Friday, February 25, 2011

Peyton is home!

Peyton got to come home this morning! We are so grateful that everything went so well. Peyton is still in pain, as is to be expected and her recovery road will be long, but thankfully the surgery accomplished what was needed. It was evident that prayers were being answered. I asked that you pray for Peyton before surgery as she goes into the operating room. I am glad to tell you, that she was so brave and went in without any sedatives and without crying at all. Thanks for praying specifically for that. She was such a big girl.

It was actually evident from the beginning that God was in complete control of this situation. At the beginning when Peyton was first diagnosed, the local doctor's listened to Karen about how different Peyton's anatomy is. The doctor's took what she said to heart and referred us to an ear specialist who they felt confident could handle this situation. It would have been easy for any doctor to take this on, even with lack of experience, but these guys didn't do that. They were honest about their lack of experience and pushed this specialist to the forefront.

Once the doctor's got inside of Peyton's ears, they found that the problem was a lot larger and more significant than first thought. The surgeon had to make some difficult decisions during surgery in order to move forward and remove all of the cyst and the cells. He said after the surgery, that this was the largest one he had ever seen and that it was very aggressive. We are not quite sure how long this has been going on inside of her, but all that we have read states that more aggressive chloesteatoma's can lead to very serious issues like having the brain abscess. This process moved so fast to get Peyton into surgery and we didn't even realize how severe it was. Thank you God for taking care of Peyton and getting her the attention she needed when she needed it.

We often wonder why so many things have to happen to one person, especially a five year old. It is easy for us to get caught up in ourselves in times like this and forget about God and his plan. Although we don't understand all that happens, Karen and I can say that in all of Peyton's operations and health issues, we have always seen God's hand in the midst of it. We believe that God loves Peyton more than we could ever love her and that he doesn't make mistakes. All that has happened to Peyton didn't sneak up on God and catch him off guard. We are learning more and more that we must trust God's promises and his plan for our lives and for our children's lives. Peyton has been through a lot and there have been some scary moments in her young five years of life, but God has brought her through all of them. We can only hope that he will use all of these experiences in her life to bring more glory to Himself.

We are thankful to God to have Peyton home and to be home with the rest of our kids. All of the kids were glad to see Peyton come home today and she was glad to be home with them. Thanks again for keeping our family in your thoughts and prayers. We are very blessed to have such caring friends and family. Even those that we don't even know!

Wednesday, February 23, 2011

Peyton's Ear Surgery!

As most of you know, Peyton is going in for another surgery in the morning. Her surgery is scheduled for 9:30am. For those who have been asking what this is all about, here is a brief description. About a month after we got back from Charleston at the end of last year, Peyton had an ear doctor appt and they found some problems. The first thing they saw was a hole in her eardrum and they prepared us for a possible procedure to skin graph it. The doctor wanted another doctor in his practice to take a look at it, so we went back in and that doctor found something more serious. They found a skin cyst that had overtaken her middle eardrum. The guys here locally didn't feel comfortable doing the surgery required to remove it, so they called in a specialist from Raleigh, NC. He came in and confirmed the cyst findings.

The doctor explained to us that this cyst was like cancer in the sense that when he goes into her ear, he has to remove it all, along with the skin cells or it will grow back. Tomorrow's surgery will involve the doctor going in behind Peyton's ear and removing the skin cyst and cells. He also will do some sort of temp fix for her middle ear drum (since the skin cyst has defected her middle eardrum). The second surgery in 6 months will involve the doctor rebuilding her middle eardrum so that she can regain full hearing and to follow up to see if any more skin cells have developed. For about the last 4 months, Peyton has really struggled to hear and that hearing loss continues to get worse.

This surgery like all surgeries has risks. Some of the risks are facial paralysis due to the surgery taking place all around main nerves that control muscles in the face. Also, they will be working in close proximity to the back bottom part of her brain. The doctor feels very confident about his ability to remove the cyst and fix the problem. The surgery itself should last about 1.5 to 2 hours. They are planning on keeping Peyton in the hospital for 24 hours due to her history. Peyton will have a very tough recovery that will last 8 weeks. During this recovery time, she will be very limited as to what she can do.

Karen and I would ask that you guys pray first and foremost for Peyton as she goes in for surgery. She is nervous and anxious. She really begins to struggle when the doctors take her from us and into the operating room. They give her a sedative to help her relax, but she still gets really upset. Also, please pray for the surgery itself and that it is a success. Karen and I can't help but be reminded of our last episode in Charleston. We know that doctors can and do make mistakes and we are trying really hard to not think about that and focus on this surgery going smoothly. Please pray for our sanity throughout the process as well. One more thing, please pray for our other kids as they are going through another day or two without mom and dad and Peyton in the house. This is a very difficult time for them as well.

It is a really good feeling and it blesses our heart to know that you guys care enough to pray for our family and specifically Peyton. We wanted to get the word out, yet again, as we know Prayer works. Thanks for all that you guys do.

Red and Karen

Friday, October 15, 2010

Finally Home!

I will keep this one on the short and sweet side. I am so glad to be home, to have Peyton home and to be reunited with our family. This was a very difficult time for our family and it was the encouragement, prayers and support from all of you that helped us get through it.

Peyton was glad to be home and to see her sisters and brother. She played for a very short while (lightly), showed off all of her goodies that people gave her, and then quietly made her way up to her room to get ready for bed. It didn't take much to poop her out tonight.

As I said, it feels really good to be home and the thought of being in my own bed makes me really happy. No monitors, no beeping, no nurses coming in for vitals every 4 hours and no doctors waking me up in the morning on their rounds. Tonight, I will sleep well and I will be sure to thank God for helping us and Peyton get through this ordeal in Charleston. Our new motto with her is "one day at a time." We are going to celebrate the success and try not to worry about the other issues. We will take them one day at a time. We are just thankful for what we have now and that is our family (all of us) back together again!

Thanks again for your prayers, thoughts and support. I feel like you all jumped right in the trenches with us and we appreciate it!

Thursday, October 14, 2010

Post Surgery Update

Peyton resting after surgery



As most of you all know, Peyton's surgery was a success. We spoke to the doctor afterwards and he informed us that they were able to successfully place the pacemaker near her left armpit and that it only took one incision to place the lead on the heart and the pacemaker. The original thought was that it would take two.

Peyton was sore right afterwards and will be for several days. The doctor blew us away when he said we could probably go home as early as tomorrow (if she eats, drinks and uses the bathroom well). He also added, that he saw no reason that Peyton couldn't be back on her bike or a soccer field in 2 weeks. We will probably stretch that out, but what great news this is!

We have received our pacemaker instructions and I suppose are considered experts. Whatever, we still have tons of questions, but the pacemaker nurses have opened the door for us to ask anything anytime.

I have to share this one story about Peyton in the PCICU last night. This will show you that the Peyton we all know is still alive and well. Her first two questions after the surgery was over was "is the surgery over and can I go home now? We explained to her that she has to eat, drink, and rest well before they would let us go. And that we would have to go to a regular hospital room before we could go home. She was receiving a little extra oxygen at this time and couldn't stand the feeling of the tubes in her nose. She kept pulling them out and we were trying to explain to her that in order to get out of PCICU she needed to keep that in until her breathing was better. They tried to take it out earlier, but it was obviously too early. Her saturation levels needed to be consistently above 94 or higher to keep the oxygen tube off. When they had it off, Karen was explaining this to her (and at that time her levels were in the mid 80's). Peyton begins breathing really hard and fast trying to raise her saturation levels to 94. It was hilarious. We had the tube put back on (just blowing small amounts of oxygen to assist her) and her sat levels went up to 100. She looks at the monitor and says, "the number is 100 and that is better than 94." "Can we please take this thing off now?" The nurse overheard this and couldn't believe that a 5 year old was monitoring her own saturation levels. We could only laugh about it.

Well, I have said it a ton, but it can't be said enough. THANK YOU, THANK YOU, THANK YOU for your prayers, support and thoughts. This has been a very long ordeal and we are ready to get her home and reunite with the rest of our family. With that said, please pray for our other kids. Taylor, Anna-Kate and Noah. This has been tremendously hard on them as well and we want very badly for our family to be back together again SOON! Thank you so much to those of you who have been keeping our kids. You have been such a blessing to us and to them. We appreciate everyone and everything. Please pray that Peyton will do well and we will be out of here by tomorrow sometime. Also join us in prayer that her incision wound heals properly with no infection. Also because the pacemaker is a foreign body, there is a chance of infection resulting from bacteria that it could have. Please pray this doesn't happen. This would open the door to more complications. We are very thankful for the success now and we will be taking the other things one day at a time.

Tuesday, October 12, 2010

Praying For Peaceful Rest Tonight!

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6,7)

This is the first verse that we read to Peyton out of her new bible that she got the night before her last surgery. We explained to Peyton on that night that she needed to trust God and that mommy and daddy would be doing the same thing. Here we are exactly one week later and this verse will be on my mind all night tonight. The only way that Karen and I know to combat worry is to pray.

We were told today that the surgeon is contemplating going into Peyton's heart to remove the aneurysm. The cardiologist doesn't think he will, but he is thinking about it. The surgeon was not in the hospital today, so we didn't hear that from him. We should know tomorrow. That causes uneasiness in our hearts as well, because these are two totally different surgeries. One is non-open heart and one is open heart.

So as we all go to sleep tonight, we are seeking God's peace that will help comfort us and for the doctor's to make wise decisions regarding our daughter's heart and that Pey will be brave and strong once again.

God is the giver of life and He blessed us with Peyton 5 years ago and He loves her more than we do. We hate this more than anything and this is not the path we would have chosen. But as I mentioned earlier, we are not in control and we don't make the rules. This is definitely one of the most difficult things we have ever had to face. We know that there is nothing we can do, but God will do what's best and we will trust Him.

Please join us in this prayer request and thank you all for praying fervently and for all of your thoughts and concerns. I said it earlier, and I will say it again, this really helps us cope with our circumstances.

Monday, October 11, 2010

Surgery is planned!

Well, we got the official word today that Peyton's surgery has been scheduled for Wednesday afternoon. The heart surgeon came by and visited us today and shared his thoughts of how the surgery would go. He is unsure still of the placement of the pacemaker because of how small Pey's anatomy is. He was thinking on the left side just to the side of the stomach, but after speaking with one of the cardiologist they brought up the under arm location and he is considering that. There just isn't much room in her small body to place one. This is even more reason to pray that once the pacemaker is in, no infections take place and set in. We were told today, that most infections can be treated with antibiotics, but for those that can't, the pacemaker would have to be taken out and relocated so that the site could heal. Well, the problem with Pey is that there is no where to relocate.

The plan is still the same regarding the aneurysms. They are just not familiar enough with the one to do anything at this time. They want to monitor and see what happens. The doctor said today that most aneurysms are on the outside of the heart and when they burst, you really should be concerned, b/c that is blood coming out of the heart into the body. With Pey's being inside the heart (right at the center), they feel that if it burst or leaked, the blood would stay contained inside the heart. It would still make a hole (murmur) in the heart that would probably have to be repaired, but shouldn't be fatal. This is still an educated guess and doesn't make us feel very comforted. Because of the lack of information regarding this unique aneurysm it gives us lumps in our stomach's. We were hoping with the last procedure that we would be done with all of Peyton's heart issues. Even after the pacemaker is installed, there is still going to be a long road ahead and lots of monitoring from a team that is 3 hours away from where we live. Instead of being done, it seems we are just beginning again. This undoubtedly creates fear in our hearts. Karen brought up a good point tonight that with all of this, we do trust God that He knows what is best for our little girl, but at the same time, we have real feelings of worry and concern about going through all this again. Selfishly, we want her to be completely healthy and to live a normal life.

Today, was probably Pey's best day since the procedure. She had a lot of energy and did a lot more walking on her own. She was a chatter box to the nurse's and all of her company today. She also talked a lot to people on the phone. She was a trooper tonight as they had to draw blood for her upcoming surgery. She was so scared and was so worried it was going to hurt, but she went in and stayed strong. They were able to get what they needed and Pey got a pretty Barbie Doll band-aid out of it. She was mostly ready, b/c she got to perform the same procedure on a hospital doll earlier today. I have included pictures and a video showing her in action. The doll was cool, b/c she was actually able to stick a real needle into it and install an IV port. We explained to her that this was going to happen to her. This seemed to help calm her down about it.



Thanks again for all of the prayers, thoughts, and support. We hope and pray for this to be over soon so that we can get Pey home and on the road to recovery.

Sunday, October 10, 2010

The latest!


Every morning the doctors make their rounds and give us the latest update regarding Peyton's status. As of this morning, there has been no change in her heart as far as getting back to normal on its own. The doctor informed us today, that Dr. Bradley (the surgeon who will put in the pacemaker and the one who did Peyton's original heart surgery 5 years ago) has cases on Monday - Wednesday, but that Tuesday seems to be the best date to add Peyton in. So, unless something changes tomorrow, it looks like Tuesday will be the day that Peyton will have a pacemaker installed. That is what we know up to this point and so we will be waiting, hoping and praying that something changes tomorrow.

In the meantime, Peyton is hanging in there like a trooper. She doesn't want to be here AT ALL and gets very frustrated about having to lay in the bed so much and have her IV port flushed everytime a new nurse comes on. She had a nurse tell her the other day that there would be no ouchies during the flushing process. After it was over and the nurse had left, Peyton says to me, "she said there would be no ouchies and she was WRONG!!!" She absolutely hates taking all of the medicine and has asked several times if she can go home now. We had another talk to with her tonight about why we are still here and if she completely understands all of this. She says she knows that surgery will fix her heart, but that she really doesn't want to do that. It is so tough because we don't want to see her do another surgery either.

We try to keep her busy with coloring, watching music videos on-line, playing in the BIG PLAY ROOM, and going downstairs with us, Karen's parents and Houston. Going downstairs has been great. The doctor gave special orders for us to be able to do that 30 minutes at a time. Today, we actually took her outside the hospital for some fresh air. She pushed a stroller around and really enjoyed being out of the hospital bed. Actually, I am really surprised that she doesn't like being here more, b/c she loves to be tickled all over her body and I bet I have tickled on average 3 hours a day. She is going to want that to continue when we get home.

Tonight was really awesome because Jon and Nikki (who was watching two of our other children) sent us a video from Anna-Kate and Noah (which is on our facebook pages) and we showed Peyton. She was so glad to see them and asked us to play it over and over several times. She really misses her brothers and sisters and so do we.

I have included a picture and as you see in it, Peyton is actually playing doctor. She runs to the hospital section of the play room every time we go in. I guess that she wants to peform on others what the doctors do to her daily. Today, her Pop-Pop showed up to see her due to a headache. She checked his head out, put a band-aid on his forehead. She filled out a prescription and told him that he could get it filled at CVS. The other day, I went in for a boo-boo on my knee and she checked my blood pressure, checked my temp, gave me a shot and put a band-aid on my finger. I never got anything done to my knee, but when I left, it felt better.

She is really doing well with all that has happened. We are still amazed at her positive outlook and her good spirits. She is really an encouragement to us and she helps us get through this very hard process.

Once again, thank you all for your help, support, and prayers. We heard about a prayer service today at Grace Church for Peyton. We can feel the prayers and we know they are helping us get through this.

Signing off for tonight as my sweet daughter is beckoning me to come and tickle her foot/leg while she falls asleep. Have a great night everyone and thanks for everything!