Sunday, March 29, 2009

So sweet...

Yesterday Maddie 'snuck' this note onto the counter in our master bathroom...




if you can't read it it says...

My Prayer

Dear lord I hope

you can make

fletcher feel

better and he can

come home with

his family soon

because I feel bad for

him and I love him so much that I

miss him. Amen

from: opps cant tell

I'm not sure why Maddie wanted to be anonymous but she did. Sometimes I don't realize how Fletcher not being at home affects her, but obviously it does. The unit has been closed since January so she hasn't seen him for awhile.

Here's a fun little video of my time with Fletcher late this afternoon. I love this kid!

video

Friday, March 27, 2009

Port update...

Well, Fletcher's surgery went well yesterday. That kid is so amazing to me! He's such a trooper and oh so strong! I hit the ground running at 4:30 am and was at TCC by 5:30 am. Fletcher woke up in a great mood and was excited to go on an 'adventure' until we walked into Outpatient Services! Man, was he mad when he realized where he was! The surgery was scheduled for 7:45 and they were on time! The surgeon came out after they took the existing port out and told us it wasn't defective but that it had some fibrous tissue like scar tissue around it and that's why it wasn't working. Dr. Tuggle then told us Fletcher's chest needed a break and he put the port in Fletcher's groin on the left side. OUCH! We are praying this one will last for a long time. He's doing really well today a little cranky and I'm sure he's probably very sore. Thank you so much for for being so diligent in your prayers for him and us! Yesterday was a tough day for me emotionally. I don't think I'll ever get used to them wheeling him away to surgery but I don't usually cry and yesterday I cried. I think as he's getting older he's realizing what's going on and it scares him. Yesterday was really weird they didn't have enough beds so we took him back to the surgery holding area in his wheelchair. When it was time for him to go into the OR they kept him in his wheelchair he held out his hand for me to hold it so I did. I didn't realize he thought I was going with him so I had to let go of his little hand and let complete strangers take him away. Heart wrenching! It makes me tear up now as I write this! It's never going to get easier so I'm hoping for less frequent. Again thank you for being the Body of Christ to our family, as Fletcher was being whisked away into surgery I wasn't able to pray right before he went in and I immediately thought about all of you and I knew you all were praying. I had of course, been praying for Fletcher, he just didn't get to hear me pray for him. I think that's one reason why I was so emotional!

so cute!!

We're supposed to have some snow tonight so today I've been busy going to the grocery store and cleaning up the garage so I can park my car in there! I did a little home improvement project on spring break...I painted my fireplace. It looks absolutely amazing. I'm so happy with how it turned out.

before

after

Speaking of spring break, Kayleigh went to Mississippi last week with her grandparents. She had a great time visiting family and hanging out with old friends. We missed her! It's quiet around here without her! Kayleigh leaves this afternoon for Tulsa. She's going to Acquire the Fire which is a big youth rally type of deal. I'm praying for safe travel and for her to have a life changing time, for her to know Jesus in a more intimate way. I'm sure she'll have a great time she's very excited.


Kayleigh waiting in the cold to go to ATF



Maddie is doing great, as well. She's still loving first grade. This week she and a few other kids got to go to the library and check out CHAPTER books. Very exciting! She'll take her first AR test next week. Maddie is also getting ready to bridge over into Brownies. Last night at Girl Scouts the first grade Daisies were able to hang out with the Brownies. She loved it! Now if we could just get her to go by herself and let mommy have a break that would be nice. Her troop ended up selling 8,300 boxes of GS cookies! And we have less than 30 girls! So proud of all of them!



Craig is doing well. He's fixing to do a big honey-do project for me. We are in desperate need of a new stove. Ours is original to the house. It's going to be quite a project because this stove is a 'drop in' stove and it's smaller than a normal stove. So he's going to have to cut the counter top to make room for the new one. That's a pretty scary task so he's going to have one of his buddies help him. I'll take before and after pictures when we're all done.


Well, that's it for now. Hope you all have a great weekend! Stay safe!

Wednesday, March 25, 2009

Surgery tomorrow...

Thursday morning at 7:45 Fletcher will have yet another surgery for his port. As I'm sure you may recall this will be the third surgery of this type in about three months! They will surgically remove the existing port, I would have said 'old' port, but it's far from old! And they'll replace it with whatever will go in, another port or another central line. I'm still hoping for a port. I love that it's under his skin and there is no tubing hanging off of his body. I have requested that this time no residents touch my sweet Fletcher, they can watch but I do not want them cutting on him. Please pray with me that they will honor my request and treat Fletcher the way they would treat their own child if they were in this same situation. I always get the feeling that they think of Fletcher as some kid at TCC that no one cares about, that doesn't mean that's how they actually feel that's just my take on the situation. Anyhoo, Fletcher and I will leave TCC at 5:45 AM!!! Man, that's early. I need to get off this computer and get to bed. I do, however, want to leave you with a little video of Fletcher and my empty Starbuck's cup. You'll see just how smart this little guy is! I'll update tomorrow night with how things went. Thanks so much!


video

Wednesday, March 18, 2009

Ultrasound results...

Fletcher and I went to Baptist Hospital this morning for his renal ultrasound. Things went well and we were able to go up to the PICU and visit our friends there. It's always great to visit and NOT have stay there! :) I got a call from TCC this afternoon and the US showed no blockages or stones of any kind. It did show that his kidneys are enlarged for his size and age. What this means I'm not sure. They are making an appointment for Fletcher with the nephrologist over at Children's Hospital, hopefully he can give some direction on what to do with our little guy. That's all I know for now. Thanks for your prayers!




waiting for our friend Mr. Joel to pick us up today...

Monday, March 16, 2009

Update...

Okay here's the deal...Fletcher will have a renal ultrasound at Baptist Hospital on Wednesday morning. One thing they will be looking for is kidney stones. His lab work came back normal today except the creatitine was still elevated. Fletcher has been in a good mood for the most part. His heart rate was elevated a little this evening and he was fussy so they gave him some tylenol. I forgot to mention in my last post that Fletcher's port will not draw blood or flush. This is bad news because it will have to be surgically removed and replaced. The surgery is scheduled for next Thursday. Boy when it rains it pours over here at Casa Burns! I'll keep you posted after the ultrasound. Thank you so much for keeping the boy in your prayers!

Sunday, March 15, 2009

Prayer Request...

This morning Fletcher had an episode where his heart rate dropped into the 30's. They did blood work and found that his phosphorus and potassium are too high. They did another lab called a BMP (Basic Metabolic Panel) to check his protein, calcium, and creatinine I do not know the results of this test. They will do another BMP in the morning. They put a foley catheter in him this evening and will monitor his urine for 24 hours. They also want him to have a renal ultrasound as soon as possible. They will call in the morning an try to get the ultrasound scheduled. So, all of this to say please pray for our little guy and that we'll be able to get that ultrasound very soon! The last time I checked on him (about 10:30p) he was sleeping. Fletcher was in a surprisingly good mood when Craig and I both saw him today. He didn't seem to be experiencing any pain and his heart rate and oxygen saturation were normal. When I arrived this afternoon the crash cart was next to his bed and he was hooked up to a heart monitor. Let me tell you, I'm thankful for the crash cart but it still makes my heart worry every time I see it! Well, that's it for now. I'll keep you posted and as always thank you for praying for our sweet boy!




This picture was taken last Thursday. I just wanted to leave you with a cute picture of a cute boy!

Wednesday, March 4, 2009

To Chew or Not to Chew...

February 16th? I can't believe it's been that long since I last updated. Sorry, friends! Things are busy around Casa Burns and we're just waiting for spring break so we can take a breath and relax.

Let's start at the top...last week Craig and I celebrated our 8th year of marriage. I was surprised that afternoon with a delivery of 8 gorgeous red roses. Craig also took me to dinner at Outback and we enjoyed a wonderful meal and great conversation as we reminisced over the last eight years. Boy have we had an interesting go at it!


Kayleigh recently enrolled in 10th grade! WOW! My baby's growing up! She's also very excited and ready for spring break. Kayleigh's grandparents are planning to come to OKC, spend the night and then head back to Mississippi with Kayleigh in tow. She is so excited to see her grandparents, aunt, uncle and all her childhood friends. It should be a great time for all involved.



Maddie is staying busy as well. She continues to love ballet and Girl Scouts and just finished selling 266 boxes of Girl Scout cookies! Man am I glad that's over! Maddie is also doing very well in school. We had her parent teacher conference last week and she's already ready for 2nd grade! And...by the end of 2nd grade there are 300 sight words she'll have to know and as of last week she knows 297 of them! Can you believe it? We are so proud of our little reader. It was such an encouraging conference. Mrs. Johnson said that Maddie isn't bored and that she's an appropriate 1st grader. That's great news I would hate for her to be bored at school she could probably stir up all kinds of trouble with too much time on her hands!



Fletcher is doing great and seems to be feeling well. Now that doesn't he isn't bored! Because that little toot is causing some problems for himself. Fletcher has a new tendency to chew on things when someone isn't paying attention to him. This seems to happen mostly on second shift (3p-11p) He's been chewing on his tubing and vent circuits. You see, if he chews just long enough and in the right spot his vent will alarm and someone will come to the rescue ie pay attention to him. Do you get where I'm going with this? He's intentionally making that alarm sound! The nurse practitioner had to have a serious talk with me last week informing me that Fletcher is a danger to himself! Think about it, if they don't get to him in time just about anything could happen. So, they're all working together to come up with some practical solutions such as sitting him up in his wheelchair, therapy schedule changes and a scheduled nap time each day. It seems to be working. Although now Fletcher is chewing on his sleeves and his loveys (burp cloths). So, we've started dressing him in short sleeves. I don't know what we'll do about the lovey. He sleeps with them and I don't know if emotionally I'm ready for him to give up the lovey! I took pictures of one of his loveys and a pajama top.


Well, I'm going to close for now we need to get to church. I just wanted to do a quick update so you all would know we hadn't fallen off the planet! We're all doing well just super busy! Have a great week!