So if you've watched the video I've posted of Lucas doing the CET, you see why I'm so worried. It looks a lot like seizure activity and I just want to make sure everything is ok and see if there's anything else we can do for him.
Ok, so yesterday evening Dr. Africk finally called me back. And this is basically how the conversation goes:
Dr. Africk: "So first of all Lindsey, if you wanted to schedule an EEG at any time, you could've just asked and I would've been happy to do it."
Me: "Oh, ok. Thanks!"
Dr. Africk: "So at Ochsner we don't do sleep studies with an EEG for patients under 2 years old. So I'm recommending you go to Tulane to get it done. Don't worry they have a great accredited department and he'll be fine there." Then she proceeds to give me the doctors information....
Me: "While I have you on the phone, I was wondering if you have an email address so I can send you a copy of the video of Lucas doing the seizure-type activity and I wanted to send it to you in the meantime for you to look at."
Dr. Africk: "Well, I don't use email. I don't really want to get into that; and besides, with so many patients it's hard to keep track of everything. Just call Dr. Nicholl and he'll follow up with you from here out."
Well I'm taking this as she's dumping us because we went through another doctor to schedule the sleep study. Because what other reason would she have for the attitude and letting us go? I used to love this woman. She has been with us since Lucas was a month old and has always been worried about me as well as Lucas. She gave me hugs everytime we went for an appointment and always bragged about how well he was doing. And the worst part of all of this is that I never even asked the other doctor for the EEG. She was the one who recommended it and offered to call the doctor on my behalf because it was easier for her to get in touch with the doctor than it is for me.
I can not tell you how upset I was after I hung up the phone. I never in a million years expected that response from that doctor. I cried for an hour. I mean, how can she just dump us like that? I wanted to yell and holler every cuss word in the book--even the ones that you NEVER say in front of others, especially not your mom. And when they do slip out, you apologize for like twenty minutes because you're so embarrassed. Well it's a good thing we stayed in last night, because I had just had enough of everything. I was sad and pissed off and didn't want to be bothered. I was just ready for the day to be over, and I try to never wish a day to be over because you never know how many you have left, so why waste even a minute of one day!
Well enough of that bs! ;) I tried calling the doctor yesterday to get in ASAP and he's on vacation!! Go figure, just my luck! So I called his nurse three times before she finally answered. You see the thing is, if these are seizures, they're now occurring daily. And so far, by God's grace, they don't seem to be affecting him neurologically, but with seizures you can never tell! He could be damaging his brain more and more every day and we don't know what to do to help him until we get these tests done. Well finally I stress the importance of seeing the doctor (like now!) but there's paperwork that needs to be sent over before he'll see us. And we also have to wait for a bed to free up to get the study done. FRUSTRATING. So of course I had to call the old doc today to get the paperwork sent over, and guess what? They didn't answer. Tell me you're surprised...
I barely slept last night and I've had this headache since I got off the phone yesterday. Thank God my little man smiles at me everyday because he's what helps me get through these times. I just hate to see him hurting.
And on another note, I think his little foot is bothering him now. I tried putting on shoes yesterday and he screamed. I thought he just didn't want to exercise, but when I put it on again today, he was crying with tears. I couldn't buckle it up tight either, and he wouldn't put much pressure on it. BUT, even with that, he did much better in therapy today than he did yesterday. What can I say? You win some, you lose some! I guess it's just gonna take time to get back to normal.
So please, please pray for my little man. Please let these not be seizures, and if they are, let them not be damaging his brain while we're waiting to get him tested.
Every day is something new with us, maybe I'll write a book one day....
July 29, 2010
July 28, 2010
The Crazy Eye Thing
So, what I forgot to tell you about during the last post was the "crazy eye thing" that will from now on be referred to as the CET.
Every time Lucas is asleep and gets awoken .. (is that a real word? I can't think right now) .. up by someone or something--when he doesn't finish his sleep--he starts doing this weird movement. His eyes shake back and forth a bit and his head moves side to side and he'll eventually spit a bunch of spit out of his mouth. Well this has been happening more and more often. And lately, his whole body has been moving and shaking as well. (But not in a good way.)
This started happening a couple of months ago, and I told the neurologist about it and she said, "If he's Lucas when he wakes up, I'm not worried about it." Well I was worried about it, so I told Aunt Kimsey about it and she was worried about it too. I went to see her for our 1 month check up and of course he does it in the car before we go in but not while we're there. I hung around until 4 p.m. trying to get him to fall asleep so I could wake him up in front of her to show her the CET but of course, Mr. Stubborn did not fall asleep. In fact, he didn't go to sleep until after 8 p.m. I tell ya, the boy is STUBBORN (just like his daddy)! ;-0
Well Aunt Kimsey has been working to get a sleep study scheduled with an EEG so we can definitely catch him on tape and while wearing monitors to diagnose this thing once and for all. She's so great for us. She even contacted the neurologist on our behalf to speed up the process. Dr. Africk (the neurologist) called us last night to set it up, but I missed the call and couldn't get back in touch with her then. And of course, I call before she gets in this morning and still haven't heard back from her 6 hours later. I just don't understand that! How do you call someone after hours but give them a number to call you back that goes directly to a message saying you're calling after hours and to call back in the morning. And when you do as it says, you get no return call. VERY FRUSTRATING!
But for some good news. We got our cast off!! YEAH! His foot looks awesome. They took some x-rays and everything looked great. We go back in one month to make sure everything is holding up properly without a cast on. He's a bit sore, I guess it feels different not having any support on that foot when he puts weight on it. And he's got the cutest little tan. (Everything is the cutest on him!) But I will tell you, his foot stunk!!! He gave a whole new definition to the term "stanky leg". (All the youngin's will get that reference.. hehe) His leg is very dry, his skin looks like it's peeling a bit; and he had some blisters on the back of his leg that will hopefully be clearing up soon. I tried putting some shoes on him this morning for therapy, and he screamed. His foot was swollen a bit, so maybe he just didn't want a shoe on or didn't want to do therapy (which he didn't) but time will tell. And I'll tell you! :) And I promise to post pictures of the before and after as soon as I take some new pictures of him.
Here's a video of him doing the CET. It's kind of scary to watch, but words just can't describe what he's doing...watch if you dare! ;)
Every time Lucas is asleep and gets awoken .. (is that a real word? I can't think right now) .. up by someone or something--when he doesn't finish his sleep--he starts doing this weird movement. His eyes shake back and forth a bit and his head moves side to side and he'll eventually spit a bunch of spit out of his mouth. Well this has been happening more and more often. And lately, his whole body has been moving and shaking as well. (But not in a good way.)
This started happening a couple of months ago, and I told the neurologist about it and she said, "If he's Lucas when he wakes up, I'm not worried about it." Well I was worried about it, so I told Aunt Kimsey about it and she was worried about it too. I went to see her for our 1 month check up and of course he does it in the car before we go in but not while we're there. I hung around until 4 p.m. trying to get him to fall asleep so I could wake him up in front of her to show her the CET but of course, Mr. Stubborn did not fall asleep. In fact, he didn't go to sleep until after 8 p.m. I tell ya, the boy is STUBBORN (just like his daddy)! ;-0
Well Aunt Kimsey has been working to get a sleep study scheduled with an EEG so we can definitely catch him on tape and while wearing monitors to diagnose this thing once and for all. She's so great for us. She even contacted the neurologist on our behalf to speed up the process. Dr. Africk (the neurologist) called us last night to set it up, but I missed the call and couldn't get back in touch with her then. And of course, I call before she gets in this morning and still haven't heard back from her 6 hours later. I just don't understand that! How do you call someone after hours but give them a number to call you back that goes directly to a message saying you're calling after hours and to call back in the morning. And when you do as it says, you get no return call. VERY FRUSTRATING!
But for some good news. We got our cast off!! YEAH! His foot looks awesome. They took some x-rays and everything looked great. We go back in one month to make sure everything is holding up properly without a cast on. He's a bit sore, I guess it feels different not having any support on that foot when he puts weight on it. And he's got the cutest little tan. (Everything is the cutest on him!) But I will tell you, his foot stunk!!! He gave a whole new definition to the term "stanky leg". (All the youngin's will get that reference.. hehe) His leg is very dry, his skin looks like it's peeling a bit; and he had some blisters on the back of his leg that will hopefully be clearing up soon. I tried putting some shoes on him this morning for therapy, and he screamed. His foot was swollen a bit, so maybe he just didn't want a shoe on or didn't want to do therapy (which he didn't) but time will tell. And I'll tell you! :) And I promise to post pictures of the before and after as soon as I take some new pictures of him.
Here's a video of him doing the CET. It's kind of scary to watch, but words just can't describe what he's doing...watch if you dare! ;)
July 26, 2010
I'm baaaack...
So I know it's been a while and I apologize. Most of you know Josh was out of town for a long time and came home last week so we've been having some family time. And this weekend we went visit DeeDee, Pa Paw, Caleb & "BrooklynDave" (that's what Joshua calls the twins). Of course on the way there, the darn a/c in the car went out! Not kidding...we drove around Mississippi for about twenty minutes and it miraculously came back on. Thank God because if it didn't we would've had to cancel our trip. It's just so hot outside, and we were all sweating in minutes. And poor Lucas sweats more than the rest of us, so between that and the terrible drooling he's been doing, he was drenched! So now, I'm constantly praying the a/c won't go out again.
As far as Lucas goes, he is finally getting over his staph infection. And like I figured would happen, he passed it on to Joshua from the one time he took his clothes off and jumped in the tub with Lucas. But, he's also doing better and thinks it's fun to take medicine like his little brother. Well to talk about it anyways, he's not doing so great with actually taking the medicine now, but it's too cute when he talks about it (with the biggest smile on his face)!
Lucas is still not really eating, but it's starting to turn around a bit. This weekend he ate some blueberries and applesauce and his favorite carrots! But not too much. Tonight, however, I gave him some koolaid, and his eyes just about bugged out of his head and his smile could not have gotten any bigger!! He loved it!! So I figured since he was doing great with that, I would sneak in some squash and he ate that too!!! I was teaching him the sign language gesture for eat when I would put the spoon in his mouth and then gesture "more" and do it again, and he actually started doing the sign for eat! I would give him more food and he would just smile. It was VERY EXCITING!!
I'm trying the sign language with him but I don't know very many words. I think I should get a book and learn because he actually does more sign language, even now, than he will vocalize. But I'm sure that will come too. So Nanny, if you're reading this, let me know how much a child signing book costs. If any of you have tried it and have a book to recommend, please do! One thing that's funny though, is he definitely knows the sign for "All Done" and will tell the therapists that when he's had enough--or at least he used to before he started throwing himself around on the floor.
Yes, that's right, therapy is not going great. But I should've expected that from having a month off. My boy is LAZY!! Doesn't even want to sit up. We have to trick him at home by keeping the tv on and about 20 minutes in he realizes he's getting tired and starts throwing his body around. He looks like a fish out of water--literally--flopping around on the floor. (It is kinda funny to see, I will try and video it one day. The boy's definitely got his daddy's attitude!)
Well tomorrow is our 1 month check up with Aunt Kimsey (ENT). I'm sure she will tell me he's doing great. But he still has a lot of phlegm--will it ever go away? I keep wondering, if it's this bad now, in the summer.. how bad will it get during cold season in the winter? I'll just have to cross that bridge when I get there. And did I tell you he snorts all the time? So funny. Even when he laughs.. And he does have the best laugh ever!
Tomorrow we're also going to get our cast off--hopefully for the last time. He did a better job of putting it on this time, but he is starting to get blisters again on his calf. I think that may be why he doesn't like to do his therapy--I hope anyway! I shoved some cotton balls in it today to try and help soften the edge a little. I would imagine it feels like a tender bruise. My poor guy.. As long as the doc gives his ok, there will be NO more casting for my boy! YEAH!! This is very exciting for both of us. Him because it's already a hundred degrees outside, I can't imagine what having a cast on feels like in this heat. And me, because the darn thing stinks already! YUKKIE! ;) Joshua's words and mine! And I did get to take a few pictures of the foot before surgery so I will put up some before and after pics.
I know there was something else that I wanted to tell you, but I can't think of it anymore. So I guess I'll just have to leave a little something for next time. Say a prayer for us that the casting is over and done with.
As far as Lucas goes, he is finally getting over his staph infection. And like I figured would happen, he passed it on to Joshua from the one time he took his clothes off and jumped in the tub with Lucas. But, he's also doing better and thinks it's fun to take medicine like his little brother. Well to talk about it anyways, he's not doing so great with actually taking the medicine now, but it's too cute when he talks about it (with the biggest smile on his face)!
Lucas is still not really eating, but it's starting to turn around a bit. This weekend he ate some blueberries and applesauce and his favorite carrots! But not too much. Tonight, however, I gave him some koolaid, and his eyes just about bugged out of his head and his smile could not have gotten any bigger!! He loved it!! So I figured since he was doing great with that, I would sneak in some squash and he ate that too!!! I was teaching him the sign language gesture for eat when I would put the spoon in his mouth and then gesture "more" and do it again, and he actually started doing the sign for eat! I would give him more food and he would just smile. It was VERY EXCITING!!
I'm trying the sign language with him but I don't know very many words. I think I should get a book and learn because he actually does more sign language, even now, than he will vocalize. But I'm sure that will come too. So Nanny, if you're reading this, let me know how much a child signing book costs. If any of you have tried it and have a book to recommend, please do! One thing that's funny though, is he definitely knows the sign for "All Done" and will tell the therapists that when he's had enough--or at least he used to before he started throwing himself around on the floor.
Yes, that's right, therapy is not going great. But I should've expected that from having a month off. My boy is LAZY!! Doesn't even want to sit up. We have to trick him at home by keeping the tv on and about 20 minutes in he realizes he's getting tired and starts throwing his body around. He looks like a fish out of water--literally--flopping around on the floor. (It is kinda funny to see, I will try and video it one day. The boy's definitely got his daddy's attitude!)
Well tomorrow is our 1 month check up with Aunt Kimsey (ENT). I'm sure she will tell me he's doing great. But he still has a lot of phlegm--will it ever go away? I keep wondering, if it's this bad now, in the summer.. how bad will it get during cold season in the winter? I'll just have to cross that bridge when I get there. And did I tell you he snorts all the time? So funny. Even when he laughs.. And he does have the best laugh ever!
Tomorrow we're also going to get our cast off--hopefully for the last time. He did a better job of putting it on this time, but he is starting to get blisters again on his calf. I think that may be why he doesn't like to do his therapy--I hope anyway! I shoved some cotton balls in it today to try and help soften the edge a little. I would imagine it feels like a tender bruise. My poor guy.. As long as the doc gives his ok, there will be NO more casting for my boy! YEAH!! This is very exciting for both of us. Him because it's already a hundred degrees outside, I can't imagine what having a cast on feels like in this heat. And me, because the darn thing stinks already! YUKKIE! ;) Joshua's words and mine! And I did get to take a few pictures of the foot before surgery so I will put up some before and after pics.
I know there was something else that I wanted to tell you, but I can't think of it anymore. So I guess I'll just have to leave a little something for next time. Say a prayer for us that the casting is over and done with.
July 16, 2010
Lovin' Our New Life
So today I got some kind of wild hair up my butt and decided to clean out the boys rooms. I started off in Joshua's room which used to be the catch all room before we had kids. Needless to say, one of the closets was full of junk and it took so long to go through. I still haven't quite finished but I did move the furniture around so it looks bigger.
Then I started on Lucas' room. I decided to FINALLY take down all of the medical equipment we don't need anymore! I was so nervous to do it before, because I just knew that it was too good to be true. And as soon as I would take it down, I'd need to put it all back up again. But guess what, it's down and gone out of the house completely so there's no back up plan!! WOOOHOOO! We were able to give ALL of our supplies away to a wonderful boy Tripp who lives about ten minutes away from here. He's got a horrible disease, EB, and that's caused him to have a trach as well. You can read more about him at here where his mom writes a blog about all of his troubles. He's such a great kid who's been through so much and he could use your prayers as well! And please pray for his mom and dad, that maybe one day they can pass on the extra supplies to another, and get to experience the joys of removing the trach and hearing all kinds of wonderful sounds!
When going through the supplies we were reminded of Lucas' girlfriend Isabella who gave her equipment to Lucas after she passed away on Christmas Eve. Lukie misses you Bella! And thanks for letting him borrow your equipment, and now they're being passed on to another young man for you to watch over.
Anyways, I hope you enjoy the changes I made to the blog. By the time I got finished making the changes last night, it was way too late to write anything.
So today Lucas was in a GREAT mood! I have to tell you, he loves laughing just as much as I love hearing him. So, you probably guessed it, we laugh all day! He wants to be entertained ALL day so there's not much time for anything else but playing! ;) But who needs to clean or cook anyways? I'll try and download a video soon so you can see how happy he is!
Well, I've got to go rock the big boy to sleep. He learned how to climb out of the bed and he refuses to go to sleep! Very frustrating, hope this doesn't last!
Then I started on Lucas' room. I decided to FINALLY take down all of the medical equipment we don't need anymore! I was so nervous to do it before, because I just knew that it was too good to be true. And as soon as I would take it down, I'd need to put it all back up again. But guess what, it's down and gone out of the house completely so there's no back up plan!! WOOOHOOO! We were able to give ALL of our supplies away to a wonderful boy Tripp who lives about ten minutes away from here. He's got a horrible disease, EB, and that's caused him to have a trach as well. You can read more about him at here where his mom writes a blog about all of his troubles. He's such a great kid who's been through so much and he could use your prayers as well! And please pray for his mom and dad, that maybe one day they can pass on the extra supplies to another, and get to experience the joys of removing the trach and hearing all kinds of wonderful sounds!
When going through the supplies we were reminded of Lucas' girlfriend Isabella who gave her equipment to Lucas after she passed away on Christmas Eve. Lukie misses you Bella! And thanks for letting him borrow your equipment, and now they're being passed on to another young man for you to watch over.
Anyways, I hope you enjoy the changes I made to the blog. By the time I got finished making the changes last night, it was way too late to write anything.
So today Lucas was in a GREAT mood! I have to tell you, he loves laughing just as much as I love hearing him. So, you probably guessed it, we laugh all day! He wants to be entertained ALL day so there's not much time for anything else but playing! ;) But who needs to clean or cook anyways? I'll try and download a video soon so you can see how happy he is!
Well, I've got to go rock the big boy to sleep. He learned how to climb out of the bed and he refuses to go to sleep! Very frustrating, hope this doesn't last!
July 13, 2010
With a Big Voice Comes a Big Attitude!
Well my man is finally feeling better and acting like it. I am longer wishing for the trach back--ok, well I wasn't wishing for it back, I just thought he may have needed it still, but no! He doesn't!! He is so HAPPY! It makes me want to cry just thinking about it. He is rotten, in that he already knows if he whines, he gets held, still...but I love it!
For the first time in ages, he didn't fall asleep right after he ate for two out of the three meals!! WHAT? That hasn't happened in months. I guess the medicine is working already. Which reminds me, he's got (yet another) staph infection. BOOOO.. ;) He had the staph bacteria colonized on his trach before (which basically means that it lived there all the time but it wasn't necessarily active making him sick), so I'm thinking since the hole it lived in/around closed up, it had to move on out somewhere else. And that it did. But, this should be the last time it gets active since there's no open hole to live on, so I guess time will tell on that one. I'm thinking that it may have been active for a while before and we just didn't know it, maybe that's why he was sleeping so much lately? I don't know, it could've just been the mere exhaustion from surgery or side affects from anesthesia?
But, like I said, he's acting like he's feeling better. The past two nights, after dinner, the three of us (Lucas, Joshua and I) have been playing for a while on the floor. Joshua and Lucas are already ganging up on me! They just look at each other and laugh. They even watched a cartoon together this morning and Joshua was trying to give Lucas some of his juice--of course Lucas thought it was something for him to throw down on the floor and make noise with, not to drink. I tried to give him some pears tonight for dinner. I put some on his nuni (pacifier) and at first he smiled, then I did it again and he was a little more apprehensive. The last time I tried the spoon and he got so mad at me, he looked at me, yelled a very high pitch yell and threw the nuni on the floor. I just had to laugh.
So I guess you can tell he still has NO DESIRE to eat! But he is at least starting to realize that he's hungry and the food is filling him up. It's sometimes hard to tell that he's hungry because he doesn't actually talk, and the minute you pick him up, he's all smiles, but I'm learning.
Having the trach out is a whole new lifestyle. He wants to be entertained all the time! It's like he knows that when he laughs, I laugh and we play, so he wants to laugh all the time. But I'm not complaining! I love to hear it. And if Joshua's around, he's making noises to get his attention too! Joshua started blowing raspberries on his toes and he thinks that is the BEST thing ever!! I video taped Lucas laughing yesterday so as soon as I get it off the camcorder, I'll put it on here for you all to see. But for now, here are a few pics...(yes I like to dress them alike, and since Josh hasn't been here lately, I get away with it more often) :) Enjoy!
I Love my Brother!
Very much into the cartoon.
Love the fish at the aquarium
My brother is the funniest person ever!
Seriously guys, get out of my way, I LOVE fish!
For the first time in ages, he didn't fall asleep right after he ate for two out of the three meals!! WHAT? That hasn't happened in months. I guess the medicine is working already. Which reminds me, he's got (yet another) staph infection. BOOOO.. ;) He had the staph bacteria colonized on his trach before (which basically means that it lived there all the time but it wasn't necessarily active making him sick), so I'm thinking since the hole it lived in/around closed up, it had to move on out somewhere else. And that it did. But, this should be the last time it gets active since there's no open hole to live on, so I guess time will tell on that one. I'm thinking that it may have been active for a while before and we just didn't know it, maybe that's why he was sleeping so much lately? I don't know, it could've just been the mere exhaustion from surgery or side affects from anesthesia?
But, like I said, he's acting like he's feeling better. The past two nights, after dinner, the three of us (Lucas, Joshua and I) have been playing for a while on the floor. Joshua and Lucas are already ganging up on me! They just look at each other and laugh. They even watched a cartoon together this morning and Joshua was trying to give Lucas some of his juice--of course Lucas thought it was something for him to throw down on the floor and make noise with, not to drink. I tried to give him some pears tonight for dinner. I put some on his nuni (pacifier) and at first he smiled, then I did it again and he was a little more apprehensive. The last time I tried the spoon and he got so mad at me, he looked at me, yelled a very high pitch yell and threw the nuni on the floor. I just had to laugh.
So I guess you can tell he still has NO DESIRE to eat! But he is at least starting to realize that he's hungry and the food is filling him up. It's sometimes hard to tell that he's hungry because he doesn't actually talk, and the minute you pick him up, he's all smiles, but I'm learning.
Having the trach out is a whole new lifestyle. He wants to be entertained all the time! It's like he knows that when he laughs, I laugh and we play, so he wants to laugh all the time. But I'm not complaining! I love to hear it. And if Joshua's around, he's making noises to get his attention too! Joshua started blowing raspberries on his toes and he thinks that is the BEST thing ever!! I video taped Lucas laughing yesterday so as soon as I get it off the camcorder, I'll put it on here for you all to see. But for now, here are a few pics...(yes I like to dress them alike, and since Josh hasn't been here lately, I get away with it more often) :) Enjoy!
I Love my Brother!
Very much into the cartoon.
Love the fish at the aquarium
My brother is the funniest person ever!
Seriously guys, get out of my way, I LOVE fish!
July 11, 2010
Procrastination with a Capital "P"
So happy to have my trach out! :)
So, here's to not cleaning the house today... ;)
Lucas is doing MUCH better!! Hate to sound like a broken record, but the darn eye thing is still going on. Seems like it's happening more now, almost every time he sleeps. And the stuff coming out of his mouth is more of a mucus consistency so I'm constantly looking at him to make sure he's still breathing. It even happens in the middle of the darn night so I get to wake up and see him in the camera doing it and then can't go back to sleep. We'll keep our fingers crossed for a "crazy eye thing" free night. Hopefully the doc will call me tomorrow to schedule the sleep study!
Today my sister and I took our kids to the aquarium...What were we thinking? When you have 6 kids together at one time, someone is ALWAYS crying!! As soon as one would stop, another would start and so on and so forth. And the older ones just constantly pick on each other, I'm finally starting to feel sorry for my mom for how I acted when I was little. Although, I was pretty darn close to perfect so there's not a whole lot to feel sorry about! ;-0 My little man, or should I say men, loved the aquarium. Lucas wasn't as interested as the first time he went, but he did try and get the fish to make raspberries at one point (go figure). And Joshua had a blast messing around with the penguins. He would run back and forth in front of the glass and they were swimming along side of him. Very entertaining! And when we were ready to go, it was pouring down of course, just our luck.
So this past month has been so jam packed. We started off with the first surgery then went to Tennessee the following week. We went to Dollywood the first two days, hung out with the fam for most of the time and did a little shopping and go cart riding with the kiddos. Lucas did pretty good. Luckily we stayed with family so we had a little room to spread out with the kids; this was especially nice since we had to bring all the trach accessories. And of course the night we get back in town is the night Lucas decides to tip his hi-chair over and busted his mouth open! I do have to say the one good thing about that is he is finally letting me put my fingers in and around his mouth a bit more. Usually he'd clamp his mouth shut and turn his head side to side if you even attempted to get near it.
So we came home for a few days then (as I've burned into your memory) we got the trach out. The weekend after that we went to Memphis (yes, back to Tennessee) for the kids to meet their grandpa for the first time (Josh's father and his wife). This was hopefully the beginning of a "Whitener Tradition" where we all meet up for a long weekend once a year. The kids (again) did great. BOTH boys took to their grandpa right away! I was so nervous that Lucas wouldn't have anything to do with him because he'd never met him before, but he let him hold him within the first few minutes and was smiling and making all kinds of noise for him. He especially loved his grandma Sheryl! And Joshua's long lost buddy was his Uncle Eric! Uncle E must've been the coolest guy on the planet because he was pitching the baseball to Joshua on the back porch of a bar down Beale St while the Blues Band was playing. To tell you Joshua was in Heaven would be an understatement!
Grandpa and Lucas
Lucas and Grandpa Bill's hands
Grandpa and Joshua
The Whiteners (Eric, Bill, Natalie & Josh)
Mommy thinks she's cool in Memphis -- Lucas how could you?!? ;)While I was typing this up, the little guy woke up--I'm sure from doing the darn eye thing again. Well he started making some noises so I would hear him, and his big brother was making noises right back. It was so cute, like they had their own baby language going from each of their rooms. This is one of my favorite things about getting the trach out. The boys are doing so great with each other! I'm thinking about putting them together in one room and making the other room strictly a play room because I'm tired of having toys all over the house. Hopefully that will keep most of it contained. But with two kids, two and under, I don't know if there's such a thing as contained.
Well, now it's definitely too late to clean, and I'm tired (go figure). So here's to (maybe) cleaning tomorrow! ;)
Goodnight friends!
July 10, 2010
Quick One
So of course it's late again...but I just have to write a little something since I've been so bad this month.
So this morning my little guy gets up, eats breakfast and goes back to sleep until 11:30!! I was starting to get worried that something was wrong because this is similar to how he acted before they had to put the trach in--like breathing, eating and just being up in general took all his energy so he had to sleep...A LOT! His stomach is also still bothering him. After breakfast he did the gagging and retching thing again too. Once he woke up from his nap, I waited about an hour before feeding him lunch and can you believe he tried to go to sleep again!! I was basically walking around the house yelling and singing just to try and keep him awake. I ended up giving him a bath to keep him up. That's when I noticed his stomach was as hard as a rock. I gave him an enema and needless to say, he's been a different baby since then. He's finally talking again and smiling and laughing. WHEW.. Really dodged a bullet there! I was ready to call his doctor and say that this just isn't gonna work, give me the trach back. He's still pretty congested and definitely has the upper respiratory junk going on, but the mucinex seems to be breaking it up a bit. I wish you guys could've seen him tonight (some of you did). He was so happy to see his Grannie, Aunt Sissy, Maw Sissy, Nannie B & Skyler. He was pulling himself up in the stroller to be closer to everyone and when no one was paying him any mind, he was hollering to get their attention. Now this is the baby I know!! Let's just hope he stays this way.
BTW, he is still doing the crazy eye thing with the gagging and spitting up all kinds of stuff. Still don't know what it is, but I told his Aunt Kimsey (Dr. Rodgriguez, a.k.a. his trach doctor) and she agreed that it was something to check into and she was going to call the neurologist on my behalf and schedule a sleep study and another EEG. It will mean another night in the hospital but what's one night if we can finally get some answers. Especially since now it seems he has a bit of trouble breathing when this happens. **Can I just tell you all that I LOVE this doctor!! I will never again go to another ENT because she is just that great. She's the one who got me calling her "Aunt Kimsey"; she's so great with Lucas, and with us. She deserves a medal for her great work and bedside manner. What other doctor gives you their personal cell phone number and actually answers it when you call (even at 3 a.m.). She even texts me every now and again to see how he's doing. We're gonna have to get her a little something special from her boy when we're out of the woods!
Well I'm off to bed.. night night!
So this morning my little guy gets up, eats breakfast and goes back to sleep until 11:30!! I was starting to get worried that something was wrong because this is similar to how he acted before they had to put the trach in--like breathing, eating and just being up in general took all his energy so he had to sleep...A LOT! His stomach is also still bothering him. After breakfast he did the gagging and retching thing again too. Once he woke up from his nap, I waited about an hour before feeding him lunch and can you believe he tried to go to sleep again!! I was basically walking around the house yelling and singing just to try and keep him awake. I ended up giving him a bath to keep him up. That's when I noticed his stomach was as hard as a rock. I gave him an enema and needless to say, he's been a different baby since then. He's finally talking again and smiling and laughing. WHEW.. Really dodged a bullet there! I was ready to call his doctor and say that this just isn't gonna work, give me the trach back. He's still pretty congested and definitely has the upper respiratory junk going on, but the mucinex seems to be breaking it up a bit. I wish you guys could've seen him tonight (some of you did). He was so happy to see his Grannie, Aunt Sissy, Maw Sissy, Nannie B & Skyler. He was pulling himself up in the stroller to be closer to everyone and when no one was paying him any mind, he was hollering to get their attention. Now this is the baby I know!! Let's just hope he stays this way.
BTW, he is still doing the crazy eye thing with the gagging and spitting up all kinds of stuff. Still don't know what it is, but I told his Aunt Kimsey (Dr. Rodgriguez, a.k.a. his trach doctor) and she agreed that it was something to check into and she was going to call the neurologist on my behalf and schedule a sleep study and another EEG. It will mean another night in the hospital but what's one night if we can finally get some answers. Especially since now it seems he has a bit of trouble breathing when this happens. **Can I just tell you all that I LOVE this doctor!! I will never again go to another ENT because she is just that great. She's the one who got me calling her "Aunt Kimsey"; she's so great with Lucas, and with us. She deserves a medal for her great work and bedside manner. What other doctor gives you their personal cell phone number and actually answers it when you call (even at 3 a.m.). She even texts me every now and again to see how he's doing. We're gonna have to get her a little something special from her boy when we're out of the woods!
Well I'm off to bed.. night night!
July 8, 2010
Back in the Swing of Things
Ok, so I know it's been a while, yet again, and I'm sorry, but this month has been CRAZY!
So let's see what's been going on? Well I'll just touch on the big stuff...
The trach is out! Yippee, and he's doing great. Still VERY congested but we just started some mucinex so I'm hoping that will get rid of the remaining phlegm. Sounds nice huh? :) So I can't stop kissing his neck!! I know that sounds weird, but it's just so very nice to see it, and it finally smells good (yeah, it would get kinda stinky being covered up 24/7) and he's ticklish right there and I just can't resist!!! And yes, I did get to scrub it very good and have been doing that every time he takes a bath, just because I can now.
The port is also out. And hopefully that will help him move that arm a bit more. He's already opening his hand wider and seems to be using it, but time will tell if it goes back to "normal" or not. I'm thinking it will because he seems to heal very quickly. I just took the steri-strip off today and the area where the port was is bruised and still quite sore, but other than that, it's looking good!
Well I think I told y'all but I also got the doc to change out his feeding tube "button" as well. The old button would pop open a lot, and all of his dinner would leak out onto the bed at night and it was just a hot mess! Well, I almost wish I would've just left it alone right now because that was the absolute worst part of the surgery!! He was in so much pain from the pressure of pulling the old button out and putting a new one in. He even ran fever for a few days because of this! He did not want to eat at all either. It was so frustrating because he already doesn't want to eat using his mouth, and then he didn't want to be fed using the button either...he cried every time I stuck the tube in and just gagged during and after the feeding. And he wasn't even getting his normal feedings either (the hospital couldn't get his formula in so I had to just give him whole milk--which wouldn't really be a problem, he's just on formula still for the extra calories--and they didn't give me baby food to give him until the second day). Well he's still not doing great either. I finally had to call the doctor today because he's still gagging a lot and today I thought he was gonna throw up (which is kinda impossible because he has a nissen--the top of his stomach is wrapped around the bottom of his esophagus). Poor guy had to stop in the middle of therapy twice because he was making gagging and retching sounds, got as white as a sheet, then turned green and broke out in a cold sweat. I have never seen anyone turn green before, but he really did. I didn't think that was even possible. Anyway, the doctor told me to cut back on his feedings a bit for a couple of weeks to give his stomach time to process everything. He said sometimes after surgery it takes a couple weeks to get back to normal and if he's not better in a week or two, then he will run some tests to check on things. (He told me what the test was called, but I was driving and didn't write it down and for the life of me can't remember what it's called. Oh well, we'll just hope it doesn't come to that.)
So other than the stomach problems we've been doing pretty good. Adjusting to life without a trach is much harder than I would've ever thought! I miss my suction machine, yes I did say that I missed a machine. I know, crazy me! But it's so hard to listen to all the mucus in his chest, see him trying to cough it up but just can't get the hang of it yet. I mean, he really sounds horrible. I thought all of that would just magically disappear, but it hasn't. I'm praying that once it does clear up, that will be the end of it except for colds and such, but we will see.
One thing that has been nice is traveling with only a diaper bag! WHAT WHAT!! ;) You might think I'm nuts, but you take along an extra two or three bags just to go to the grocery and see what's it's like. Come on, I dare you. And have two kids while you're at it! See how much fun that is....
Let's see, what else? Well we started back therapy yesterday after almost a full month off and....You guessed it, he did horrible!! It was almost as bad as starting all over. Between the cast pinching his leg, the stomach hurting, him being nauseous and just the pure laziness from not having to do it in so long, he was worthless. Wouldn't even sit up, and he even hung his head to the side for most of the time. I can see his new voice has come with a new attitude.
Well that reminds me, the night I stayed with him in the hospital, the first night his trach was plugged, he was so excited to hear his voice that he woke up off and on throughout the night making raspberries! It was so funny. And it took him a whole two days to realize that if he cried, he got held. So guess who's been crying a lot lately?
And lastly before I go to bed, I'll tell you about the foot. We went to see Dr. Warren (the orthopedic doc) today and he took Lucas' cast off. There were four or five pins in his foot, a couple came out with the cast, and I watched him pull two out. (It was grosser than I thought) And one lucky pin was stuck in his heel. This is kinda gross so you may want to skip down a bit...the pin that was stuck had some skin growing over it and he had to get pliers to dig it out...poor baby screamed bloody murder! I felt so bad for him, but it really couldn't have bothered him that much because he was laughing a few minutes later. Well guys, his foot looks beautiful. It is so straight already and the heel has formed too! He put another cast on for one more month and then that should be it. He'll take x-rays and make sure everything is A OK and we're done with the foot! (And another one bites the dust.. another item checked off the long list of repairs) Of course, there's always a chance the cast could go back on for yet another month or it won't work and we'll have to have major surgery, but if you would've seen what I saw today, you'd know he's going to be just fine!!
Well I know there's more but I'll post that later..
BTW, the kids met their grandpa for the first time last weekend. We had a blast with the Whitener crew in Memphis, will tell you about that next time too. And I'll also tell you about Joshua asking several waiters for chips, dip and beer. Yeah, I said Joshua, as in the 2 yr old. What a joy raising a 2 yr old very talkative boy has been. I'll have to start another blog to tell you about all of his crazy stories. I could probably write a book already!
Well thank you all for reading this very long post. I'll post regularly again so I won't have to write so much next time.
Lucas about to get his trach out...just got his versat and he's very happy!
A smaller trach was put in and capped before they actually took the trach out.
First pics without the trach!
So let's see what's been going on? Well I'll just touch on the big stuff...
The trach is out! Yippee, and he's doing great. Still VERY congested but we just started some mucinex so I'm hoping that will get rid of the remaining phlegm. Sounds nice huh? :) So I can't stop kissing his neck!! I know that sounds weird, but it's just so very nice to see it, and it finally smells good (yeah, it would get kinda stinky being covered up 24/7) and he's ticklish right there and I just can't resist!!! And yes, I did get to scrub it very good and have been doing that every time he takes a bath, just because I can now.
The port is also out. And hopefully that will help him move that arm a bit more. He's already opening his hand wider and seems to be using it, but time will tell if it goes back to "normal" or not. I'm thinking it will because he seems to heal very quickly. I just took the steri-strip off today and the area where the port was is bruised and still quite sore, but other than that, it's looking good!
Well I think I told y'all but I also got the doc to change out his feeding tube "button" as well. The old button would pop open a lot, and all of his dinner would leak out onto the bed at night and it was just a hot mess! Well, I almost wish I would've just left it alone right now because that was the absolute worst part of the surgery!! He was in so much pain from the pressure of pulling the old button out and putting a new one in. He even ran fever for a few days because of this! He did not want to eat at all either. It was so frustrating because he already doesn't want to eat using his mouth, and then he didn't want to be fed using the button either...he cried every time I stuck the tube in and just gagged during and after the feeding. And he wasn't even getting his normal feedings either (the hospital couldn't get his formula in so I had to just give him whole milk--which wouldn't really be a problem, he's just on formula still for the extra calories--and they didn't give me baby food to give him until the second day). Well he's still not doing great either. I finally had to call the doctor today because he's still gagging a lot and today I thought he was gonna throw up (which is kinda impossible because he has a nissen--the top of his stomach is wrapped around the bottom of his esophagus). Poor guy had to stop in the middle of therapy twice because he was making gagging and retching sounds, got as white as a sheet, then turned green and broke out in a cold sweat. I have never seen anyone turn green before, but he really did. I didn't think that was even possible. Anyway, the doctor told me to cut back on his feedings a bit for a couple of weeks to give his stomach time to process everything. He said sometimes after surgery it takes a couple weeks to get back to normal and if he's not better in a week or two, then he will run some tests to check on things. (He told me what the test was called, but I was driving and didn't write it down and for the life of me can't remember what it's called. Oh well, we'll just hope it doesn't come to that.)
So other than the stomach problems we've been doing pretty good. Adjusting to life without a trach is much harder than I would've ever thought! I miss my suction machine, yes I did say that I missed a machine. I know, crazy me! But it's so hard to listen to all the mucus in his chest, see him trying to cough it up but just can't get the hang of it yet. I mean, he really sounds horrible. I thought all of that would just magically disappear, but it hasn't. I'm praying that once it does clear up, that will be the end of it except for colds and such, but we will see.
One thing that has been nice is traveling with only a diaper bag! WHAT WHAT!! ;) You might think I'm nuts, but you take along an extra two or three bags just to go to the grocery and see what's it's like. Come on, I dare you. And have two kids while you're at it! See how much fun that is....
Let's see, what else? Well we started back therapy yesterday after almost a full month off and....You guessed it, he did horrible!! It was almost as bad as starting all over. Between the cast pinching his leg, the stomach hurting, him being nauseous and just the pure laziness from not having to do it in so long, he was worthless. Wouldn't even sit up, and he even hung his head to the side for most of the time. I can see his new voice has come with a new attitude.
Well that reminds me, the night I stayed with him in the hospital, the first night his trach was plugged, he was so excited to hear his voice that he woke up off and on throughout the night making raspberries! It was so funny. And it took him a whole two days to realize that if he cried, he got held. So guess who's been crying a lot lately?
And lastly before I go to bed, I'll tell you about the foot. We went to see Dr. Warren (the orthopedic doc) today and he took Lucas' cast off. There were four or five pins in his foot, a couple came out with the cast, and I watched him pull two out. (It was grosser than I thought) And one lucky pin was stuck in his heel. This is kinda gross so you may want to skip down a bit...the pin that was stuck had some skin growing over it and he had to get pliers to dig it out...poor baby screamed bloody murder! I felt so bad for him, but it really couldn't have bothered him that much because he was laughing a few minutes later. Well guys, his foot looks beautiful. It is so straight already and the heel has formed too! He put another cast on for one more month and then that should be it. He'll take x-rays and make sure everything is A OK and we're done with the foot! (And another one bites the dust.. another item checked off the long list of repairs) Of course, there's always a chance the cast could go back on for yet another month or it won't work and we'll have to have major surgery, but if you would've seen what I saw today, you'd know he's going to be just fine!!
Well I know there's more but I'll post that later..
BTW, the kids met their grandpa for the first time last weekend. We had a blast with the Whitener crew in Memphis, will tell you about that next time too. And I'll also tell you about Joshua asking several waiters for chips, dip and beer. Yeah, I said Joshua, as in the 2 yr old. What a joy raising a 2 yr old very talkative boy has been. I'll have to start another blog to tell you about all of his crazy stories. I could probably write a book already!
Well thank you all for reading this very long post. I'll post regularly again so I won't have to write so much next time.
Lucas about to get his trach out...just got his versat and he's very happy!
A smaller trach was put in and capped before they actually took the trach out.
First pics without the trach!
July 1, 2010
Guess What?
Yup, that's right. The trach's out!!
WHEW...*Huge sigh of relief*
Well I thought I was going to have time to write a bit, but I just looked over to the hospital bed and there's this adorable, trach-less baby smiling at me, so I'm going play instead. Just know that he is doing awesome and his neck is just the cutest thing ever! :)
Will write more later, we're going make some rasberries!
WHEW...*Huge sigh of relief*
Well I thought I was going to have time to write a bit, but I just looked over to the hospital bed and there's this adorable, trach-less baby smiling at me, so I'm going play instead. Just know that he is doing awesome and his neck is just the cutest thing ever! :)
Will write more later, we're going make some rasberries!
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