Fletcher's Eye Surgery

Fletcher had eye surgery today in order to attempt to get his right eye open. He has a ptosis that keeps him from opening his eye very far and so he mostly keeps it closed. He's had this surgery once before with the final results being a scar and nothing more. Bright and early this morning we headed to Children's Hospital to try once again. This time, in the recovery room, we could see more of his eye as he awoke. It's hard to tell yet since there is some swelling and things need to settle a little whether or not this one will work but it is looking good so far.

I had to leave early to take care of some stolen check business but NeeNee said that everything went well on the trip back and that she left him at the Children's Center on the verge of lala land.

I'd like to thank everyone for their prayers.

Tooth Number Two

Maddie's lost her second tooth last night. It has been loose for a while and she kept asking me to pull it yesterday. Each time it was just a little too tight to come out. Finally I told her I'd try once more before she went to sleep. When we tried then, it popped right out. Of course pulling a tooth just before bedtime isn't the best idea if you want your kid to go to sleep right away. Maddie was pretty excited and Mommy had to take pictures of everything. Finally we settled down and Maddie put her tooth under her pillow and faded off to sleep. This morning Maddie found a "gold dollar" under her pillow and was excited that she now has two "one hundred cents" for her two teeth.

If you want to see pictures and learn more, visit my wife's blog.

Fletcher Won't Be Home Labor Day

It looks like Fletcher has C-Diff. He's been feeling bad for a few days now. One of the problems was solved by changing his ventilator settings back to what they previously were. This made him happier but he still has not been up to his standard "happy boy" attitude. My very insightful wife told me a few days ago that she thinks his stomach is hurting. I thought that it might be too but didn't think that it was the cause of anything since I think it usually hurts due to his hernia. Well, it appears that the labs came back and he has C-Diff which can cause stomach discomfort. My wife is right 98.7% of the time (which is better than Rush Limbaugh :). Because of this he's in quarantine for a while. That doesn't mean that we can't see him but it does mean that he cannot leave the unit and that we have to take extra precautions when around him.

We had planned on bringing him home for Labor Day and having the family over to cook hotdogs and hamburgers on the grill. We'll have to scrap that plan now but we'll get to do it some other time...

Fletcher's Current Struggles

Yesterday Fletcher had a pretty rough time. When I got to the Children's Center he had been bagged three times and I had to bag him twice myself while there. He seemed to be in a good mood most of the time and yet, every so often and very quickly, he would start to high pressure and desat. I was under the impression that his trach was too loose which would cause it to move around and perhaps get blocked off. I could fit most of my hand between the ties and his neck. I asked the RT to tighten it and she did but I still noticed that whenever he turned his head to the left he got uncomfortable. I told this to Denise and when she was there he was having similar problems. The RT's didn't want to change out his trach saying that when they bagged him they felt no restriction. I may be weird here but, Fletcher had similar problems a while back - almost exactly the same symptoms. When they changed out his trach most of the problems went away. I don't really know why trying to solve this problem in the same way would not work. If nothing else, how could it hurt? Anyway, my wife had his trach changed out this morning after another bad episode. He had to have some poking and prodding done on him which didn't help matters with his mood. We've also asked that his Robinol be dicontinued since that can cause thicker secretions and also itchiness (he's scratching at his head like crazy now). Hopefully these steps will help him since he's mostly happy and doesn't act "sick". The tests that they did shows that he doesn't seem to have any bugs unless he has one of those "catchall" viruses that doctor say you have when nothing else fits.

Just a little info here about our weekend and a short rant about how well parents are listened to by "those who know things" in the medical field. If I am wrong about the problem then I'll admit it but, it still doesn't mean that every little thing we can do to make things right shouldn't be tried.

Kayleigh

The wonders of the Internet... I've just been browsing through YouTube, something that I've known about for a while but have never really looked at. I just rented a DVD from one of my favorite bands called Marillion and so I decided to look for a video on You Tube that I could put here.

I first found out about Marillion in 1985, the summer after my first year of college. I had heard Lavender on the radio and my best friend Jon had Misplaced Childhood on tape. From that tape I thought that the name Kayleigh was really cool. So much so, in fact, that I named my first daughter Kayleigh - spelled the same way. Anyway, here is a video of that song from YouTube for your viewing pleasure...

Treble Makers

Yesterday Fletcher performed at The Children's Center in the Treble Makers concert. This is an annual performance that the kids do there. This year the theme was Oklahoma celebrating the 100th anniversary of statehood. Fletcher played the drums for "I've Been Working on the Railroad." He was not in the best of moods and when he got up in front of everyone he decided that he didn't want to play. I was fun watching him though. He did a little clap when he first got up there which was cute. His mother, sisters and I were there along with both grandmothers and a few friends. Afterwards, NeeNee was interviewed by Channel 9 New which was pretty cool. If you want to see some pictures the go to my wife's blog - she has some there.

A Lost Tooth / VBS

Last night Maddie lost a tooth... Her first loose tooth! I got a text message while I was watching the Bourne Ultimatum with my Dad that she had a loose tooth. Evidently this was very emotional for her and her mother as they ran the gamut between happiness and crying. Last night Maddie had been messing with it so much that it was hanging on by a thread. After her Aunt Kristi tried a few times with a washrag to pull it, she finally asked me to try. I pulled it and there was much rejoicing, and a few tears from her mother. Last night she didn't go to sleep for a long time as she anxiously awaited the Tooth Fairy (or as she calls it her Fairy Godmother) to come. Fortunately she awoke before I left this morning so I could see how excited she was with the shiny dollar left behind.

Maddie showing off her loose tooth


Maddie showing off her missing tooth (one day later)

Please note that the gap on top is not a missing tooth, just a gap - in case you're wondering :)

Last week our church had Vacation Bible School and Maddie and her Friend Lauren went. NeeNee taught the Bible Challenge and Maddie has yet to figure out that she cannot hang all over her when she's trying to teach the other kids also. It is funny to watch but frustrating at the same time. Kayleigh helped out in one section at VBS also. I don't have a picture of her in a beard or as a leper but here is a poor quality pic from my phone of her anyway. I think this was the night that she was making the dove land on Jesus' head.

Kayleigh's Home

Kayleigh's home from her vacation in Mississippi. Her grandparents brought her home on Friday and we were all glad to see her! She's gotten quite a bit darker with all the swimming she's done. She had to go straight away on a mission trip the next day. They brought a friend of her's named Marley home with them and she went along also. They spent two days helping others here in the city.

Maddie couldn't contain herself she was so happy to see Kayleigh. I'm sure she bugged her a lot but she was just so happy to see her big sister.

We all got to go to the Children's Center to see Fletcher and he was happy to see everyone also. It's great to have the whole family together again, if not in the same house, at least in the same city :)

We all went to Bricktown and rode the boats and I have to admit that things have changed quite a bit since I was there last - about three or four years ago.

Fletcher Achievements

Yesterday Fletcher moved down to one liter of oxygen from the two he's currently on. This lasted less than a day but it is a good sign that he's continuing to improve.

We have been working with him on the parts of his face - you know - eyes, ears, mouth, nose, etc. He's been real good on the nose and ears for a while but, yesterday was the first time he pointed to his eye when I asked him to. I thought that this was pretty awesome.

Another thing my wife told me is that he ate about 25 cc's by mouth. She is going to try and continue this each day and feed him herself when she can. It would be great to get him more practice eating by mouth!

A Trip to Mississippi

Well we just got back from Mississippi.  We took the girls to see Kayleigh's grandparents in Clinton. We had to leave Fletcher here and spent a whole three days without seeing him. It was tough but we had a good time while we were there. When we got back we went straight to the Children's Center to see the happy boy.

Maddie did well on the trip, better than I thought she would after being cooped up in a van for nine hours each way. The portable DVD players we took with us helped in that area :) Kayleigh is spending a couple weeks with her grandparents so we left her there. We're gonna miss her...

We had a great time but we're also glad to be back home.

No MRSA for Fletcher

We got good news Thursday. Fletcher has had two MRSA tests come back negative. He has had MRSA for 15 months. It has been in his lungs and now it is clear which means he should be having fewer problems. He's also being weaned off of some of the steroids that he's been on and this is a slow process. He's been on them for a long time and so they have to give his body the chance to catch up with making them on it's own. He has been crankier lately and we think that that's the reason. He's a tough boy though and should be able to handle it.

Here is a picture of Fletcher and me at home on the 4th of July.