Brian's Surgery

Brian's surgery went very well today. We were thrilled with how great he did waking up from general anesthesia. Typically he wakes up fighting mad trying to pull of any lines that may be connected to him. Today he was crying and upset about his mouth being numb but he did really well after we repeatedly explained that would go away. Brian HATED having to wear the "butterfly and sticker" home the night before surgery. Mommy asked him if she could take a picture so that we could look back one day and say "remember when..." Brian didn't want anyone to look at his port but when Mommy took the picture he was all smiles. He's such a sweet boy. Even as he went in for surgery this morning he was as nervous as could be, but he flashed that smile to anyone that looked his way.

 The reason Brian was accessed the day before surgery was because his wonderful nurse wouldn't be at work at 5:30 AM when we had to arrive for surgery. The Hem/Onc clinic doesn't open until 8. We do not let anyone mess with Brian if they have no idea what they are doing. We've learned from experience that once we leave the fifth floor not too many people are familiar with a pediatric Bardport implanted port. Last year one of Brian's first surgeries left us dumbfounded as the nurse taking care of Brian in recovery asked US what to do and when to administer the Heparin. We looked at each other with total shock in our eyes thinking, "this lady is going to take care of our baby?!" 

  We have just enough experience under our belt that we know that we have options and we don't have to just sit and do what we are told. When it comes to her baby, Mommy will be sure he gets the best care and is not too shy to say to a nurse, "You're not doing that...let's get someone else in here." Mommy knows that we are Brian's best advocates and the only people that know EVERYTHING that Brian has had done or is about to go through. Sometimes it can be so frustrating to see just how little the right hand knows what the left hand is doing. You would think there would be a better internal communication system in the hospital. Anyway, today's experience was not that bad. Brian's nurse in recovery admitted that she didn't know about children's ports and needed to ask someone what to do.She called Brian's nurse on the Hem/Onc floor and got the information (by this time the clinic was open). When she attempted to deaccess the port she forgot to clamp the line and blood came pouring out. Mommy freaked out, as that had never happened before, and was ready to say STOP. The recovery nurse left the room to get more Heparin. During this time Mommy calmed down and Daddy explained why that happened. After a second conversation with Brian's Hem/Onc nurse the recovery nurse attempted to deaccess Brian's port again and did well. It was stressful. That would be the theme of our life right now...stressful.  

B at home last night.

At 5:30 AM we headed to the hospital. Brian's surgery was the first on the books at 7. We passed the time playing with Wall E toys that Mrs. Zimmerman gave Brian. Thank you to the Z family. Brian LOVED LOVED LOVED his gift from you guys. He was upset that Mommy forgot to grab the Wall E comforter to bring with us to the hospital. As soon as we got home he snuggled up with Mommy and all his Wall E toys on the couch under his Wall E comforter. Then when he took a nap on his bed he slept with his Wall E comforter. After his naps the Wall E comforter became a fort with the Chick Fil A box that Bigdaddy sent over with Grandma Hayes.
  Grandma Hayes watched the other three kiddos today and even successfully navigated her way to Pace and back home. She took the kids to their Classical Conversations Christmas party. They were excited that they did not miss out on their party and thrilled to show off Grandma Hayes. They had tons of fun with her today and even convinced her to stop by McDonald's on the way home for some apple dippers. Thank you Grandma Hayes for coming over and taking a day off of work. It was a blessing to us!

Brian's beloved Wall E comforter from the Zimmerman's.

. When we got the mail today Brian received a video from the Tinklenbergs. He and William were excited to watch the Veggie Tales Christmas video while the girls were at ballet with Daddy this afternoon. Thank you to the Tinklenberg family. That was very thoughtful and we have one little four year old that was thrilled to open his own mail.

There are so many wonderful people that have served us, encouraged us, helped us and prayed for us. We appreciate EVERYONE!  A special thank you to the Shanagahan's for dropping by the other day to bring us dinner. Of course they know how tough things have been as Kylee is our wonderful babysitter. She is in our home and has seen Miss Ansley "loose it". Kylee took a verbal lashing from Ansley last week. Kylee is so wonderful to know that Ansley is typically a sweet girl, but she is definitely going through a lot right now. We appreciate how patient Kylee is with our kids.

We REALLY appreciate our CC group. Those wonderful group of ladies have rallied around us and made sure we have a meal every week. It has been such a life saver. Thanks to Joyelle who coordinated that and stays on top of making sure everything is organized well.

The women's ministry at McIlwain gave our kiddos a wonderful gift bag of goodies. All four ripped through the bag like it was Christmas. I am not sure what the favorite gift was as they have enjoyed it all already. Literally, they have played with the play dough; they put the pill things in water to watch them grow into sponge shapes; they have used their snow man cups; and danced in the dark with their glow bracelets. Thank you to everyone that donated something for our little ones. We really appreciate it. We are excited about the pizza gift card too. Mommy wants to say a special thank you to Mrs. Yates who thought to freeze the Christmas Cookies until later when Brian can enjoy them too. It will be a couple of weeks before he can eat a cookie. He now has NO molars in his mouth. He has six teeth across the top and six teeth across the bottom.

Please continue to pray for our family. It is such an encouragement to know that we have a huge army of people in the body of Christ supporting us and coming along side of us as we take this journey.

I am adding this picture later then when the rest of this post was written. When I was getting him ready for bed I noticed his skin was really irritated by the adhesive from the dressing over his port. He has always had sensitive skin, but he really reacted to the bandage this time. I guess because he wore it for 18 hours.