkats

Cain was very intrigued with Colby's Toy Story shirt

Our boys always love the inside part of the zoo...the fish, iguanas, snakes, spiders. Brody wanted to study each one!

We are bad influences on Cain! This was his first taste of Fun Dip, or as Colby calls it, "sugar."

Colby finishing his "sugar" off like a pro

Brody's finger turned green after using it to eat his fun dip. He thought it was cool that he looked like the "Hulk."

Posing in front of the giraffes

As we were leaving, I looked back and saw my two sweet boys holding hands. I hope they always love each other this much!!