So tomorrow's the big day. What can I say? I've been waiting for tomorrow since April 8, 2009. (The day the trach went in.) Now that tomorrow's here, I'm getting a bit nervous. I mean, our whole lives are about to change...again. I don't know whether to smile, scream, laugh or cry. I can't shake the feeling that this is not real, that it's not really going to happen. I mean, this isn't the first time we thought it was coming out. Last November we were sure he was ready, but he wasn't. Is he really ready this time? I think so. He took his trach out all by himself Sunday! If that's not a sign, I don't know what is.
I just got the call, we have to be there for 9:45 in the morning. No food after midnight and only apple juice till 7:45. Just be glad you won't be there for Mr. Cranky when he doesn't get to eat his breakfast in the morning.
I had plans of picking up today. Moving all the medical supplies out of the living areas and get ready to pack them up, make the house look a little less hospital-ish. But now I'm afraid if I do that, then I'll just have to unpack it all when we come home. I know, I know...I'm being silly. I just can't believe it's here. Now! The trach is coming out tomorrow. We'll be able to go to the store with just a bottle bag soon. Sleep in peace. Not be nervous to take a bath. Not have to wake up in the middle of the night to change his trach out because he got a plug (like last night). We can go swimming. Take a car ride without worrying where the a/c is blowing on him. Sleep at a friends. Get a babysitter. There's so much more, you have no idea. We'll almost be normal. WHAT?!?! I don't even know what that's like anymore. Maybe we'll soon find out.
AAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHH!!! The trach's coming out in hours.. hours.. that's almost minutes.
Boy, I sure hope I get some sleep tonight. Keep us in your prayers. Thank you all for your support!!
June 29, 2010
June 25, 2010
We're back!
Hello everyone, so sorry I've been away so long. I hope you all missed reading as much as I missed writing to you!
Well there's so much to talk about, I don't even know where to begin. The days before we left for Tennessee were a bit rough. Even though the little guy did awesome immediately after the surgery, he caught some kind of reaction to something they used for his circumcision and had a huge reaction. I mean HUGE! And the ointment I was supposed to be putting on the area only made it worse. It was so bad, it looked like he had a chemical burn! Poor little guy. But after a few days on the new ointment, it did get a little better. But it still hasn't gone away yet, hopefully soon....Also, the ceiling fan in his bedroom went out. And if it wasn't hot enough in there before, it's blazing now! I still have a standing fan and the blower pointed in his room, but the little guy is waking up drenched! To top that off, our a/c is not keeping up either. I have to keep it set on at least 72* and it's still almost 80* by the time we go to bed. Please pray Lucas doesn't get sick.
As far as the trip goes, he did great in the car ride (Thank You God!). I did make sure to suction him pretty frequently and even the kids knew to check the vents and told me when they thought it was blowing too hard on him! (So we didn't have a repeat of last summer's Disney trip.) The first two days there we went to Dollywood, which is like home away from home for me. (For those of you who haven't been there in a while, there is so much new stuff to do.) They had a ton of rides for all ages! We had a blast. Especially on the second day when the little kids got to run around in the water area, so cute! The next few days we just hung out around the house and let the kiddos play in the pool. We stayed at my sisters brother-in-law's home in Knoxville. His house was gorgeous and had plenty of room for all of us. The last few days we went to the big outlet mall and took the kids to ride go carts. We had a really good time; it was a very relaxing trip. Sometimes it's just nice to get away even if you don't do much!
The ride home went smoothly, we left early so we got home a little before 3:00 p.m. But by 6:00 p.m. we were headed to the ER! NO KIDDING! Lucas was sitting in his hi-chair and tried to get out and go play and the chair just toppled out of the chair it was on. UGH! My little guy busted his mouth up! His bottom two teeth came straight through the skin right under his lips and the piece of skin on the inside of his upper lip was ripped away from his gums. The blood was just poring out everywhere. It even started coming out of his trach, which for us means very bad news. Since he's still not eating, all of the blood he was swallowing was going in the wrong hole, and that makes it pretty likely we'll get another infection. On the way to the hospital, he fell asleep in the car. When I tried waking him up, he was not responding at all. His eyes were rolled back and his body was limp, but thank the Lord he was breathing fine. I was finally able to wake him up after about 10 minutes or so and he was fine after that. They did a CT scan and thank God, no broken bones in his head or brain damage. They think he had a slight concussion in the car. :( We won't know for sure if his upper teeth will be messed up until they come in, but if they are messed up, they could come out black or have black spots on them or be crooked or broken. Just our luck huh! His upper lip area is still very swollen, but his bottom lip didn't stay very big for long. He does look like he got punched in the face though. But by that night, he was laughing and smiling and almost back to himself. He's such a trooper!!!!
So we went for our pre-op clearance for his trach removal and got the final ok!! YAY!! (As long as he doesn't get sick before then..*knock on wood* because last time he did.) He's going to be in-patient this time and will have to stay in the hospital for about three days. They're going to put a smaller trach in and then plug it up and keep him on the monitors and make sure he does alright, then they're going to remove it completely if there are no problems (I mean, when there are no problems!). They're also going to remove his port this time around, which should make therapy a little more comfortable. Everything is set to go on Wednesday, and it looks like we'll be leaving the hospital and heading straight for Memphis so the boys can meet their grandfather for the first time. We're all very excited and can't wait for the long weekend.
Well I'm sure there's so much more I forgot, but now that I'm back home, I'll have plenty of time for regular updates again. You know, until we go back in the hospital, then go out of town again.. :)
When Lucas gets his trach out ... we'll be able to take a trip and just bring clothes. No machines, no tons of medical supplies, no special soaps and water...I could keep going but I'll stop! I should've taken a picture of how packed our car gets for trips, but never again!
Days now people, days!! WOOHOOO! I'm so happy for you my baby, I'm proud of how great you've done this past year and hope you're many years to come go by much more smoothly. I love you Lucas! Or as Joshua would say, "I love you Bookie Wookie!" Love you too Joshua!
Well there's so much to talk about, I don't even know where to begin. The days before we left for Tennessee were a bit rough. Even though the little guy did awesome immediately after the surgery, he caught some kind of reaction to something they used for his circumcision and had a huge reaction. I mean HUGE! And the ointment I was supposed to be putting on the area only made it worse. It was so bad, it looked like he had a chemical burn! Poor little guy. But after a few days on the new ointment, it did get a little better. But it still hasn't gone away yet, hopefully soon....Also, the ceiling fan in his bedroom went out. And if it wasn't hot enough in there before, it's blazing now! I still have a standing fan and the blower pointed in his room, but the little guy is waking up drenched! To top that off, our a/c is not keeping up either. I have to keep it set on at least 72* and it's still almost 80* by the time we go to bed. Please pray Lucas doesn't get sick.
As far as the trip goes, he did great in the car ride (Thank You God!). I did make sure to suction him pretty frequently and even the kids knew to check the vents and told me when they thought it was blowing too hard on him! (So we didn't have a repeat of last summer's Disney trip.) The first two days there we went to Dollywood, which is like home away from home for me. (For those of you who haven't been there in a while, there is so much new stuff to do.) They had a ton of rides for all ages! We had a blast. Especially on the second day when the little kids got to run around in the water area, so cute! The next few days we just hung out around the house and let the kiddos play in the pool. We stayed at my sisters brother-in-law's home in Knoxville. His house was gorgeous and had plenty of room for all of us. The last few days we went to the big outlet mall and took the kids to ride go carts. We had a really good time; it was a very relaxing trip. Sometimes it's just nice to get away even if you don't do much!
The ride home went smoothly, we left early so we got home a little before 3:00 p.m. But by 6:00 p.m. we were headed to the ER! NO KIDDING! Lucas was sitting in his hi-chair and tried to get out and go play and the chair just toppled out of the chair it was on. UGH! My little guy busted his mouth up! His bottom two teeth came straight through the skin right under his lips and the piece of skin on the inside of his upper lip was ripped away from his gums. The blood was just poring out everywhere. It even started coming out of his trach, which for us means very bad news. Since he's still not eating, all of the blood he was swallowing was going in the wrong hole, and that makes it pretty likely we'll get another infection. On the way to the hospital, he fell asleep in the car. When I tried waking him up, he was not responding at all. His eyes were rolled back and his body was limp, but thank the Lord he was breathing fine. I was finally able to wake him up after about 10 minutes or so and he was fine after that. They did a CT scan and thank God, no broken bones in his head or brain damage. They think he had a slight concussion in the car. :( We won't know for sure if his upper teeth will be messed up until they come in, but if they are messed up, they could come out black or have black spots on them or be crooked or broken. Just our luck huh! His upper lip area is still very swollen, but his bottom lip didn't stay very big for long. He does look like he got punched in the face though. But by that night, he was laughing and smiling and almost back to himself. He's such a trooper!!!!
So we went for our pre-op clearance for his trach removal and got the final ok!! YAY!! (As long as he doesn't get sick before then..*knock on wood* because last time he did.) He's going to be in-patient this time and will have to stay in the hospital for about three days. They're going to put a smaller trach in and then plug it up and keep him on the monitors and make sure he does alright, then they're going to remove it completely if there are no problems (I mean, when there are no problems!). They're also going to remove his port this time around, which should make therapy a little more comfortable. Everything is set to go on Wednesday, and it looks like we'll be leaving the hospital and heading straight for Memphis so the boys can meet their grandfather for the first time. We're all very excited and can't wait for the long weekend.
Well I'm sure there's so much more I forgot, but now that I'm back home, I'll have plenty of time for regular updates again. You know, until we go back in the hospital, then go out of town again.. :)
When Lucas gets his trach out ... we'll be able to take a trip and just bring clothes. No machines, no tons of medical supplies, no special soaps and water...I could keep going but I'll stop! I should've taken a picture of how packed our car gets for trips, but never again!
Days now people, days!! WOOHOOO! I'm so happy for you my baby, I'm proud of how great you've done this past year and hope you're many years to come go by much more smoothly. I love you Lucas! Or as Joshua would say, "I love you Bookie Wookie!" Love you too Joshua!
June 14, 2010
Getting Back to Normal
Yesterday Lucas woke up with a smile and started playing with some of his toys. I took advantage of his awesome behavior and we took a family trip to the mall because I had to get a few last minute things to prepare for vacation later this week! Well of course he did great, and most of us even had fun! (Daddy hollered the whole time for us to hurry up...MEN!)
Well on the way home from the mall, we found out Ryder (my Godson) and his travel baseball team were going to the championship game for a tournament they played in so we stopped to watch it. The game was great, but boy was it hot! I stripped the little guy down to his diaper and he was still sweating a bit at times! I even had to take Joshua's shirt off because he ran up and down the side of the filed, the ENTIRE time, yelling "baseball!!" Towards the end of the game, one of the coaches gave him a baseball, and instead of thanking him he tells him, "I want baseball bat!" I think he's gonna play professional one day. And just in case you're wondering, of course Ryder's team won the championship...Go Bandits!
This morning Lucas woke up in a great mood! He even stayed up a little bit after breakfast before going down for his nap. He didn't sleep all day like he had been lately, and when he was up from his naps, he was playing A LOT! He even sat up a bit today and was rolling over like crazy. I only gave him the ibuprofen today, no tylenol with codene. He seemed to be a little bothered when it was almost time to take the next dose, but overall he's almost in no pain anymore!
We canceled therapy for the week and are just relaxing and preparing for our trip. We can't wait for our trip to Tennessee! And hopefully it's not near as hot as it's been down here!
I almost forgot, since the doctor didn't call me back last week, I went ahead and called again to schedule the removal of the trach! =-D At first she told me we could do it on June 24th, the day after we get home from vacation. Can you believe it? That soon. Well it's not going to happen then because Josh won't be in town that weekend and he'd have a stroke if we took it out when he's not here. So the date is tentatively set for June 30th. Hopefully all goes well because we have plans to go out of town that weekend. The doc is supposed to call me and let me know if we can still take our trip and if so, that will be the date. If not, it will probably happen the next week. But still, either way the trach is coming out SOON!! That's weeks guys; weeks, not months, not a year or two, weeks.. that's almost like days.. WHOA!
When Lucas gets his trach out...we're going swimming! (Heck, we may even buy a pool!) ;)
Well on the way home from the mall, we found out Ryder (my Godson) and his travel baseball team were going to the championship game for a tournament they played in so we stopped to watch it. The game was great, but boy was it hot! I stripped the little guy down to his diaper and he was still sweating a bit at times! I even had to take Joshua's shirt off because he ran up and down the side of the filed, the ENTIRE time, yelling "baseball!!" Towards the end of the game, one of the coaches gave him a baseball, and instead of thanking him he tells him, "I want baseball bat!" I think he's gonna play professional one day. And just in case you're wondering, of course Ryder's team won the championship...Go Bandits!
This morning Lucas woke up in a great mood! He even stayed up a little bit after breakfast before going down for his nap. He didn't sleep all day like he had been lately, and when he was up from his naps, he was playing A LOT! He even sat up a bit today and was rolling over like crazy. I only gave him the ibuprofen today, no tylenol with codene. He seemed to be a little bothered when it was almost time to take the next dose, but overall he's almost in no pain anymore!
We canceled therapy for the week and are just relaxing and preparing for our trip. We can't wait for our trip to Tennessee! And hopefully it's not near as hot as it's been down here!
I almost forgot, since the doctor didn't call me back last week, I went ahead and called again to schedule the removal of the trach! =-D At first she told me we could do it on June 24th, the day after we get home from vacation. Can you believe it? That soon. Well it's not going to happen then because Josh won't be in town that weekend and he'd have a stroke if we took it out when he's not here. So the date is tentatively set for June 30th. Hopefully all goes well because we have plans to go out of town that weekend. The doc is supposed to call me and let me know if we can still take our trip and if so, that will be the date. If not, it will probably happen the next week. But still, either way the trach is coming out SOON!! That's weeks guys; weeks, not months, not a year or two, weeks.. that's almost like days.. WHOA!
When Lucas gets his trach out...we're going swimming! (Heck, we may even buy a pool!) ;)
June 12, 2010
Surgery
The night before surgery day wasn't a great one. I couldn't sleep, I kept tossing and turning all night long, and the short amounts of time I did sleep, I kept dreaming about the surgery and waking myself up. I got up a few minutes before the alarm went off at 4 a.m. and made myself get out of bed a few minutes later. I got the little guy up at 4:30 and he was all bright eyed and bushy tailed! He almost woke his Granny up because he was talking pretty loud during breakfast. He did great on the ride to the hospital, sat straight up in his chair to watch Mickey Mouse.
We got to the hospital for 5:30, checked in and was brought to the back by 6:00. Then the waiting game started. He was still in a really good mood and even tried rolling off the bed a few times. Of course, the Disney Channel was on so he was in Heaven! He was just starting to get tired at around 7:00 when they came give him some relaxer (similar to Zanex) and before we knew it, his eyes were rolling around he was very very happy! hehe You hate to laugh, but it really was kinda funny. They finally took him back around 8:00 and before we knew it, the Orthopedic doc came out and told us he did a great job, but they had to put four pins in his foot instead of just three. Then not long after the anesthesiologist came out and said he was doing great still and then the Urologist said he was done. The anesthesiologist came back and asked us permission to do a block on him which is basically like an epidural. It numbs everything from waist down so it would cover pain management for 8-10 hours for both areas. He said Lucas probably wouldn't be able to move his legs for a couple of hours.
The doc took us back to recovery and the little guy was still sleeping. The nurses were all hovering around him because he's just so cute! (If we don't get told a hundred times, we don't get told at old. But really, we don't mind, we know he's a cutie. I say he looks like me, even though he clearly looks like Josh! LOL) Anyways, he woke up a few minutes after we got back there and was moving his legs like ten minutes later!! The anesthesiologist came back and said that they had to remove the trach and put a special tube to get the medicine in and have him breathe at the same time. (Since he's had his trach so long and his airways are pretty much healed, some of the air was coming right back out of the hole from around the trach tube.) Well he said in all the times he's done this, he's NEVER seen a child suck a pacifier when doing this and keep sucking it during the entire surgery!
The orthopedic doc said he did so well during surgery that we didn't have to stay the night after all! That was very exciting! And all he had to do was urinate and we were free to go home. But of course, it took him over two hours to potty!!!
The doc put a "soft" cast on his foot in the operating room so I didn't get to see the rods sticking out of his foot. But we do have to go change the cast to the hard cast on Wednesday so I will see if I can take some pictures then. I got some good shots of his foot before and will put those up soon too so you can see the before and after pictures later. I got a sneak peek of the x-rays and got to see a picture of the rods in his foot--pretty neat if you like that sort of thing! His little man parts are a bit bruised, but not near as swollen as I thought they were going to be. We've got frozen peas that we have to put on it during the day and it seems to be working. He was in a lot of pain yesterday (I don't think the block worked) and a good bit this morning, but he seemed to be doing much better this evening. He's taking Ibuprofen and Tylenol with codene around the clock so that helps a lot! When he takes the Tylenol, he's completely out of it. His eyes are half closed and he can't stay up, but it helps him get some rest. He must be feeling a a tad bit better because he's sleeping on his belly right now and has rolled over a few times tonight, so that's a good sign!
About the seizures...the neurologist said that she doesn't think what he's been doing with his eyes is a seizure. Since he's "Lucas" when he wakes up--smiling, cooing, laughing, trying to talk--that means he wasn't having a seizure. Only thing is she didn't say what it was. So I guess we keep watching it for now and hopefully it goes away. Maybe it is just the REM sleep (*fingers crossed*) but I guess we'll probably end up having to do another test or see another specialist to find out! I swear, we live at the doctor! And in case you're wondering, I love the doc so much and was so into conversation that I forgot to bitch about the nurses not calling me back. I swear, I'm too easy on this people. But I am starting to get annoyed that EVERY time I see her, she likes to remind me of how bad he looked when he was little. And if there's a resident in the room, which there has been most of the time lately, she has to describe it in detail. Then she wants me to describe it as well. She even asked me if I had a baby picture of him with me, and when I showed her the one I had, she said it wasn't "bad" enough! I'm thinking about putting a flip book of him together. Showing him through his different stages...the beginning, the bad, the worst, and then on the way to healthy. I do think it's about time I share these pictures with everyone, so I will try to get a page of old pictures up here soon for you guys.
When Lucas gets his trach out...we'll have quiet nights. No more loud machines keeping us up!
Joshua story of the day...Daddy and Joshua went to the Zephyr's game tonight and they came home with two baseball bats. Joshua came in the door swinging. He's so cute. I can't wait for him to be old enough to play t-ball. And hopefully his brother can play one day too!
We got to the hospital for 5:30, checked in and was brought to the back by 6:00. Then the waiting game started. He was still in a really good mood and even tried rolling off the bed a few times. Of course, the Disney Channel was on so he was in Heaven! He was just starting to get tired at around 7:00 when they came give him some relaxer (similar to Zanex) and before we knew it, his eyes were rolling around he was very very happy! hehe You hate to laugh, but it really was kinda funny. They finally took him back around 8:00 and before we knew it, the Orthopedic doc came out and told us he did a great job, but they had to put four pins in his foot instead of just three. Then not long after the anesthesiologist came out and said he was doing great still and then the Urologist said he was done. The anesthesiologist came back and asked us permission to do a block on him which is basically like an epidural. It numbs everything from waist down so it would cover pain management for 8-10 hours for both areas. He said Lucas probably wouldn't be able to move his legs for a couple of hours.
The doc took us back to recovery and the little guy was still sleeping. The nurses were all hovering around him because he's just so cute! (If we don't get told a hundred times, we don't get told at old. But really, we don't mind, we know he's a cutie. I say he looks like me, even though he clearly looks like Josh! LOL) Anyways, he woke up a few minutes after we got back there and was moving his legs like ten minutes later!! The anesthesiologist came back and said that they had to remove the trach and put a special tube to get the medicine in and have him breathe at the same time. (Since he's had his trach so long and his airways are pretty much healed, some of the air was coming right back out of the hole from around the trach tube.) Well he said in all the times he's done this, he's NEVER seen a child suck a pacifier when doing this and keep sucking it during the entire surgery!
The orthopedic doc said he did so well during surgery that we didn't have to stay the night after all! That was very exciting! And all he had to do was urinate and we were free to go home. But of course, it took him over two hours to potty!!!
The doc put a "soft" cast on his foot in the operating room so I didn't get to see the rods sticking out of his foot. But we do have to go change the cast to the hard cast on Wednesday so I will see if I can take some pictures then. I got some good shots of his foot before and will put those up soon too so you can see the before and after pictures later. I got a sneak peek of the x-rays and got to see a picture of the rods in his foot--pretty neat if you like that sort of thing! His little man parts are a bit bruised, but not near as swollen as I thought they were going to be. We've got frozen peas that we have to put on it during the day and it seems to be working. He was in a lot of pain yesterday (I don't think the block worked) and a good bit this morning, but he seemed to be doing much better this evening. He's taking Ibuprofen and Tylenol with codene around the clock so that helps a lot! When he takes the Tylenol, he's completely out of it. His eyes are half closed and he can't stay up, but it helps him get some rest. He must be feeling a a tad bit better because he's sleeping on his belly right now and has rolled over a few times tonight, so that's a good sign!
About the seizures...the neurologist said that she doesn't think what he's been doing with his eyes is a seizure. Since he's "Lucas" when he wakes up--smiling, cooing, laughing, trying to talk--that means he wasn't having a seizure. Only thing is she didn't say what it was. So I guess we keep watching it for now and hopefully it goes away. Maybe it is just the REM sleep (*fingers crossed*) but I guess we'll probably end up having to do another test or see another specialist to find out! I swear, we live at the doctor! And in case you're wondering, I love the doc so much and was so into conversation that I forgot to bitch about the nurses not calling me back. I swear, I'm too easy on this people. But I am starting to get annoyed that EVERY time I see her, she likes to remind me of how bad he looked when he was little. And if there's a resident in the room, which there has been most of the time lately, she has to describe it in detail. Then she wants me to describe it as well. She even asked me if I had a baby picture of him with me, and when I showed her the one I had, she said it wasn't "bad" enough! I'm thinking about putting a flip book of him together. Showing him through his different stages...the beginning, the bad, the worst, and then on the way to healthy. I do think it's about time I share these pictures with everyone, so I will try to get a page of old pictures up here soon for you guys.
When Lucas gets his trach out...we'll have quiet nights. No more loud machines keeping us up!
Joshua story of the day...Daddy and Joshua went to the Zephyr's game tonight and they came home with two baseball bats. Joshua came in the door swinging. He's so cute. I can't wait for him to be old enough to play t-ball. And hopefully his brother can play one day too!
June 11, 2010
Exhausted
Hey guys. I was looking forward to some time to write down everything that happened today and let you all know how surgery went, but now that it's time, I can't find the energy to do it. So please know that Lucas did great today. So good in fact, that they went ahead and released him to come home instead of staying in the hospital overnight. He's still in a good bit of pain; more so uncomfortable every time he moves. But, he's getting plenty of rest and has plenty of pain medicine to help make him more comfortable. So until later, thank you all for your thoughts and prayers today! We love you and we know you love Lucas!
BTW, when Lucas gets his trach out...his room won't look so much like a hospital room and more like a babies room! (I had to...still so excited!)
Goodnight!
BTW, when Lucas gets his trach out...his room won't look so much like a hospital room and more like a babies room! (I had to...still so excited!)
Goodnight!
June 9, 2010
Temper Tantrums
Well I have been blessed not to have many temper tantrums from Lucas, especially since Joshua has so many, so often. And you may think that since I can't really hear Lucas, that his tantrums can't be that bad. If you think that's true, then you're wrong. Don't get me wrong, he's not near as loud as he could be, but he sure does make himself known! But I have to be honest, most of the time I'm just so happy to hear him at all, (even crying) that I just stop, stare and smile. I'll even let him cry a tad big longer just to listen.
So surgery day is right around the corner. I'm getting a tad bit nervous, but more nervous that something will go wrong and we won't be able to get the trach out for a while. I am worried about the pain also. I'm canceling all his therapy for next week so he can have a little extra time to recover. And the epidural should help a lot, but how comfortable can steel rods in your foot be? Not to mention having a hot, sweaty cast over that! He's been a trooper through everything so far, and barely noticed the casting the last time around, so we'll just pray for the best! I just hope he's back to his happy 'ole self by Wednesday when we leave for Tennessee. We are so excited to get away for the week. We're going swimming, going to the mountains and even to Dollywood! And we'll be with all of the cousins so Joshua should be thoroughly entertained.
I'll try to write a little something before the surgery, but if not, please just keep us in your thoughts and prayers. I'll try to update this as soon as he gets out of surgery to let you know how everything went.
When Lucas' trach comes out, we'll...go sleep at granny's house for the night!
Funny Joshua story of the day: Yesterday was bath day. Joshua got his bath first thing in the morning, but we were running late (like usual) so Lucas didn't bathe until last night. Joshua felt especially dirty yesterday so he decided to give himself a bath after Lucas got out. And he was so nice, he got in the tub wearing his pajamas so I wouldn't have to wash them today! (Now do you see why I'm getting gray hair?)
So surgery day is right around the corner. I'm getting a tad bit nervous, but more nervous that something will go wrong and we won't be able to get the trach out for a while. I am worried about the pain also. I'm canceling all his therapy for next week so he can have a little extra time to recover. And the epidural should help a lot, but how comfortable can steel rods in your foot be? Not to mention having a hot, sweaty cast over that! He's been a trooper through everything so far, and barely noticed the casting the last time around, so we'll just pray for the best! I just hope he's back to his happy 'ole self by Wednesday when we leave for Tennessee. We are so excited to get away for the week. We're going swimming, going to the mountains and even to Dollywood! And we'll be with all of the cousins so Joshua should be thoroughly entertained.
I'll try to write a little something before the surgery, but if not, please just keep us in your thoughts and prayers. I'll try to update this as soon as he gets out of surgery to let you know how everything went.
When Lucas' trach comes out, we'll...go sleep at granny's house for the night!
Funny Joshua story of the day: Yesterday was bath day. Joshua got his bath first thing in the morning, but we were running late (like usual) so Lucas didn't bathe until last night. Joshua felt especially dirty yesterday so he decided to give himself a bath after Lucas got out. And he was so nice, he got in the tub wearing his pajamas so I wouldn't have to wash them today! (Now do you see why I'm getting gray hair?)
June 7, 2010
The Start of a Long Week
So, we had a nice, relaxing, quiet Sunday. We didn't go anywhere, and barely made it out of the house at all! My poor man was just not himself Saturday or Sunday. Finally figured out he was constipated Sunday morning, gave him an enema and he was a whole different baby after that! We were all tired from the busy end of the week that we all just stayed in and watched movies all day. Gotta love them days!
Today, however, the beginning of the long week starts. Most of you know that Lucas was supposed to have surgery a couple of Monday's ago, but ended up getting sick on the Friday before and could not have surgery. Thank God it was just a mild infection in the trach and we caught it early, so with some antibiotics, breathing treatments and a little bit of oxygen, he was back to his happy self by Monday! We got the ok to reschedule and surgery is now going to be this Friday! For those of you who don't know, we're going to be correcting his foot and doing one other procedure at the same time. Little guy is going to have an epidural for pain management so we'll have to stay in the hospital over night. His little foot is going to have three steel rods protruding from his skin and then a cast over that. (Sounds gross, I know!) The doc says in 3-4 weeks the rods are going to fall out and the foot should be fixed. They sure can do a lot with medicine these days! It already looks so much better than when he was born with just the casting and the special boot he wears at night!
I got the "go" for surgery this morning from his pediatrician. I don't know if I told you yet, but we LOVE our pediatrician. After looking him over, she started playing with him and was trying to get him to sit up for her (but he really didn't do it, he's still unsure of doctors and nurses; I swear they can tell already). Then she picked him up and gave him the biggest hug and told him how proud she was of how far he'd come. It was too sweet, I almost teared up watching her tear up at him; you can really tell how proud she is of him. (And so am I little guy!)
So, I think Lucas may be having seizures again! :( I really hope that's not the case, but I'm really not sure this time around. His first three seizures (when he was a month old) were more like twitches. His left arm and leg just came up and down, he looked like he was having the hiccups. Then the seizure he had over Thanksgiving was more like a "jackknife seizure" where his body basically folded in on itself. One night while checking on him before I went to bed, I found his eyes jumping around and he just started spitting all kinds of stuff out of his mouth. He did the same thing to me the other day when he was asleep and I was taking him out of the car and putting him in the bed. I'm not completely sure that these were seizures and not just his REM sleep, but I called the doctor to be sure. You would think that the third time I called them and told them I thought he was having a seizure they would've called me back, but no, I still haven't heard from them. I am going to give them a piece of my mind when I go there on Thursday. (This isn't the first time they've ignored my calls!)
I already tried to schedule the next surgery to take the trach out. I feel like I'm rushing it, I hope he's ready, I know we are. I could probably put up one thing everyday that we can do without the trach from now until the trach comes out. So for today..
When Lucas' trach comes out, I can't wait to ... scrub the back of his neck!
Well I should be picking up the toys in the living room, but instead I'm going to bed. This mommy stuff is tiring! :)
BTW, funny Joshua incident of the day: I hear him coming down the hall half crying and calling out for me. I come around the corner and he's basically holding himself up on the couch trying to get to me. I look down and he says, I want my pants mommy. He had tried to put his big boy underwear on, but had both legs in one hole and couldn't get them off! I took them off and just about begged me to put them back on. I think he may be just about ready to potty train. Wish me luck! If I thought I was stressed before, just wait till we start potty training again. To say it went bad the first time around would be an understatement! This just might have to wait till after the trach comes out. OMG, the trach is coming out soon! I can't wait.
Today, however, the beginning of the long week starts. Most of you know that Lucas was supposed to have surgery a couple of Monday's ago, but ended up getting sick on the Friday before and could not have surgery. Thank God it was just a mild infection in the trach and we caught it early, so with some antibiotics, breathing treatments and a little bit of oxygen, he was back to his happy self by Monday! We got the ok to reschedule and surgery is now going to be this Friday! For those of you who don't know, we're going to be correcting his foot and doing one other procedure at the same time. Little guy is going to have an epidural for pain management so we'll have to stay in the hospital over night. His little foot is going to have three steel rods protruding from his skin and then a cast over that. (Sounds gross, I know!) The doc says in 3-4 weeks the rods are going to fall out and the foot should be fixed. They sure can do a lot with medicine these days! It already looks so much better than when he was born with just the casting and the special boot he wears at night!
I got the "go" for surgery this morning from his pediatrician. I don't know if I told you yet, but we LOVE our pediatrician. After looking him over, she started playing with him and was trying to get him to sit up for her (but he really didn't do it, he's still unsure of doctors and nurses; I swear they can tell already). Then she picked him up and gave him the biggest hug and told him how proud she was of how far he'd come. It was too sweet, I almost teared up watching her tear up at him; you can really tell how proud she is of him. (And so am I little guy!)
So, I think Lucas may be having seizures again! :( I really hope that's not the case, but I'm really not sure this time around. His first three seizures (when he was a month old) were more like twitches. His left arm and leg just came up and down, he looked like he was having the hiccups. Then the seizure he had over Thanksgiving was more like a "jackknife seizure" where his body basically folded in on itself. One night while checking on him before I went to bed, I found his eyes jumping around and he just started spitting all kinds of stuff out of his mouth. He did the same thing to me the other day when he was asleep and I was taking him out of the car and putting him in the bed. I'm not completely sure that these were seizures and not just his REM sleep, but I called the doctor to be sure. You would think that the third time I called them and told them I thought he was having a seizure they would've called me back, but no, I still haven't heard from them. I am going to give them a piece of my mind when I go there on Thursday. (This isn't the first time they've ignored my calls!)
I already tried to schedule the next surgery to take the trach out. I feel like I'm rushing it, I hope he's ready, I know we are. I could probably put up one thing everyday that we can do without the trach from now until the trach comes out. So for today..
When Lucas' trach comes out, I can't wait to ... scrub the back of his neck!
Well I should be picking up the toys in the living room, but instead I'm going to bed. This mommy stuff is tiring! :)
BTW, funny Joshua incident of the day: I hear him coming down the hall half crying and calling out for me. I come around the corner and he's basically holding himself up on the couch trying to get to me. I look down and he says, I want my pants mommy. He had tried to put his big boy underwear on, but had both legs in one hole and couldn't get them off! I took them off and just about begged me to put them back on. I think he may be just about ready to potty train. Wish me luck! If I thought I was stressed before, just wait till we start potty training again. To say it went bad the first time around would be an understatement! This just might have to wait till after the trach comes out. OMG, the trach is coming out soon! I can't wait.
June 5, 2010
George and Kayla's Wedding
So tonight will be a quickie because I'm super tired. Today, KK and George got married. The wedding was absolutely beautiful. Little Lukie had to come with us because we still can't get a babysitter for him just yet. He had a blast making eyes at the ladies in the pew behind us in Church. And I only had to get up and leave once to suction him! YEAH! At the reception, however, he did not have as good a time. He was not really sure about all the people and the loud music, and when he finally got used to that, he kept getting bad stomach cramps. I finally got him to sleep when Grannie tried to dance with us and woke him up. But while he was sleeping peacefully in my arms, I heard this beautiful song, "I Hope You Dance" by LeAnn Womack. So my Little Lukie, "I hope you never lose your sense of wonder...May you never take one single breath for granted...Promise me that you'll give faith a fighting chance...Give the heavens above more than just a passing glance; and when you get the choice to sit out or dance; I hope you dance" I love you Luke-Star!
Congrats George and KK
Congrats George and KK
June 4, 2010
Bath Day = Busy Day!
We started off the day a little behind schedule. The boys' cousins Bryleigh and Tyler slept over last night so we did something we NEVER get to do by ourselves...we went out and got doughnuts for breakfast! YUMMY! I had to wake Lucas up at 9:00 to put him in the car so we could go get them, but he was in a very good mood especially for being woken up and taken right out! If only he'd eat the doughnuts. Hopefully soon.
After everyone finished eating, it was bath time! After bathing Joshua and Bryleigh, it was Lucas' turn. We got our new bath chair in a couple weeks ago, but it's so big that he and Joshua can't really take a bath together anymore. Also, the tub has to be almost completely filled with water, which is very scary. We have to be very careful not to get any water around his neck or the opening of the trach because it will go directly into his lungs and we'll be back in the hospital again. He really loves bath time, but until we got the chair, he was pretty much in and out because he thinks it's funny to slide into the water. He really enjoys the water and I can not wait for him to be able to play in the tub and go swimming without getting so stressed out!
Think that's the end of bath time? Think again. By the end of the bath, he's usually ready to be suctioned again from moving around so much. Then we have to clean the trach and his g tube. I have to use sterile q-tips (which are a pain in the rear to find), sterile water and dial antimicrobial soap (also pain in the rear to find--thank God the hospital gave me a full bottle or I'd be up a creek). Some people only change trachs once a month, but we have to change Lucas' out one to two times a week. He produces a lot more secretions than the average trach patient. We never figured out why, but it was so bad in the beginning, we'd have to suction him 10 times a day some days. So if the trach needs-a-changing, sometimes we'll do this now also, if not, we have to change the ties that hold the trach in. He's been drooling so much lately, he's got a constant rash on the skin around the trach hole so we have to use some prescription cream to soothe the skin--you can't just use anything around there. Bath time for Lucas usually takes around 30-45 minutes on a good day. If he's fussing or squirming a lot, almost an hour. Usually by the time we're finished with a bath, it's almost time to get lunch together. Then before you know it, it's after 1:00 and time for a nap.
Nap time is my "me time". This is when I get to clean the house, pick up dishes, take my bath, cut the grass and occasionally take a break. It works out good when they take naps at the same time, but when this doesn't happen, things just don't get done. You have to just not stress over it, because there's probably been a handful of days out of the year when I actually got to accomplish everything I need to. Oh well, I'd rather spend the time playing with my babies anyway! Speaking of, nap time is almost up and there's still dishes in the sink! ;)
After everyone finished eating, it was bath time! After bathing Joshua and Bryleigh, it was Lucas' turn. We got our new bath chair in a couple weeks ago, but it's so big that he and Joshua can't really take a bath together anymore. Also, the tub has to be almost completely filled with water, which is very scary. We have to be very careful not to get any water around his neck or the opening of the trach because it will go directly into his lungs and we'll be back in the hospital again. He really loves bath time, but until we got the chair, he was pretty much in and out because he thinks it's funny to slide into the water. He really enjoys the water and I can not wait for him to be able to play in the tub and go swimming without getting so stressed out!
Think that's the end of bath time? Think again. By the end of the bath, he's usually ready to be suctioned again from moving around so much. Then we have to clean the trach and his g tube. I have to use sterile q-tips (which are a pain in the rear to find), sterile water and dial antimicrobial soap (also pain in the rear to find--thank God the hospital gave me a full bottle or I'd be up a creek). Some people only change trachs once a month, but we have to change Lucas' out one to two times a week. He produces a lot more secretions than the average trach patient. We never figured out why, but it was so bad in the beginning, we'd have to suction him 10 times a day some days. So if the trach needs-a-changing, sometimes we'll do this now also, if not, we have to change the ties that hold the trach in. He's been drooling so much lately, he's got a constant rash on the skin around the trach hole so we have to use some prescription cream to soothe the skin--you can't just use anything around there. Bath time for Lucas usually takes around 30-45 minutes on a good day. If he's fussing or squirming a lot, almost an hour. Usually by the time we're finished with a bath, it's almost time to get lunch together. Then before you know it, it's after 1:00 and time for a nap.
Nap time is my "me time". This is when I get to clean the house, pick up dishes, take my bath, cut the grass and occasionally take a break. It works out good when they take naps at the same time, but when this doesn't happen, things just don't get done. You have to just not stress over it, because there's probably been a handful of days out of the year when I actually got to accomplish everything I need to. Oh well, I'd rather spend the time playing with my babies anyway! Speaking of, nap time is almost up and there's still dishes in the sink! ;)
My cool new bath chair
June 2, 2010
Out and About
A lot of people commend me on not being afraid to take Lucas to different places. We've been to birthday parties, the zoo, ball games and even Disney World (my favorite!). Pretty much anywhere outside with people spread out, I'll take him there. Well, my answer to this is...would you like being stuck in the house all day, every day for the majority of your life? Heck no! Lucas is very physically handicapable ;) but his mind is perfectly normal. It's sort of like being trapped inside of a body that doesn't completely work. He can't sit up on his own and when he gets tired it gets hard for him to hold his head up. But he still likes to have a good time. I understand that it can be weird to see us with all of our machines going off, but really, it's not that bad. So don't feel the need to make sad faces at us, don't pity us, because really we're happy, and please don't stare and gawk at us! If you have a question, come ask! I love it when kids see him because they're not afraid to come right out and ask what it is. And when I tell him it's his "special nose" almost every time they say, oh ok and drop it. And parents, don't come running to pull your kid away from him, he's not contagious!
Anyway, enough ranting! ;)
Last night was cool enough for us to go see the boy cousins baseball games and boy did we have a good time. Both teams won, all three boys played great and Joshua loved running back and forth in between the fields. (Although dad and I did not like running to catch him!) We can't wait for another "cool" evening to get out of the house again. Hopefully Tennessee won't be too hot for our trip in a couple of weeks, and we can go to Dollywood. We can't wait!
BTW, surgery is back on! I think the date will be June 11th, which means, as soon as we get home from Tennessee, that trach is coming out!
Anyway, enough ranting! ;)
Last night was cool enough for us to go see the boy cousins baseball games and boy did we have a good time. Both teams won, all three boys played great and Joshua loved running back and forth in between the fields. (Although dad and I did not like running to catch him!) We can't wait for another "cool" evening to get out of the house again. Hopefully Tennessee won't be too hot for our trip in a couple of weeks, and we can go to Dollywood. We can't wait!
BTW, surgery is back on! I think the date will be June 11th, which means, as soon as we get home from Tennessee, that trach is coming out!
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