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!

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.

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!

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 continues...today 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...

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!

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!

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.