Family is Forever
June 2013
Sunday, May 31, 2009
Surgery Time for June 1
We'll again here we are another pre surgery weekend. We found out we have to be at Children's at 1:45pm tomorrow the 1st. Scheduled to be in surgery at 3pm. And now it may take a bit longer because we just got off the phone with Dr Estes who is one of Skylers Surgeons and told him that Skyler's other side is acting weird now. (This kid is going to land him self a nice spot in the hospital until this thing is completly finished if hes not careful!!) It's loose and wobbly and when we turn the screw it has no resistance. UGH! So the Dr. mentioned he would take a look tomrrow at both sides. So that in a week we don't have a check up only to find out the OTHER side is broken...could you imagine!!??!
I told the dr Skyler was in need of a slow down pill....he laughed, I really wasn't joking tho :P
He had mentioned something about a flexiable arm distractor...?? I dunno but sounds $$ LOL He said they aren't used to this happening so they will try and get it so it wont happen again. PHEW, thank good ness right?
Anyways. We will keep you posted. The nice thing about the surgery times tomorrow is Skyler can actually have breakfast! So I dont have to fight off a cranky hungry 6 year old for to long.
Please keep him in your thoughts for a quick stay and speedy recovery! (again.)
all our love
Casie Mike Skyler and Seth
Friday, May 29, 2009
MAY 4 2009
MAY 21 2009
MAY 28 2009
As you can see the top photo is Skyler 11 days before surgery a frontal view of his jaw, the the 2nd picture is Skyler a week ago, the dr was very happy to see equal amounts of growth between the spots in the back above the bars there are gaps you can see tho the bone is not visible because it is not hardened yet. And on the last picture on the left side you can see a great amount of space and obvious signs that the distraction is working. Unfortunatly not the case for the right side. It is almost exactly the same as a week ago. Hasnt moved at all. So thats why his jaw looks lopsided. You can even tell how much its affected the placement of his teeth right now. Look at the first pic and the last pic everything has moved over greatly.
Skylers surgery is Monday the 1st of June they will be giving us exact times to be down there but we are told his surery will be at 3pm, and should be another 2 hours and will be an over night stay. It's just crazy. We were so confident that things were going to go so well with this, and that it was the right decision and we would see no problems. But we should know by now that nothing comes flawless. I guess I wouldn't be so bummed except the dr. seemed so bummed and baffled on to why this happened. And then by the x ray he couldnt see the problem.
Skylers surgery is Monday the 1st of June they will be giving us exact times to be down there but we are told his surery will be at 3pm, and should be another 2 hours and will be an over night stay. It's just crazy. We were so confident that things were going to go so well with this, and that it was the right decision and we would see no problems. But we should know by now that nothing comes flawless. I guess I wouldn't be so bummed except the dr. seemed so bummed and baffled on to why this happened. And then by the x ray he couldnt see the problem.
Like I told the dr tho, Skyler has never done things the easy way, why start now.
Any how, we will make it over this bump. It might take a little longer than first planned, but there's gotta be a reason behind it somewhere.
We are off to spend the day in the beautiful sunshine now, hope everyone enjoys the WHOLE weekend!! Its so nice to actaully see seasons right?
We are off to spend the day in the beautiful sunshine now, hope everyone enjoys the WHOLE weekend!! Its so nice to actaully see seasons right?
All our love,
Mike Casie and the boys
Mike Casie and the boys
Thursday, May 28, 2009
A Bit of A Set Back
Over the past few days Skyler has seemed a bit more sensitive to turning the screws each morning and night. And the right side had seemed to be longer than the left. I voiced our concerns at our visit today down at the Oral surgeon and x rays confirmed that something is wrong with the right side. It's not progressing at all since last weeks xrays. It is much farther behind than the left and so it looks like his jaw is crooked now.
They aren't sure HOW this happened, but will be taking Skyler back into the OR on Monday or Tuesday to find out what exactly went on and if they will be able to fix it to continue the process. We will be finishing the last week and a half of the other side as planned, and the right side will hopefully follow but this will set us back 3 weeks at most. So there goes the last few weeks of school and adds another month or month and half of healing once the actual turning is complete. Its a bummer, we are sad, and confused on what happened, he was doing great! I even was planning on going back to work on Monday because our wonderful daycare provider has done a trial run with him and is comfortable caring for him through the day. But we will put this on hold again, and try to see what we can do to make it work. Dr Egbert was pretty bummed and confused on to why this happened.
I will post pics tomorrow.
Thanks for checkin in on us
The Caughlins
They aren't sure HOW this happened, but will be taking Skyler back into the OR on Monday or Tuesday to find out what exactly went on and if they will be able to fix it to continue the process. We will be finishing the last week and a half of the other side as planned, and the right side will hopefully follow but this will set us back 3 weeks at most. So there goes the last few weeks of school and adds another month or month and half of healing once the actual turning is complete. Its a bummer, we are sad, and confused on what happened, he was doing great! I even was planning on going back to work on Monday because our wonderful daycare provider has done a trial run with him and is comfortable caring for him through the day. But we will put this on hold again, and try to see what we can do to make it work. Dr Egbert was pretty bummed and confused on to why this happened.
I will post pics tomorrow.
Thanks for checkin in on us
The Caughlins
Thursday, May 21, 2009
Our First Post Op Appt
If you didn't think so then, I will tell you now, Our son Skyler James Caughlin is so remarkably strong it's unbelievable! He's doing so great, it makes a cold look measly. Can you say SUPER MAN!?! Nothing hurts, hes fine he says. I have learned to read him that he's probably telling me the truth too. When he gets cranky, awnry then I know that maybe he's sore. But as of yet today, only his antibiotic.
We were in Seattle today at 9am for some x rays and a check up. The x rays looked rather cool I am going to try and snag some next week to show you. It's crazy to look at, even just at his teeth, where the 6 teeth on the bottom were pulled in Jan, 9 are trying to come threw there!! its like they are all pointed in that direction, one fighting the other to poke through some open space. And in the back of the jaw you can see the space where its made an opening. I didn't get exact measurements today, but its defiantly visible to the eye on x ray.
I have to tell you a funny story. So the dental assistant was cleaning up Skyler's screw sites and asking me questions She says "So mom, how are you cleaning these?" I looked at here and said, "A tooth brush..." She stops a minute looks at me, I think to my self wrong answer? "Well I make him rinse with water after each meal as well" She interrupts and says "I hope its a soft one" I told her it wasn't any different, we weren't told he needed a special brush, THEN I realised she was actually talking about the sites where the distractor comes out...duh. She thought I was a mean mommy!! Could you imagine scrubbing his chin with a tooth brush, HELLO!! LOL
anyways, that's been my excitement for the day. Dr. Egbert said we could increase our turning too 1 full turn twice a day now which is nice, he says it would put us a day ahead or so (it's just a mm tho, can't be too much of an advance right?)
And we go back again next Thursday...Yippee. They will take the rest of the steri stips off if they haven't fallen off by then, so it will look less "surgical"
Talk to you all later, if I don't report much these next few days, no news is good news and I hope you all have a great Memorial Day Weekend! Can you believe its NEARLY summer already!! YEAH!!
~Casie and Family
We were in Seattle today at 9am for some x rays and a check up. The x rays looked rather cool I am going to try and snag some next week to show you. It's crazy to look at, even just at his teeth, where the 6 teeth on the bottom were pulled in Jan, 9 are trying to come threw there!! its like they are all pointed in that direction, one fighting the other to poke through some open space. And in the back of the jaw you can see the space where its made an opening. I didn't get exact measurements today, but its defiantly visible to the eye on x ray.
I have to tell you a funny story. So the dental assistant was cleaning up Skyler's screw sites and asking me questions She says "So mom, how are you cleaning these?" I looked at here and said, "A tooth brush..." She stops a minute looks at me, I think to my self wrong answer? "Well I make him rinse with water after each meal as well" She interrupts and says "I hope its a soft one" I told her it wasn't any different, we weren't told he needed a special brush, THEN I realised she was actually talking about the sites where the distractor comes out...duh. She thought I was a mean mommy!! Could you imagine scrubbing his chin with a tooth brush, HELLO!! LOL
anyways, that's been my excitement for the day. Dr. Egbert said we could increase our turning too 1 full turn twice a day now which is nice, he says it would put us a day ahead or so (it's just a mm tho, can't be too much of an advance right?)
And we go back again next Thursday...Yippee. They will take the rest of the steri stips off if they haven't fallen off by then, so it will look less "surgical"
Talk to you all later, if I don't report much these next few days, no news is good news and I hope you all have a great Memorial Day Weekend! Can you believe its NEARLY summer already!! YEAH!!
~Casie and Family
Wednesday, May 20, 2009
A little update on the Little Man
Skyler's biggest worry isn't that he hurts, or that he can't play rough like he's used to. No it's really terrible, he's not allowed to have cookies, "dr. says so"
He's doing great! We have had no issues "KNOCK ON WOOD" this far. Our first dr appt post op is tomorrow at 9am. I am not sure if they will take any sorts of xrays, and if they did if it would show us any great moves, so we will see.
I think the hardest part is keeping it looking clean. It can get so grody so quick and then it gets red around the sites, and I am so affraid of infection. I swear Mike is irritated by my questions if it looks bad or not, I think I am a natual worrier.
Still managing to keep him entertained with the processed food. The boy even asks for 2nd and 3rds!! I can imagine if they weigh him tomorrow they won't see a drop in numbers. OINK OINK.
Seth is doing fine with all this. He got to go to Gramma Ali's the past few days, he thought that was a real treat! I guess he played in Grampa Day's tack and trailer all day long. What a rug rat. There's been a few times where he's swatted at Skyler's Jaw, not sure why, maybe Skyler's been in his face but we have had to get after him and boy you would think we took his birthday away, poor thing isn't used to being told "no".
But all is well, we are venturing out today to go play at the Children's Museum with some friends. Hoping to settle Skyler down, I thought he was stir crazy in the ICU...HA!
Here are some pics of him from before (i have posted them before but wanted to show you a before and after) surgery and then the ones from today.
oh p.s. Our FAVORITE lunch...Peanut butter and Jelly Soup, if ya want to know how to make it, ask I will tell ya :P
Monday, May 18, 2009
Our First night home
It sure was a shock to be more than halfway down to visit Skyler yesterday and get a phone call from mike saying that Skyler will be discharged before noon! Like I say , that NEVER happens! But there is a first time for everything! He was just doing too good to be cooped up! So after we got all things packed up and learned what we needed to learn, Skyler wanted to go back down to the playground and play! Silly kid! But it was a beautiful day out! So it was ok, nice to be free but also gave us a little glimpse on how our clumbsy child would be and incase in that small time frame something happened we were right there (yea I was nervous!)
It has been nice to be home and have us ALL sleep in our own beds! Skyler did very well yesterday afternoon. We had some errands to run since we had NO food in the house and no food processor, Skyler has taken possession over it, its his and that is that! :P By the time we got home you could tell that the few errands we ran were enough to poop him out, he was leaning his head on the shopping cart and all, so even tho he's got his brave tough face on, it still shows he's not 100% (mom knew that!)
My mom and dad brought over pizza for us, and yes it went threw the processor, and yes Skyler LOVED it *its ok to cringe, I did* He never complained about pain and when it came to bed time and our routine the hardest part was convincing him why a cookie wasn't a good idea as a reward for going potty. But pudding worked just as well.
We were on day 3 of turning the screws, my first time. I'll tell ya the truth, I would be a nurse if it wasn't for the whole giving shots into solid things (people) and turning the screws kinda fell into that category...the resistance was a bit of a shock at first, but he didn't flinch and so that was what made it easier on me.
He slept all night with no issues and was up and going at 7:30 am! And we turned again, with no problems. Scheduled our first post-op appt for this up coming Thursday at 9am. they might be doing x rays to see if they can tell any progress. I think that day I will do some photos, because now we have made some turns but too the naked eye it won't be enough to tell any changes yet.
Still working on nursing so we can have some help around here with care and maybe get things back to "normal" but since Skyler has been doing so well, here and at the hospital, we may have to deal with no nursing support. Our insurance plan doesn't include that option, but we are trying to appeal (story of our lives) and get some 10 hours a day so that I may go back to work. Skyler doesn't belong in day care at this point. I just wish there was an easier way to do it all. I am waiting on a call from our social worker today. I have explained to them that by not wanting to flat out say Yes Skyler is ok at home, doing well no issues, but really I just need a very expensive nanny?? yea, insurance says yea right.
All right enough rambling. :) I know it won't be too long before this is all behind us. June 6th is our last day of turning, and then its 4-8 weeks of healing. Let the count down begin!
~Casie and Family
It has been nice to be home and have us ALL sleep in our own beds! Skyler did very well yesterday afternoon. We had some errands to run since we had NO food in the house and no food processor, Skyler has taken possession over it, its his and that is that! :P By the time we got home you could tell that the few errands we ran were enough to poop him out, he was leaning his head on the shopping cart and all, so even tho he's got his brave tough face on, it still shows he's not 100% (mom knew that!)
My mom and dad brought over pizza for us, and yes it went threw the processor, and yes Skyler LOVED it *its ok to cringe, I did* He never complained about pain and when it came to bed time and our routine the hardest part was convincing him why a cookie wasn't a good idea as a reward for going potty. But pudding worked just as well.
We were on day 3 of turning the screws, my first time. I'll tell ya the truth, I would be a nurse if it wasn't for the whole giving shots into solid things (people) and turning the screws kinda fell into that category...the resistance was a bit of a shock at first, but he didn't flinch and so that was what made it easier on me.
He slept all night with no issues and was up and going at 7:30 am! And we turned again, with no problems. Scheduled our first post-op appt for this up coming Thursday at 9am. they might be doing x rays to see if they can tell any progress. I think that day I will do some photos, because now we have made some turns but too the naked eye it won't be enough to tell any changes yet.
Still working on nursing so we can have some help around here with care and maybe get things back to "normal" but since Skyler has been doing so well, here and at the hospital, we may have to deal with no nursing support. Our insurance plan doesn't include that option, but we are trying to appeal (story of our lives) and get some 10 hours a day so that I may go back to work. Skyler doesn't belong in day care at this point. I just wish there was an easier way to do it all. I am waiting on a call from our social worker today. I have explained to them that by not wanting to flat out say Yes Skyler is ok at home, doing well no issues, but really I just need a very expensive nanny?? yea, insurance says yea right.
All right enough rambling. :) I know it won't be too long before this is all behind us. June 6th is our last day of turning, and then its 4-8 weeks of healing. Let the count down begin!
~Casie and Family
Sunday, May 17, 2009
Saturday, May 16, 2009
Playing Catch-up
Hey!! It's been a busy 24 hours!! Mike and I switched postitions, I had to work today. And they finally moved him last night at 10pm from ICU to the "floor" in the surgical unit.
He had a great day yesterday, despite a few melt downs. He was far too busy to be cooped up in the ICU any longer! The drain tubes came out, all IV's and monitor wires are off (we are now officially allergic or sensitive to the stickies) & We got our communication board, but turns out he can talk/communicate much more than we thought he would be able too (fit #1) He's far too advanced for it, and really only wanted to push buttons like mad, so in the end the machine broke :P and Fit #2, I actually forget what it was about, but it made me sweat. We were happy to see daddy pop in at 4;30 yesterday after 2 movies, 3 walks, 1 trip to the play room and 2 containers of play dough later and finally 15 min of rest. Until the surgeons came into show us how to do our first whole turning of the screws. Piece of cake, Skyler never even flinched when they turned them. More ticked that he woke up to 5 people hovering over him with a screw driver! :P
Gramma Kelli met us down in the cafeteria at 6:50ish with Seth for dinner. Neither Skyler or I had seen Seth since early morning on Wednesday. Guess who the little booger was more excited to see?? Yea, you guessed it, not mom!
Gramma Kelli met us down in the cafeteria at 6:50ish with Seth for dinner. Neither Skyler or I had seen Seth since early morning on Wednesday. Guess who the little booger was more excited to see?? Yea, you guessed it, not mom!
Its ok I guess Seth and I hitched a ride home with Gramma and had a little time to play when we got home. Skyler was all over havin' dad stay the night with him. I got a "toodle loo" pretty much when it was time to leave.
When Seth and I arrived tonight dad was pooped only because they had been on the go since 7am! At the play room doors at 8:45, the play room doesn't open till 9am. And even at 7 at night he was still begging to go there. We took a walk to the play ground, it was a beautiful warm evening. The boys had a great time down there and Skyler even let Seth hitch a ride in the wheel chair on the way back.
He's definitely eating well hes gained almost 2.5lbs since Wednesday, and I don't think that the swelling is hardly any of that! So I can take a sigh of relief that we won't be losing much or any of the 13lbs he's gained in the past 16 months.
Hmm what else, oh did another turn tonight, actually a half turn. Still nothing to it :) makes it nice to know we MIGHT make it threw this in one piece!!
"Rumor has it" that they may send us home tomorrow, but we can't hold our breath, Mike seems to be certain of it tho, yet I still say they don't do that to us on weekends we aren't that lucky. Plus to be honest, I am a little nervous still to come home with all that - maybe I'M not ready..??? I'll sleep on the idea.
Again thanks for all the loves, prayers, emails and comments!! We are so very thankful for the network of family and great friends to keep us lifted when things get crazy nuts over here! Just let it be known you are appreciated
Friday, May 15, 2009
Day 3
All is well but we are STILL stuck in the ICU. There are NO beds in the hospital right now. Sucks for Skyler because hes so bored. He had a great night slept almost all night. His drain tubes should come out today and we will be taught to turn the screws around 3 or 4 this afternoon. Seth was supposed to come down and see us, but since we're still in the ICU we may have to take a field trip to the cafeteria this evening.
He's taking more liquid by mouth so that's a step closer to getting the last IV out. :)
He's taking more liquid by mouth so that's a step closer to getting the last IV out. :)
Above are the pics from yesterday. He was very swollen, he still is, and now he's becoming more aware of the things poking out of his chin, he wants to touch them so badly, I am trying to find a mirror so he can see them.
But I better go, this took alot longer than I wanted it too.
talk to you all later :) thanks again for all the thoughts!!
~Casie and Skyler
Thursday, May 14, 2009
Still hangin' out in the ICU
So you know how I mentioned how inconvenient it was to get something if you forgot it back in the room?? Yea I had a bunch of pics to show ya from today and the card is sitting in the closet...in ICU...so guess I will post them tomorrow. He's definitly much more puffy tonight. Like very Very puffy!! They let us stroll around the ICU for awhile an hour ago he was getting all antsy. We were told we could move down but apparently there are 4 other kiddos ready to head down as well so I guess they are doing "Rock Paper Scissors" on which patient gets to go, but we'll see. Definitely tomorrow tho.
We also are getting a communication board for him tomorrow for the weekend. He's talking ok over his trach but it's hard to understand him sometimes, even for me :)
But I should go I got a killer headache still. I think my excellent sleep is the cause of it all.
Tomorrow should be a big day, moving down to the floor and we also start turning the screws which i informed Mike his proclaimed "gorophobia" won't keep him from this I wont be the only bad guy with a screw driver!! He said, "we'll see"...ugh.
And Mike gets to stay a few nights down here as I work on Saturday.We also are getting a communication board for him tomorrow for the weekend. He's talking ok over his trach but it's hard to understand him sometimes, even for me :)
But I should go I got a killer headache still. I think my excellent sleep is the cause of it all.
Tomorrow should be a big day, moving down to the floor and we also start turning the screws which i informed Mike his proclaimed "gorophobia" won't keep him from this I wont be the only bad guy with a screw driver!! He said, "we'll see"...ugh.
Post pics tomorrow thanks for stopping bye!
~Casie and Skyler
An uneventful night
Compared to all the other kiddos here in the ICU Skyler did very well last night. He had some nausea for a few hours, and his night nurse was getting a little concerned about him not urniating but all turned around by 4am. Skyler FINALLY said he was feeling funny, or he hurt, so hes trying to play tuff guy I think Minimal pain meds is great, but really dude?
He had pudding for breakfast...if he only knew how cool that was! We have already watched Toy Story 2, in the middle of Madagascar 2 and Buzz Lightyear and Woody are sitting at his head of the bead chilin with him! The life of a 6 year old I tell ya.
He looks like hes got a blank stare, because his mouth is somewhat stuck open, so the nurses keep asking me if he looks comfortable or out of it...something we will get used to.
Hes doing great! Hasnt seemed bothered by the screws hanging out of his neck, hes alittle "oozy" from the sights, but nothing a sponge bath and trach care wont fix.
We'll be heading to the floor sometime this afternoon. Which will give him more freedom, and us too! No phones, computers are allowed in his room right now, and we even have to go and ask to see him, talk about crazy, so try not to forget anything when we go in cause its a hassesl to go get it :)
Thanks for all the prayers and emails! We definatly felt them last night as I was prepared to see a more swollen unhappy boy and have somewhat of a crazy night...but all went well :)
All our love
~Casie Mike and Skyler
He had pudding for breakfast...if he only knew how cool that was! We have already watched Toy Story 2, in the middle of Madagascar 2 and Buzz Lightyear and Woody are sitting at his head of the bead chilin with him! The life of a 6 year old I tell ya.
He looks like hes got a blank stare, because his mouth is somewhat stuck open, so the nurses keep asking me if he looks comfortable or out of it...something we will get used to.
Hes doing great! Hasnt seemed bothered by the screws hanging out of his neck, hes alittle "oozy" from the sights, but nothing a sponge bath and trach care wont fix.
We'll be heading to the floor sometime this afternoon. Which will give him more freedom, and us too! No phones, computers are allowed in his room right now, and we even have to go and ask to see him, talk about crazy, so try not to forget anything when we go in cause its a hassesl to go get it :)
Thanks for all the prayers and emails! We definatly felt them last night as I was prepared to see a more swollen unhappy boy and have somewhat of a crazy night...but all went well :)
All our love
~Casie Mike and Skyler
Wednesday, May 13, 2009
Pictures of the Little Man
So I figured it out it was my disk not the computer so here are some pics that I took recently to give you an idea, I have the first ones still to put up, but that will have to be much later. Thanks for thinking of him.
Good night everyone
~Casie and Skyler
He made it!
Well he is done, about an hour ago they called us back into the ICU he's doing great! Ok, he's very drugged, no room to be doing bad. It's very weird every other surgery, no matter the extent he has been up and out of bed and we have spent most our time trying to keep him in bed to rest. This won't be the case tonight.
It looks alot better than I expected, not sure what mike thinks, he's pretty quiet tonight. But there are 2 incisions on each side of jaw line, and then the "screws" stick out at his chin, there will be scars but not severe ones. We should be starting to turn on Friday. it will be 1 and a half turns each day. The dr went ahead and put in a 20mm extractor just incase we need to go that far, but at this point with weekly visits and daily turnings, our days will be busy!
Sounds like the 10 and younger age ban is off only IF the child shows absolutly NO sign of cold fever or cough (duh right?) So hopefully Seth will be able to visit us on Saturday when Skyler gets out of ICU.
I have some pics for here, but the computer I have doesnt like my disk, its not formatted correctly, and I dont think i know how to fix it with out losing all my pics. SO once we get that figured out I will post them, he looks like a chipmunk with fangs....odd i know.
But gotta go Mike probably is going to want to eat before he heads to pick up Seth. He's in Skyler's room right now sleeping, or trying...we have a little teeny weeny roomy, who is also trached, it's going to be a long night between the two heaters and sat monitors....ugh.
~Mike Casie and Skyler
It looks alot better than I expected, not sure what mike thinks, he's pretty quiet tonight. But there are 2 incisions on each side of jaw line, and then the "screws" stick out at his chin, there will be scars but not severe ones. We should be starting to turn on Friday. it will be 1 and a half turns each day. The dr went ahead and put in a 20mm extractor just incase we need to go that far, but at this point with weekly visits and daily turnings, our days will be busy!
Sounds like the 10 and younger age ban is off only IF the child shows absolutly NO sign of cold fever or cough (duh right?) So hopefully Seth will be able to visit us on Saturday when Skyler gets out of ICU.
I have some pics for here, but the computer I have doesnt like my disk, its not formatted correctly, and I dont think i know how to fix it with out losing all my pics. SO once we get that figured out I will post them, he looks like a chipmunk with fangs....odd i know.
But gotta go Mike probably is going to want to eat before he heads to pick up Seth. He's in Skyler's room right now sleeping, or trying...we have a little teeny weeny roomy, who is also trached, it's going to be a long night between the two heaters and sat monitors....ugh.
~Mike Casie and Skyler
Tuesday, May 12, 2009
Skyler's Thoughts today
A "Hospital Vacation" you ask, well I was trying in so many words to explain to Skyler why he wouldn't be seeing Dana for a while or going to school, and the word Vacation came out of my mouth, easy out but I KNOW it was the wrong thing to say :)
Like Mike said, I've ruined the meaning completly!
But even this short video got him all anxious.
Talk to you all tomorrow! Mike and I are starting to get anxious and nervous I cant begin to tell you what I am feeling right now besides for some reason I feel like I am hurting my son more than helping him. Hopefully that feeling will go away SOON!
~Mike and Casie
Monday, May 11, 2009
The count down says 1 day 26 hours...YIKES!
We are doing well, Skyler hasn't asked about his surgery anymore, I think he forgot :) We had a pretty good weekend since it was Mother's Day my family took me to the Mom & Me at the Zoo day at Woodland Park Zoo in Seattle. We had some family friends and their kids come with, it was fun and a beautiful day! Skyler really enjoyed him self, Mike and I both said it was nice to see him be so happy because we both can picture in our head what Wednesday night and beyond will bring!
Still no time's yet for surgery, I am anxious to know if we have the bit of the morning with Seth to spend on Wednesday. Probably not likely, never is but nice to hope. We are very thankful for my parents and sister who are taking Seth for the times before and after daycare, it means a lot to us to have such great support. And I want to also thank Jessica for asking if we need anything, again Your a great friend! I owe ya!! Its nice to know that when we need to have our most attention on Skyler that Seth is safe, loved and cared for and probably wont even miss us for those short times! Makes it a little less stressful!
Speaking of Seth, well he had this "bark" of a cough for the past few weeks, and I didn't run him into the Dr. to get check out due to the "SWINE FLU" freak out...no I never thought he had it, i just didn't want to be one of those! But on Sunday I took him into the Urgent Care just to be looked at, because they are doing health checks at the front door at Children's and we don't want Seth NOT to be able to visit his brother. But Seth was dx'd with a sinus infection..ugh! Poor teeny nostrils!
Still no time's yet for surgery, I am anxious to know if we have the bit of the morning with Seth to spend on Wednesday. Probably not likely, never is but nice to hope. We are very thankful for my parents and sister who are taking Seth for the times before and after daycare, it means a lot to us to have such great support. And I want to also thank Jessica for asking if we need anything, again Your a great friend! I owe ya!! Its nice to know that when we need to have our most attention on Skyler that Seth is safe, loved and cared for and probably wont even miss us for those short times! Makes it a little less stressful!
Speaking of Seth, well he had this "bark" of a cough for the past few weeks, and I didn't run him into the Dr. to get check out due to the "SWINE FLU" freak out...no I never thought he had it, i just didn't want to be one of those! But on Sunday I took him into the Urgent Care just to be looked at, because they are doing health checks at the front door at Children's and we don't want Seth NOT to be able to visit his brother. But Seth was dx'd with a sinus infection..ugh! Poor teeny nostrils!
Anyhow...got a new camera today mostly because my old dying one fell outta the durango yesterday, but now its nice to have a good reliable "FAST" camera for Skyler's stay down there!
But wanted to post some pics of Skyler before his surgery.
Isn't he just precious?!!
Tuesday, May 5, 2009
Pre op appt May 4th
Man yesterday was an exhausting day. Skyler did very VERY well up until 2:00pm where he decided NOT to let mom help him with the video game in the child psych dept....thank goodness for the Neuro doc who saw the opportunity to jump in at the right time...I could feel my face becoming very red, and tho the thought went through my head "these parents don't mind a freak out moment...that's why they're here.."
So anyway, at 9am we were in the Dental clinic for some x-rays and pictures. And to talk to the oral surgeon, tho he seemed a tad bit busy it was the first time I felt "neglected" which isn't the case but I just had a list of questions I wanted answered with out being told to hold on and having to wait another 30min for an answer. It was busy.
Skyler will be there for at least 3 days, but from our past experiences, they don't discharge on Fridays or weekends, it just doesn't happen. SO that leaves Mon or Tues. 1 incision will be made on each side of his jaw bone to put in the devices, although they are going to try and do it from the gums on the inside of cheeks, but highly unlikely that will work.
The plan is to turn each day twice daily until the 15mm mark is met. He assured me its not painful, but I say BS! We will see.
The plan is to get Skyler a communication board, as he will have little want or ability to talk while in and even a few weeks after... :( this makes me very sad something I never prepared for, again, we will see. Feeding will be another quest. We have worked SO hard for these 13lbs in the past 16months that the thought of going backwards scares me. They say a feeding tube via the nose is a possibility if he cant seem to eat well, HA I dare 'em! At least 2 night s in the ICU then we get to go to the surgical floor and learn our thing and then we will be released. Hopefully able to get nursing care back in the home, we kinda got barked at yesterday for not already having it...because of his trach we really should have it, but really, I like NOT having them :P
But for the next few months, I cant seem to see much working the right way with out them...Please pray we get it and get some decent knowledgeable people in our home to help us!
And lastly we saw neuropsych. for some testing yesterday, (IQ and a few other things)- went OK, we do have to go back and do more. But our AR NP who's been following us for ADHD and anxiety increased his anxiety med as I described to her "Rainman" like behaviors...the Lil man LOVES music, and boy it better be 92.5 Movin' FM, (no I am not working for them, this is NOT a promo) but seriously...over and over and over.....So she just said that his body has adjusted to the teeny weeny dose hes been on and it was time to increase a bit I feel bad for having him on it, but he cant stop going in circles with out it.
That was our day.
It was a long one. And the whole time I was telling anyone who asked there "when was his surgery" I was telling them 2 weeks, well thanks to Erica this am, she reminded me that today was the 5th, and the 13th was next week!! EEK! :P
guess its time to get in gear and prepared. We are going to the zoo this weekend and maybe even the Children's Museum too so we can get all the fun we can before fun wont be in our vocab!
All our love
Casie & Mike
So anyway, at 9am we were in the Dental clinic for some x-rays and pictures. And to talk to the oral surgeon, tho he seemed a tad bit busy it was the first time I felt "neglected" which isn't the case but I just had a list of questions I wanted answered with out being told to hold on and having to wait another 30min for an answer. It was busy.
Skyler will be there for at least 3 days, but from our past experiences, they don't discharge on Fridays or weekends, it just doesn't happen. SO that leaves Mon or Tues. 1 incision will be made on each side of his jaw bone to put in the devices, although they are going to try and do it from the gums on the inside of cheeks, but highly unlikely that will work.
The plan is to turn each day twice daily until the 15mm mark is met. He assured me its not painful, but I say BS! We will see.
The plan is to get Skyler a communication board, as he will have little want or ability to talk while in and even a few weeks after... :( this makes me very sad something I never prepared for, again, we will see. Feeding will be another quest. We have worked SO hard for these 13lbs in the past 16months that the thought of going backwards scares me. They say a feeding tube via the nose is a possibility if he cant seem to eat well, HA I dare 'em! At least 2 night s in the ICU then we get to go to the surgical floor and learn our thing and then we will be released. Hopefully able to get nursing care back in the home, we kinda got barked at yesterday for not already having it...because of his trach we really should have it, but really, I like NOT having them :P
But for the next few months, I cant seem to see much working the right way with out them...Please pray we get it and get some decent knowledgeable people in our home to help us!
And lastly we saw neuropsych. for some testing yesterday, (IQ and a few other things)- went OK, we do have to go back and do more. But our AR NP who's been following us for ADHD and anxiety increased his anxiety med as I described to her "Rainman" like behaviors...the Lil man LOVES music, and boy it better be 92.5 Movin' FM, (no I am not working for them, this is NOT a promo) but seriously...over and over and over.....So she just said that his body has adjusted to the teeny weeny dose hes been on and it was time to increase a bit I feel bad for having him on it, but he cant stop going in circles with out it.
That was our day.
It was a long one. And the whole time I was telling anyone who asked there "when was his surgery" I was telling them 2 weeks, well thanks to Erica this am, she reminded me that today was the 5th, and the 13th was next week!! EEK! :P
guess its time to get in gear and prepared. We are going to the zoo this weekend and maybe even the Children's Museum too so we can get all the fun we can before fun wont be in our vocab!
All our love
Casie & Mike
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