Friday, August 31, 2007

I was right...

When I arrived at TCC today I was greeted with this announcement: Fletcher has C.Diff! UGH! Are you kidding me? C.Diff is a bacterial infection in the intestines and this is the third time he's had it! I knew something was wrong with Fletcher's tummy! So, today they stopped the IV Vanco and now he's on Flagyl. He's also kind of in isolation, they are gowning and gloving to change poopy diapers! That stuff is toxic! He was calm and quiet when I was with him this morning, this afternoon when Maddie and I got there he was happy until he got tired! He gets kind of cranky when he's tired these days! We were going to bring Fletcher home Monday since it's Labor Day, but I think we'll wait and let him recuperate. Here's a couple of pictures the top one was yesterday, Fletcher is playing with Maddie's new play cell phone and the one on bottom was today when Maddie and I were visiting Fletcher. I took this picture because I thought his little hand looked so sweet on Maddie's arm. AWWW!

Thursday, August 30, 2007

Oh my...

Yesterday we started our day just like we always do, Maddie to school, me to Target, then off to the Center to spend time with Fletcher. When I got there he was a little cranky but I got him dressed and ready for his PO feeding. He was even crankier when he ate, so I stopped after only 3 bites of food. I thought maybe he'd be better if he went to class. I don't know what I was thinking! He had a really tough time there. I vented his G-tube thinking maybe his tummy was hurting. That turned out to a big mess and on top of all that I had to leave to pick up Maddie from school! Maddie and I went back to TCC and Fletcher was much worse, so much so that the doctor ordered Morphine every 6 hours. His central line would not draw blood so they did an arterial stick (not fun) and all his blood work came back normal. I thought there might be something wrong with his tummy, so they ordered x-rays of his lungs and abdomen. We also wondered if maybe he was going through some withdrawal from the weaning of the Methadone and Valium. We could not figure out what was wrong with him. He was irritable and cried very easily, it was heart wrenching to watch. AND remember Maddie was with me. I tried so hard to get her to understand that Bubba was in trouble and I just needed her to sit still and color. Picture this, Fletcher is literally surrounded by a doctor, 3 nurses an RT, me and Maddie! She was adjusting his bed and trying to climb into his bed, pushing people out of the way so she could see her brother. It was too much. One of the other moms came and got Maddie and she played with her for a few minutes. Then one of Fletcher's teachers came and took Maddie to a class room and she stayed there for at least 2 hours. That was such a blessing to her and me! Fletcher finally went to sleep and I went and got Maddie so we could get home to Kayleigh. He was asleep when Craig got there and when Fletcher did wake up he was so irritable that Craig just tried to help him get back to sleep. We are only allowed to stay at the Center until 9pm so Craig came home and we called to check on Fletcher at about 10pm and he was a little better. This morning when I got there Fletcher seemed worse! They said he had a pretty rough morning. I held him the whole time I was there. One of the Nurse Practitioners came into assess him and as we began to talk she decided to change his vent settings back to the way they were before we started to wean the vent. In a matter of minutes he was back to his old self! He was blowing kisses to every girl he laid eyes on, waving, showing us all his tricks! It was amazing! God is so good! Usually Maddie and I go to TCC after lunch and each day this week we've stayed so long that we've messed up her nap schedule. A lot of times as soon as we get home I lay her down and it just seems like she doesn't really get to enjoy our home and her 'stuff'. So, today since Bubba was doing so well I decided we'd stay home after lunch, let Maddie play and then put her down for her nap. I'll go see Fletcher later this afternoon when Kayleigh gets home from school.

Wednesday, August 29, 2007

Happy Birthday, Daddy!

Today would have been my daddy's 73rd birthday. WOW! This year will mark the 10 year anniversary of his death. My daddy was a hard working family man. He loved life and he loved his family. I have so many fun memories of our family life. I am number six of seven children and I remember anytime us kids would fight my daddy would make us KISS and make up! It was horrible at the time now when I think about it it's hilarious! Hey, maybe I should make my girls kiss and make up! I'm sure they'd love that! Every summer for our vacation we would visit my grandparents. They lived in Reno, Nevada when I was very young and we would load up the station wagon and my parents would spend a few days driving our family to see our grandparents. In the 80's my grandparents moved to the panhandle of Florida and we would drive there every summer. My grandparents passed away in the early 90's but our family still travels to the Navarre, Ft. Walton, Destin area for our family vacations. Oh, how I miss him. I wish he could have met Craig, Kayleigh, Maddie and Fletcher. I talk to my kids about him because I want them to know about Papa Bud. He would have loved them all so much!

Tuesday, August 28, 2007

Ballet today...

Maddie started ballet/tap tonight. She was excited all day. We shopped for tap shoes and ballet slippers after school. Last year the PreK class wore pink leotards with white tap shoes. This season the kindergartners wear light blue with black tap shoes! Maddie is excited to be on what she calls the 'blue team' and believes this year ballet will be so different. It probably won't but if that's what gets her in the door I'm all for the 'blue team'! Tonight Maddie was reunited with her ballet buddy from last season, Emily. They were so cute when they saw each other tonight and then they realized they had the exact same leotard! How fun! None of Maddie's other friends from last season are taking the class on the same night, so she'll be making some new friends.

This morning I feed Fletcher and he did better. It seems as if each day our feeding time gets a little better. Thanks you, Jesus! He also went to school today. He seemed to enjoy being with his little friends and especially his teachers. After our shopping trip Maddie and I went to see Bubba. He was sleepy! Fletcher and Maddie enjoy each other so much I just love to watch them together. Lately Fletcher has been extremely itchy so each day Maddie has made it her job to give him a 'massage' she gets his lotion out and just rubs his head. He loves it! She's also quite efficient when it comes to suctioning his nose! It's sweet and hilarious all at the same time!

Well, the EYE DRAMA when I got to the Center I was told that all of Fletcher's paper work at the doctors office and the insurance says that it's his left eye that needs surgery. Guess what? It's his right eye, it's ALWAYS been his right eye. So, now all the paper work has to be changed. So, who knows when we'll have surgery. Please join us as we pray for some kind of resolution to this complete and utter stupidity. Sigh...

Monday, August 27, 2007

A lot going on...

Yesterday was a tough day for our little man, Fletcher. He's having desating episodes again. Yesterday he had about 9 of them! Maybe all the changes he's experiencing could be part of it. Last night when I was with him they needed a urine specimen, trach secretion samples and blood for cultures. Well, last night his central line would not draw any blood so they had to stick him and they needed about 5 cc of blood! That's quite a bit when they have to do it with a needle! Poor little guy! This morning when I went to see him he just wasn't himself, but I proceeded on with our morning routine of diaper change, getting dressed then holding him before I put him in his chair for his PO feeding. Well, as soon as I put him that chair he started to desat so I picked him up and put him in his bed and we had to bag him. I asked the RT to change his trach, just in case it might be causing the problems. Fletcher seemed to perk up a little so I fed him a whopping ounce of green beans and applesauce. He did okay, but when he was done he was done! I kept him with me instead of sending him to school. I held him the whole time I was with him this morning. Maddie and I went up there after lunch today and he was trying to be happy for us, but he's just wasn't himself. Craig is with him now hopefully he's had some rest today and will enjoy his time with his daddy.

Eye surgery update: Saturday I received the referral for Fletcher's eye surgery. Great right? No, not so great. Insurance is an enigma to me. First of all, I'm really not in charge of Fletcher's medical happenings (i.e. booking appointments, setting up transportation, etc) so me having the referral on a SATURDAY with an effective date of 8/30/07 and an expiration date of 8/30/07 (no, it's not a typo, you read it correctly! UGH!) doesn't really do anyone much good! So, today I talked with the TCC lady who does handle appointments and she was clueless about what was happening. And on top of it all the person who books appointments for the surgery at Dr. Hildrebrand's office is off and has been since last week. Guess what? It only gets worse. The TCC lady calls the insurance company and they say it's not a typo that is the day of the surgery! Since when has an insurance company booked a surgery for a doctors office? Did they also call Children's Hospital and book an OR? Guess what? They didn't do any of these things! So, who knows? He might be having surgery Thursday. Tune in next time as the EYE DRAMA continues! Obviously I'm a little frustrated and would truly appreciate your prayers. As I always say, we've been trying to get his eye fixed literally since he was born. It just seems so crazy to me.

Oh, yes I do have two other children, right? Friday night Kayleigh went to a lock in at church. She had a blast. She invited her cousins and they stayed up ALL night playing games and hanging out! Boy was Kayleigh tired when I picked her up on Saturday. At one point on the way home I was talking to her and I looked over at her and she was asleep! Good times! Tonight Craig and I went to Open House at Kayleigh's school. She seems to have some really nice teachers this year.

Maddie is enjoying Kindergarten so far. She isn't experiencing any anxiety when I leave her at school and she is tired and hungry when I pick her up. Today we ate lunch at 11:00 am! We usually go home for lunch and then head up to see Fletcher, because as soon as RSV season starts in October gone are the days of her being able to go up there with me. Tomorrow night Maddie starts tap and ballet again. We have been off since last May, she's pretty excited to get started again. I'll post some pictures tomorrow of her in her new leotard, which is blue this time. I still haven't purchased her tap shoes and ballet slippers we'll do that tomorrow after school. Need to go for now! Thanks for dropping by!

Thursday, August 23, 2007

A New Day...

I would like to thank all of you for the sweet emails and encouraging comments. Please know I am better today. I went to the Center this morning as always and Fletcher was NOT having his tube feeding, praise the Lord! So, I got him dressed and held him for a few minutes and then put him in his wheelchair to feed him. As we all know, he's not a big fan of 'the chair' so he wasn't too happy with me putting him that thing. I decided to use a little tough love in hopes that he'd just power through it. He really didn't enjoy eating and I feel like something is wrong. This week has been a big week for him. Remember last week when they made some vent changes? Well, they made a few more this week. Also, he has a new PCP (primary care physican) Dr. Khichi. Dr. Khichi is one of PICU doctors at Baptist and he knows Fletcher VERY well. Dr. Khichi has taken over all the vent patients at TCC. Craig and I are very happy to have him taking care of Fletcher. We know he will be aggressive in vent and med weaning. Anyway, Fletcher is also being weaned off of Methadone and Valuim. So, let's think this through: serious vent changes, PO feedings and we're weaning some pretty hardcore meds. That's a lot to deal with, don't you think? I do. Tomorrow I am going to The Center at 8:15 am and I'm going to try and feed him one more time. Fletcher's speech therapist will be there so hopefully we can come up with something. I feel like I'm asking too much of him right now. Please continue to pray that we'll have wisdom on how best to help him. When Craig was with Fletcher tonight he said Fletcher's the worst he's seen him in a while. So, if Craig is worried, I'm worried!

Last week was the Treble Makers concert and News 9 was there to do a story on a little girl who had been a patient there. The story aired today, if you missed it you can click on the link below and see the story. They did a really nice job with it. Channel 9 News Coverage Okay,when you see someone you know, please realize she didn't have fair warning that she was going to be on the news! Because trust me, if she knew she would have looked a lot better than she did! :)

Okay, one more thing. I have a sweet mom friend at The Center and she has a little boy named Andrew. Andrew is going to go home for a day trip tomorrow. He is eight months old and hasn't ever been to his family home. After he was born he went straight to the NICU and then when he was about three months old he came to TCC. One reason I love you all so much is because I know you pray for me. I'd like to ask you all to pray for sweet Andrew and his family tomorrow. It's their first trip home so Catherine and Eric are feeling a little anxious but all at the same time they are extremely excited. Would you all please pray that their trip would go smoothly and it would just be a sweet time at home for them all under the same roof. If you'd like to see pictures of Andrew and read all about him click here. Thanks so much!

Wednesday, August 22, 2007

First feeding, kind of...

Yesterday we started on the road to feeding Fletcher by mouth once a day five days a week. He is officially a part of the 'feeding program' at TCC. The picture below is a picture of his first food tray. The cafeteria will bring a tray very similar to this one every morning for his 9:00 am feeding. I will say that it hasn't gone off without a few 'people problems'. Like I said earlier we started the feeding program on Tuesday, he wasn't 'supposed' to get his normal tube feeding until after I fed him orally (aka PO), well when I got there yesterday he was having his normal 9:00 am feeding! UGH! I did feed him a little bit, it was more for me than for him. Of course, I complained and everyone was very sorry and now there are signs everywhere that tell them to hold his 9:00 am tube feeding. Today when I arrived at 8:50 am again Fletcher was having his 9:00 am tube feeding, when I saw this I will say I lost my cool and I said rather loudly, 'Why is he eating?' Have you seen the commercial about using your debit card and how it makes things go smoother and faster and then there's the lame person who has the audacity to pay cash for something and everything comes to a screeching halt? Well, that's what happened today when I kind of yelled, 'Why is he eating?' Everything and everybody came to a standstill and just stared at me. Again, UGH! If my sweet husband or Kayleigh had been there they would have left the building out of sheer embarrassment. I did feed Fletcher a little bit today but it didn't really seem enjoyable to him. I will admit I was very discouraged this morning. I have been looking forward to feeding him and it is not going at all like I thought it would. I spoke with Fletcher's speech therapist today and questioned if it's a good idea to orally feed him, maybe he's not ready. She encouraged me not to give up and give it a little more time. So, we'll see. As I type this I am in tears I can't express how sad I am feeling over all of this. It is, of course, compounded by a realization I had a few weeks ago. One day someone asked me how old Fletcher was and I told them two and a half and then it donned on me that in December he'll be three! And then I began to focus on the fact that my toddler isn't toddling. I began to focus on all the things he can't do. It's sad I know, but I'm just being really honest here. I've been struggling with this for weeks now. The other day I was in my van all by myself and I was having some prayer time and I began to weep to the Lord about all this and tell Him of my hurts and my unmet expectations. I listed a few things very specifically: I had dreamed of taking Fletcher to school everyday, I dreamed of him playing with Maddie and enjoying his family. Well, guess what the Lord reminded me of? I DO take Fletcher to school everyday it's just not Will Rogers Elementary and Fletcher DOES play with Maddie and he definitely ENJOYS his family. I will say I'm still struggling, but when I do I'm trying to remember all the positive things that have happened with my sweet boy and how much I enjoy being with him. I would definitely covet your prayers for the struggles I'm having and for us to have wisdom when it comes to feeding Fletcher. I want him to enjoy eating. I don't want it to cause any health issues for him just because I have a maternal need to feed him. Thanks.

Thursday, August 16, 2007

Treble Makers Concert

Today Fletcher participated in the 2nd Annual Treble Makers concert at TCC. The theme of the program celebrated Oklahoma's centennial. Fletcher and a little girl in his class played the drums (sort of) to 'I've Been Working on the Railroad.' He started out happy but after too long of a wait in his wheelchair he got grumpy! After his performance Craig took back to his unit and when I went to check on him he was out like a light!

Before the performance...

During the performance...

and after!

Yesterday one of Fletcher's doctors made some changes to his ventilator, meaning he is having to work a little harder to breathe. The changes are very small attempts to weaning him off the vent but, we have to start somewhere! Hopefully he'll be able to handle these changes and we'll continue to work on him getting off the ventilator. I believe that's why he was so tired and grumpy this afternoon. Breathing is hard work!

This morning I was able to feed Fletcher! Oh how sweet that was for me! He did pretty well. I think he enjoyed it as much as I did! Fletcher ate some carrots, fruit and some kind of meat, all baby food, of course. He really liked the carrots. Since his swallow study I have been cleared to feed him once a day until we see how he tolerates eating. I'm there every morning so I'll be feeding him each day before he goes to school. Sounds kind of normal, huh?!

eating carrots, I think...

signing the word 'eat'

Wednesday, August 15, 2007

Back to school

Today Kayleigh started the eighth grade and Maddie started kindergarten. Kayleigh told me she was thought today went better than she thought it would. She's been worried because she is on a team without any of her 'old' friends. Craig and I tried to encourage her that this could be the year of the new best friend, the friend she's always wanted. Sounds like it went well today for her and that this is going to a fabulous last year in middle school! I'm sure she'll make the best of it! When I picked Maddie up after school I asked her how her day was she said, "It was okay, kind of boring, though. I don't know why they have all those toys if they won't let you play with them." I assured her that there would be plenty of time to play with all those toys! Right now Kayleigh is watching TV and relaxing after a long day and Maddie is still napping. Hopefully we're off to a good start with getting back into the whole school routine. Aren't these girls gorgeous?

Sunday, August 12, 2007

It happened!

Last night Maddie came into our bedroom saying her tooth was loose. I've heard this story before so I didn't get too excited. Well, when I looked at her tooth sure enough, it was loose! I began to cry, of course. My baby daughter is growing up, her first loose tooth! We both went through quite a few emotions. At first she was excited, then she noticed a little blood, so the tears began to flow, then she was worried it was going to hurt and then she decided she didn't want to lose her teeth! Craig was at the movies with his dad so we waited until he came home so he could see the loose tooth. Maddie was once again excited, but decided she did NOT want daddy to pull her tooth, he agreed. This morning she woke up excited that she hadn't swallowed her tooth in her sleep. We went to church and everyone now knew she had her first loose tooth! Tonight we went to Mimi & Papa's for burgers, Maddie was playing outside with her cousin and came in to say her tooth hurt. She showed Craig and asked him to pull it and he did! Oh, what a joy to lose your first tooth!

Maddie's first loose tooth

Look it's gone!

Last week was very busy, we had VBS at church every night. Our whole family was involved. I taught the Bible Challenge rotation which was a lot of fun, Kayleigh made her acting debut along with her cousin Megan, at the Bible Story rotation, Maddie of course was one of the many kids we were able to minister to and Craig showed up each night to help in any way he was needed. He was also a great chauffeur! Maddie invited her friend Lauren and we picked her up each night. They had a blast together. It was a fun experience for our whole family.

Kayleigh & Megan at VBS

Maddie also had another first this week. She had her friend Lauren spend the night. WOW! That was interesting. I made a palette for the girls on the floor in Maddie's room and they laid down at about 9:30pm at 11:15pm I went to check on them and they were still talking! I had to lay down on Maddie's bed until they fell asleep! And at 6:45am the were standing beside our bed staring at me! Again, WOW! All in all it was lots of fun.

Maddie & Lauren spend the night buddies!

Fletcher had a dysphagiagram (swallow functioning test) at Baptist Hospital on Thursday. When we began feeding him by mouth last October we always put his speaking valve on. He's not a big fan of the speaking valve, he tolerates it but he doesn't like it. Anyway his speech therapist wanted to see how he swallowed without the speaking valve and he did okay. We will not be able to give him thin liquids like apple juice because that came out his trach, not good. He did have a few problems swallowing and now his speech therapist will talk with Fletcher's doctor and the nutritionist at TCC. In all honesty, it was disappointing to me. I mean really, why does this have to be so hard? All I want is to be able to feed my baby some baby food. I do want to do what's best for him. And I'm sure it will be worth the wait. The best part of this trip to Baptist was that we were able to go up to the PICU and see our sweet friends there! Fletcher showed off for them and boy were they impressed! These are the very nurses and RT's that saw Fletcher at his worst and they helped nurse him to health. I'm sure it does their hearts good to see how far he's come from being a 7 lb, malnourished, failure to thrive, intubated little mess to a 21lb, smart as a whip 21/2 year old!

My sweet boy!

I'm sure there is a lot more to tell you but it's getting late. I'll blog again soon!

Friday, August 10, 2007

Here's a Little Funny

This doesn't happen every night at our house, but when it does this song is soooo appropriate!

Wednesday, August 1, 2007

Kayleigh's Home

Last Friday Kayleigh came home from Mississippi and her long time friend Marley came with her. What a blessing to have Kayleigh home. She and Marley went on a 'mini mission trip' with the youth from our church. They were able to help clean up an abandoned house, they also went door to door collecting canned goods. On Saturday they spent the night at the church and didn't come home until 6 pm Sunday. Sunday afternoon they went to my sweet friend, Carol's parents house and helped them pack and clean up for Carol's family's big move to Tulsa. They had a great time and learned a lot. And they realized how much they have to be thankful! On Monday Kayleigh and her grandparents, Monna and Pops took Marley down to the Oklahoma City Memorial Museum, then we went to dinner and then back to Bricktown for a canal ride. And of course we had to take Marley to Braum's for the best ice cream ever! What a great time we had! Monna, Pops and Marley left early on Tuesday morning we miss them already! Hopefully Marley can come again she was a joy to have around and Kayleigh really had lots of fun with her!

Kayleigh and Marley - 'the blondes'

As you can see, things have been quite busy around here. Last night was the premiere of 'Bourne Ultimatium' the new Matt Damon movie. It was here in OKC and along with it was a fundraiser for TCC. I believe they had a dinner and then everyone went to the premiere. The tickets were $150.00. They raised nearly $200,000.00 to benefit the children at the Center. Isn't that awesome? The Children's Center also made a trailer that was shown before the movie and guess who made their debut? You got it. Fletcher Burns and his mommy! Even though we weren't at the premiere ourselves we still got to be a part of something rather cool!