Post-Op Day #2

Today Peyton seems to be doing pretty good. He is hurting quite a bit, especially when he tries to cough. They stopped his milrinone yesterday around 6:00PM so he can be moved to the floor as long as he continues to do well. He is still on 1 liter of oxygen and sating around 85. He doesn't want to eat and he will only drink a little bit of PediaSure. I think his throat is still really sore and he doesn't want to make it worse.

After we came back from dinner last night, we decided that it would help Peyton if we got him out of bed and took him on a walk. He walked to a window and looked at the snow and then around the nurses' desk. He almost made it back to his room when he started to be in a lot of pain. So, I attempted to pick him up and he screamed even more. Another nurse had to come and pick him up and carry him to his bed. Once he was in his bed, he calmed down and fell promptly to sleep. We stayed for a little while to make sure he was okay.

Also, Peyton was asking for Mason last night. He said he wanted to see him. When I asked him if he wanted to call him and talk to him, he said no. Hopefully Mason will be able to see him soon!

He had the same nurse last night so we decided that we would both go back to the Ronald McDonald House to sleep. I don't even think he knew that we had left. And when we got back here this morning, he was still sleeping. (This is how he was sleeping when we came in this morning.)



Right now Peyton is watching Mickey Mouse Clubhouse with Daddy and we are waiting for Bingo to start. We gave him a little bit of morphine since the tylenol just isn't quite cutting it. Morphine makes him jerk every so often and the jerks tend to wake him up if he's been sleeping so we are trying to limit it a little bit more. But if he's gonna be in that much pain, then I would rather deal with the few jerks versus the crying and uncomfortableness (is that a word?!?). We are not pulling a chest tube as of right now which is fine with me. I'd rather have them wait and be safe then having complications.



Here are the pictures of the Ronald McDonald House. Peyton's cousins in Phoenix are collecting soda pop tops through their school to raise money for the Ronald McDonald House so we took pictures so they can see where their money is going.

Our Room






Entry way into the front of the house.



Living Room



Stairs



TV Room



Dining Room




Back of the house



Front of the house

Video of Peyton Blowing His Pinwheel

*Update* on Post-Op Day #1

So, in talking with Peyton's nurse, I realized that I got some of his lines mixed up so I updated that. Also, they pulled his RA line about 1:00PM. That one really hurt since they had to cut the sutures that were holding the wires in place. He was so brave and once they were out, we were able to really, truly hold him.



LUNCH TIME (that he didn't eat....just drank his chocolate milk)



Crazy Grandma Randee reading a 3D book.



Mommy holding Peyton after his RA line came out.



Sleeping with Grandma Randee.

Post-Op Day #1

Sorry for not posting again last night. We came and saw Peyton and everything was going so well. And I was gonna post after we got back to the Ronald McDonald House but it was snowing and we left the laptop in the van so I decided that it would have to wait until today. So, a recap of yesterday after surgery....

After we talked with the surgeon, they moved Peyton to the CICU and we went to check into the Ronald McDonald House. They put us into a room at House 3 which is for adults and no children (except infants). We are on the third floor and they only have stairs so we are definitely getting a work out. Our room is really nice. It has a queen bed and a little pull out bed, a fireplace (that we can't use), and TV, and a big bathroom. They also have a communal kitchen, laundry room, dining room, and living room with TV. The house used to be a bed and breakfast and it's one of the older homes in SLC. Once I take pictures, I'll have to post those on the blog.

So after we got checked in, we went back to the CICU to check up on Peyton. He was intubated (but breathing a few breaths on his own), had an RA line (coming out of his heart), an ART line (in his groin), an IJ line (in his neck), 3 chest tubes, and 2 IV's (one in his hand and one in his foot).



They were giving him his own blood, milrinone (helps heart squeeze), tranexamic acid (helps to clot blood after the heparin during surgery), and nipride (lowers blood pressure). His sats were right around 90-91.



And he was pink.....he looked so good! He was starting to stir a little bit and so we started to talk to him.



Because he was still intubated we couldn't hear anything. He was coughing and then he would start to cry. You could see little tears coming from his eyes but couldn't actually hear him crying. It was really sad to watch. And then it looked as if he was saying "Mommy".



So, I sat by him and held his hand and comforted him. He was opening his eyes a little bit whenever we would talk to him. They slowly started to wean the vent. We asked them to put the vent on spontaneous mode while they did shift change and we ate dinner. And that we would be back in a little bit and to wait until then to wean the vent.



We decided to go to Wingers for dinner since I will be eating cafeteria food for awhile. We had ordered our food and were just sitting there and watching the Jazz game when the power went out. And then it came back on and then it went out again. It was quite an experience! And then we had to clean lots of snow off the car when we came back out only an hour later! We got so much snow up here...there was probably a good 6 inches.




Anywho, when we came back around 8:30PM, they had just barely pulled the breathing tube out. He wasn't real happy but he did okay. We sat with him for about an hour until he started to go back to sleep. Then we decided that we all needed a good night's sleep so we went back to the Ronald McDonald House. It took quite a while since the roads were really bad. When we got to the driveway, we didn't get a running start and we got stuck. Montana had to get out and push while I backed out. And then I gunned it and we got into our parking spot. And then this morning, we had a hard time getting out of the parking lot. Oh well, the joys of snow.

I was really glad that we went to the house last night to sleep. I felt a headache coming on and knew that I really needed sleep. After being up since 4:30AM yesterday, I knew I would be of no help to Peyton if I didn't sleep....and take a shower!

We came back to the hospital after shift change this morning, around 8AM. Peyton had just fallen to sleep. He threw up a little bit so he has been given Zofran. He did really well through the night and is during amazingly well without the ventilator.



I'm just amazed at how coherent he is and how well he is doing. He looks so good and only really crys when he's hurting. He is on morphine and tylenol and we will start loritab when he eats a little bit more. He has been drinking PediaSure (surprise, surprise :) ) and he just started to drink a strawberry milkshake. He only has a couple of drips left and two lines to pull before he can be moved to the floor! Dr. Etheridge came in this morning and said he is doing really well. And that it is possible that he will be moved to the floor tomorrow. He is watching PBSKids and just relaxing. He also blew some bubbles and blew a pinwheel! YAY!!!



The plan for today is to take it easy and just watch him. They are planning on pulling the ART line and the RA line in the early afternoon. We are so pleased with the progress that he is making. We will continue to keep updated but it might only be once a day since I'm just lovin on him while I can.



P.S. They just pulled out his IJ Line while I've been uploading pictures as well as his ART line. He cried cause it hurt but he's doing okay now!

Update #6 - HE'S DONE

PEYTON IS DONE!!!! After a long 8 hours, we are so excited that the Fontan is complete. The surgeon just talked to us and said that everything went well considering his anatomy. He ended up doing an Intra Cardiac Fontan which basically means he went through the heart, not around it. He didn't feel confident in going around so he didn't. He didn't want to chance squishing the pulmonary veins on the outside of the heart. He used a piece of gortex and his heart to build the tube and he doesn't anticipate any leaking from it. There is still a chance that a pacemaker will be put in but not until Peyton shows signs of truly needing one. All of his pressures are right were they want them to be. There is a possibility that they will extubate him tonight but hopefully within 24 hours. If Peyton continues to look really good, he will probably be moved to the floor in about 3 days and then he will be there for a little while longer. It is anticipated that we will be here for 7-10 days. Thanks for all the prayers on our behalf. We are so grateful for everybody and for a great surgeon!

This is a picture of the piece of gortex that they put into Peyton. (It is pretty darn close to the same size too!)

Update #5

Peyton is off the by-pass machine! His echo looked awesome, his heart is beating on its own and his valves are working better than they were before surgery. They were getting ready to pull out the lines from the by-pass machine and then they will put in the art lines, the chest tubes, make sure there's no bleeding, and keep him intubated. The surgeon should be out in about 1 1/2 hours to explain everything they did. All we really know is that Peyton is doing well and they ended up going through his heart instead of around it. And they will keep him intubated at this point because of the problems he's had in the past trying to come off of it. After we talk with the surgeon then we will update with, hopefully, more details.

Update #4

Just got an update....they are almost done with the procedure and then they will do the transesophageal echocardiogram (echo) and take him off by-pass. We are probably 2-3 hours out before he will be completely done. He has been stable the whole time and doing well....considering. Now to watch TV and waste more time!

Update #3

He's on bypass! We've been waiting for about 4 1/2 hours and he is finally on bypass so they are working on his heart. They got through all the scar tissue. Now we just wait and hopefully have a more detailed update next time!

Update #2

Nothing has changed. They are still trying to get through all the scar tissue. The surgeon takes things really slowly so that there is less bleeding after surgery. Hopefully in an hour we will be underway on the actual procedure!

Update #1

The nurse practitioner just came in for our first update. Peyton is stable and doing well. They are still trying to get through all the scar tissue and then they can really start his surgery. They should update us again in a little while. So, for now, it's off to eat my muffin and drink my hot chocolate....courtesy of the Hospitality Cart (I love that thing!). And then we will start the game playing...Phase 10 here we come!

We're Here!!!

Well, we are officially checked into the "hotel on the hill" and Peyton is back in the OR. We have eaten breakfast (you should be proud of me!) and now we are waiting in the surgery waiting area. Peyton did really good and only cried for a split second as they wheeled him away in the wagon. He was such a good sport....of course, the versed helped calm him down quite a bit. We met the surgeon and the anesthesiologist. The anesthesiologist has worked with Peyton before which gives us lots of comfort. This is the first time we have met the surgeon and he seemed to know everything about Peyton. We feel really comfortable with him, his knowledge, and his skills. It always scares me when they talk about the risks but they have to and I understand that. And there were no surprises....I knew about everything that the surgeon told us! So, for now, enjoy the pictures of his pre-op time and I'll update when we get updated!

Family Pictures 2010

When we were in Phoenix for Christmas, a friend of Montana's (Amanda Marie Photography) took family pictures for us! We were so excited and thrilled with how they turned out. She did an amazing job! If you live in that area, you should totally use her. I can send you her information if you are interested. Here are some of our favorites...

Sedated MRI

Peyton had a sedated MRI today at Primary's. I'm just sitting here waiting for him to wake up so that we can go home! He did so well for everything before we sedated him. He had to squish Dora and backpack while he got weighed and than he stood to get his height. He did well with his blood pressure and his sats. The nurse practitioner came in to check his heart and he did NOT want her to listen to him. She listened to me first and then Peyton let her listen to him. Then we had a Child Life Specialist come in and give him a doll. She walked Peyton through the IV process on his doll so that he wouldn't freak out as much when he actually got his. It worked really well! He still cried but not for long. He got to play with dinosaurs and he even got to pick out a prize....and they were pretty good prizes. Of course, he picked the annoying toy but he's happy with it. He picked a Sing-a-ma-jig.....I saw them all the time at WalMart before Christmas! We then walked him to the MRI room and I held him on my lap while they put the sedation in his IV. Within a couple of minutes, his head was falling all over the place and he dropped his prize. The nurse took him from me and put him in the MRI room and hooked him up to the monitors. Then she sent me on my way. I went and got lunch since I was starving! Peyton wasn't allowed to eat anything so I didn't dare eat in front of him. I went back to the recovery area when I finished and about 5 minutes later, they brought Peyton in! I am now waiting for the sedation to wear off so he will wake up. (And his sats have been at 88....amazing!) The nurses have LOVED him and his cute personality. I love this little boy so much and he has done so well with everything we have put him through. I only put him through it because I know it will help. He is a trooper and we are so grateful to have him in our family. He definitely lights up a room and my heart. Here's some pictures of our day...

CHD Awareness

Since this week is Congenital Heart Defect Awareness Week, I've decided to upload the video that we made in December 2008 of Peyton's first little while. We are so grateful for this sweet, cute little miracle that we get to call our own! I'm a little nervous going into surgery again but I know that everything will work out the way it is supposed to. Also, he is going in for an MRI before surgery to get a good 3D look at his heart. He also had to wear a Holter Device for 24 hours which he did awesome with. Hopefully this will be the last of the pre-op stuff, besides lab work. Enjoy the video!