The more I say it, the more chance of higher the chance of something bad happening. It seems like lately, I've been telling LOTS of people, "He's GREAT!!!" "No surgery for a year!" "Haven't been to an ER in ages." The increase is probably due to back to school and catching up with people from the summer. But I really need to say, "He's fine." And leave it at that.
Last week, I had a cold, and this week, Parker and Jack, and now Emma came down with it. Jack, well, he gets bad...fast. Last year, he ended up in the hospital for 3 days, from a cold. So I've been watching him close, waiting for the fever spike, which he is so good at. And we all know, I'm always on shunt alert.
He took a LONG nap yesterday, over 3 hours, but he's sick. No big deal. Then last night around 9:00, he started getting fussy. Now sure all two yr olds are fussy. Not him. The fussiness turned into whimpering, and grabbing his head, rubbing his forehead, and cold sweats. I'd say, "Does your tummy hurt? Does you head hurt? Do your ears hurt?" A whimpered "YA", to all but ears, that one got a no. He went on for about an hour, crying, and whimpering, squinting his eyes, like it hurt to open them.
So I had Daddy ask him what was wrong. Maybe he could get more information. Now he's telling us, his elbow and knees hurt. Um...maybe it's time to stop asking. So after about an hour an a half of this, I decided to take him in. So now is the dilemma, drive across the street, or 20 min to the hospital that takes care of children. *sigh*
I headed to PCMC, but had the most sickening feeling, I should stay close to home. I didn't WANT to go to the "BIG hospital". I wanted a CT scan-they don't have one for kids, with the little papoose board, to snuggle them in. They don't know I'm not a hysterical mother, and I actually know what I'm talking about. They won't have "KID STUFF" readily available. These are the things that have been going through my mind for the last hour. But it was 11:00 at night. PCMC is FAR away at 11:00 at night, even further in the middle of the night, when we are done. And the BIG hospital, I can see from my driveway. I can read the sign on top of it. So I followed my gut, turned around, and drove 3 minutes to the BIG hospital.
He's still a little whimpery, but better. They ask me what's going on, and I say, "It's either a sinus infection, or his shunt is failing." *rolling eyes* They got us right back, we never even sat in the waiting room. Luckily, there was noone there. Of course he charmed the pants off everyone in triage. :) He was told at least 3 times last night, you are the BEST patient I've had ALL DAY!! heehee
Fortunatly, they realized RIGHT away, ;) I knew what I was talking about, and did everything I asked them to do. The Dr even said, "What do you want us to do?" YIPPEE!!!! The imaging guy, was BLOWN away at how good Jack was. Duh...They all were really. Oh how I love those moments. What I really love is the way people melt when Jack tells them "thank you" in sign. Seriously, the cutest thing you ever saw.
The Ct scan was of course in a HUGE machine! Nothing to snuggle my little bug, but he did GREAT! Such a trooper! Just laid there and smiled. The tech was running around trying to figure out how to get the best pictures. Cuz ya know, it was an adult machine. But we got it all figured out.
So...shunt it fine, YA! But, as the radiologist, and Dr said, "He has an impressive Sinus infection." Now I'm not sure, if they don't see many kids with clefts, or kids at all for that matter, but in any case, every sinus passage he has, is filled with crap.
One other cool thing, the guy who checked us in, came back, and said, "So now I know what a VP shunt is." Apparently he didn't know, and had googled it. Then we let him feel is on his head, and since he got his hair cut, you can see the tubing. This guy thought it was the coolest thing. The guy works in the ER of the largest hospital in Utah. Crazy.
So I'm REALLY glad we went across the street for a sinus infection. Besides, I figured, if it WAS his shunt, maybe we could have gotten a ride, to PCMC. Ambulance rides are cheaper then gas right???
Showing posts with label PCMC. Show all posts
Showing posts with label PCMC. Show all posts
Wednesday, September 10, 2008
Saturday, September 8, 2007
A week of "FINALLY'S"
Here are the contest results...FINALLY...
First of all, thanks to all those who voted for Parker, but alas a younger, cuter child won. ...toddlers... *rolling eyes* Here is the link to see who DID win.
And the caption contest. That was fun huh? I have a zillion more...If I remember, we'll play again tomorrow. That is... if I make it out of church alive. Anyway...Caption...
THE WINNER IS.....
"Yeah, really funny, I know where this thing is supposed to go. I am not amused!" by Christine!!!
So the other "finally's"...
Jack was fussy all week, in the evenings. Classic sign of over draining. Also the back of his head seems to have increased in size. Just the back, below, of course, where they measure his head circumference.
So after much thought, and worry, I FINALLY took him in. I showed them this picture, and the Dr say, "Well, it 'FEELS' ok, I think he's fine." She's right, it doesn't feel squishy. So that's good. But why is it bigger. Some say it's the light in the picture, some say, OH MY HECK, you need to call. Who knows. But I noticed it first,
caressing the back of his head.
Of course since I took him in, he has been better. Of course. I think maybe he was just getting used to the new pressure in his head. But it doesn't explain the bulge.
E
mma started school!! FINALLY. She's is having a blast! I had quite the moment the first day. The last time Emma and I walked into Miss L's class, Emma was a newborn, in her car seat! It hit me so hard, and I almost started to cry, but decided, it would only embarrass her! She is so big! She is so OLD. It's just crazy. My friend was just reminding me all her kids are in the double digits! Goodness, where does the time go...
The first day, they were to bring their favorite bear. Of course
I forgot, but luckily, there were some to choose from in the car! Chicken Little, and a frog. Emma chose the frog. They went around the room, and Miss L asked everyone their "bear's" name. Emma's was so unusual, she asked her where she got it? Emma said, "From the CAR!!" Oye...
Then on Thursday, they had a parade, and picnic with them. This is Emma, taking her "frog" to go down the slide.
As I've told you before, Nick and Parker both had this sweet teacher. And when we bought Emma's backpack, I had forgotten, that this teacher, supplies them with a book bag. So now, we have set out, to make her book bag, all pink and High School Musical, like her back pack! Hopefully, she'll still like it for kindergarten. You know, how their favorites change so quickly! I'll put up a picture when we get it all decorated. I ordered the cutest iron on off Ebay. She'll get the bag on Monday or Tuesday. And then begins my own personal struggle of, letting her do what she wants, and making it look "nice" ...hate that struggle!
Then Thursday, Parker FINALLY turned 10, AND got his skate board. Ever since they were about 3 and 5, the 21 days between their birthdays, has been filled whining from Parker. "When is it MY birthday?" "How come Nick got presents?"...you know stuff like that. I thought it would get better the older he gets. I guess it has just gotten different. This year it was, "Nick won't let me ride his skate board!" Although... he was MUCH more willing to let other people ride his, always with the..."See I can be nice and share"...tag...but still... He is so happy to have his OWN skate board!!
As far as the rest of the week, well you know what happened! *rolling eyes*
Sunday, I start leading the singing. *sigh* I'll let you know what happens! I do want to share this though. My dear sweet Lisa reminded me of something. Here is what she said:
"When Ethan was in NICU (Newborn Intensive Care Unit), for those longs months, I had the opportunity to meet one of the twelve apostles. He said something very curious to me, that I’ll never ever forget.
He said, and I wish I had it written down, so I could quote him word for word, but it went something like this…'It is our obligation to provide service, even if we don’t feel like the person who is asking, actually needs that service. It is not our place to question, them. It is our responsibility to help them. As well as it is their responsibility to ask. There are grave eternal consequences for those that do not ask for help. They that deny others the opportunity of service, are far worse off, than those who don’t help, those that ask.'
It still gives me goose bumps. He was so close to me, and his hand was on my shoulder, and I didn’t just hear what he said, I felt it."
Thanks LIS!! I'll try to remember that...and try to FINALLY swallow my pride, and ASK!!!
First of all, thanks to all those who voted for Parker, but alas a younger, cuter child won. ...toddlers... *rolling eyes* Here is the link to see who DID win.
And the caption contest. That was fun huh? I have a zillion more...If I remember, we'll play again tomorrow. That is... if I make it out of church alive. Anyway...Caption...
THE WINNER IS.....
"Yeah, really funny, I know where this thing is supposed to go. I am not amused!" by Christine!!!
So the other "finally's"...
Jack was fussy all week, in the evenings. Classic sign of over draining. Also the back of his head seems to have increased in size. Just the back, below, of course, where they measure his head circumference.
So after much thought, and worry, I FINALLY took him in. I showed them this picture, and the Dr say, "Well, it 'FEELS' ok, I think he's fine." She's right, it doesn't feel squishy. So that's good. But why is it bigger. Some say it's the light in the picture, some say, OH MY HECK, you need to call. Who knows. But I noticed it first,
caressing the back of his head.
Of course since I took him in, he has been better. Of course. I think maybe he was just getting used to the new pressure in his head. But it doesn't explain the bulge.
E
mma started school!! FINALLY. She's is having a blast! I had quite the moment the first day. The last time Emma and I walked into Miss L's class, Emma was a newborn, in her car seat! It hit me so hard, and I almost started to cry, but decided, it would only embarrass her! She is so big! She is so OLD. It's just crazy. My friend was just reminding me all her kids are in the double digits! Goodness, where does the time go...The first day, they were to bring their favorite bear. Of course
I forgot, but luckily, there were some to choose from in the car! Chicken Little, and a frog. Emma chose the frog. They went around the room, and Miss L asked everyone their "bear's" name. Emma's was so unusual, she asked her where she got it? Emma said, "From the CAR!!" Oye...Then on Thursday, they had a parade, and picnic with them. This is Emma, taking her "frog" to go down the slide.
As I've told you before, Nick and Parker both had this sweet teacher. And when we bought Emma's backpack, I had forgotten, that this teacher, supplies them with a book bag. So now, we have set out, to make her book bag, all pink and High School Musical, like her back pack! Hopefully, she'll still like it for kindergarten. You know, how their favorites change so quickly! I'll put up a picture when we get it all decorated. I ordered the cutest iron on off Ebay. She'll get the bag on Monday or Tuesday. And then begins my own personal struggle of, letting her do what she wants, and making it look "nice" ...hate that struggle!
Then Thursday, Parker FINALLY turned 10, AND got his skate board. Ever since they were about 3 and 5, the 21 days between their birthdays, has been filled whining from Parker. "When is it MY birthday?" "How come Nick got presents?"...you know stuff like that. I thought it would get better the older he gets. I guess it has just gotten different. This year it was, "Nick won't let me ride his skate board!" Although... he was MUCH more willing to let other people ride his, always with the..."See I can be nice and share"...tag...but still... He is so happy to have his OWN skate board!!As far as the rest of the week, well you know what happened! *rolling eyes*
Sunday, I start leading the singing. *sigh* I'll let you know what happens! I do want to share this though. My dear sweet Lisa reminded me of something. Here is what she said:
"When Ethan was in NICU (Newborn Intensive Care Unit), for those longs months, I had the opportunity to meet one of the twelve apostles. He said something very curious to me, that I’ll never ever forget.
He said, and I wish I had it written down, so I could quote him word for word, but it went something like this…'It is our obligation to provide service, even if we don’t feel like the person who is asking, actually needs that service. It is not our place to question, them. It is our responsibility to help them. As well as it is their responsibility to ask. There are grave eternal consequences for those that do not ask for help. They that deny others the opportunity of service, are far worse off, than those who don’t help, those that ask.'
It still gives me goose bumps. He was so close to me, and his hand was on my shoulder, and I didn’t just hear what he said, I felt it."
Thanks LIS!! I'll try to remember that...and try to FINALLY swallow my pride, and ASK!!!
Tuesday, August 21, 2007
Mad or blessed!?
So here I sit, alone with my thoughts. OH NO!!, you say. Well, not really...
He has done so well today, I can't even believe it! I'm still waiting for something bad to happen. Our room is small, but fine. It's certainly not where Em stayed, but it's nice, and clean. He was up running around all day! Took a little nap around 6:00, and was up and running when Gramma, and Emma came. We kept asking him, if he knew he'd had surgery.
He has never been fussy, or grumpy, or even acted like he's uncomfortable! He wasn't even a bit loopy. It is just weird. The Dr asked how he's been the last week, and was seriously shocked when we said totally fine!
Everyone...of course...is totally in love. He just stares everyone down. It is hysterical! He doesn't trust anyone! But he is very pleasant about it!
I did think about a few more things I hate about being here.
The pink admit bracelet.
Hearing the life flight helicopter, land on the roof.
The phones ringing, with their "non"ring. HATE IT!
The way his breath smells, from being intubated . HATE THAT TOO!
His name written in black on our name tags. Red for going home that day, Black for being admitted. Black...bad.
Did I mention the phones? It's like a Pavlovian response. I get all panicky. Hate it.
The fact that they tell you, you can't use the bathroom in the room. For pete's sake. He's a baby, like I'm gonna leave him to run down the hall.
On the bathroom note. I hate it when I go in there, and they come in the room and leave, thinking I'm not in the room. Murphy's law. Stupidness...
I hate the sound the IV fluids make. If you have heard it, you know what I mean!
I hate the D*** beeping, when he knocks off a lead, or his O2 thing. SHEESH!! Makes me nuts.
So...this is what I LOVE about coming here...and don't make fun of me!
The floor is clean.
They come and take out your garbage once a day, and I don't have to ask them 4 times.
They have fun toys.
My opinion matters. They ask me how I learn stuff. They ask me if I want to be involved in his care. They think I'm smart.
I am as important as Jack is. EVERYTIME someone comes in the room, with the exception of the garbage people, they ask if I need anything!
Every person that comes in the room, addresses Jack. They talk to him. They make sure it's OK with HIM if they come in, and do something. The man with the menu, talked to Jack, and showed him his name tag, and said he was from the kitchen. When Emma was in, the child life specialist, introduced herself and said I'm from the playroom, can I come in YOUR room!? Of course Emma said no, but that is irrelevant! ;)
We have the cutest male nurse tonight. We have chatted quite a bit about our mutual favorite TV shows, and he is SO cute with Jack, and me for that matter. He told the charge nurse I was his new girlfriend. So sweet...to flirt with a fat old lady in her Mommy jammies!!!
Sure I can't rewind the TV, and sure I have to look up, but it's here, and it keeps me entertained!
This whole experience has been so interesting. If he had not been sick, last May, and we had not asked for a CT scan, and requested an MRI6 months ago, I don't know what would have happened! We seriously fell over this. Tripped on it. Had it land in our laps. He had NO symptoms, yet the shunt was totally blocked, and not working. Someone commented, that they were thankful to be prepared, and not follow an ambulance. I'm certain, we would have! I am SO thankful, he is all fixed. And there was no trouble before hand. I had heard story after story, about kids in constant pain, and screaming for months, and not being themselves. I have been so blessed. I may have been mad yesterday, but today...I am counting my blessings.
He has done so well today, I can't even believe it! I'm still waiting for something bad to happen. Our room is small, but fine. It's certainly not where Em stayed, but it's nice, and clean. He was up running around all day! Took a little nap around 6:00, and was up and running when Gramma, and Emma came. We kept asking him, if he knew he'd had surgery.
He has never been fussy, or grumpy, or even acted like he's uncomfortable! He wasn't even a bit loopy. It is just weird. The Dr asked how he's been the last week, and was seriously shocked when we said totally fine!
Everyone...of course...is totally in love. He just stares everyone down. It is hysterical! He doesn't trust anyone! But he is very pleasant about it!
I did think about a few more things I hate about being here.
The pink admit bracelet.
Hearing the life flight helicopter, land on the roof.
The phones ringing, with their "non"ring. HATE IT!
The way his breath smells, from being intubated . HATE THAT TOO!
His name written in black on our name tags. Red for going home that day, Black for being admitted. Black...bad.
Did I mention the phones? It's like a Pavlovian response. I get all panicky. Hate it.
The fact that they tell you, you can't use the bathroom in the room. For pete's sake. He's a baby, like I'm gonna leave him to run down the hall.
On the bathroom note. I hate it when I go in there, and they come in the room and leave, thinking I'm not in the room. Murphy's law. Stupidness...
I hate the sound the IV fluids make. If you have heard it, you know what I mean!
I hate the D*** beeping, when he knocks off a lead, or his O2 thing. SHEESH!! Makes me nuts.
So...this is what I LOVE about coming here...and don't make fun of me!
The floor is clean.
They come and take out your garbage once a day, and I don't have to ask them 4 times.
They have fun toys.
My opinion matters. They ask me how I learn stuff. They ask me if I want to be involved in his care. They think I'm smart.
I am as important as Jack is. EVERYTIME someone comes in the room, with the exception of the garbage people, they ask if I need anything!
Every person that comes in the room, addresses Jack. They talk to him. They make sure it's OK with HIM if they come in, and do something. The man with the menu, talked to Jack, and showed him his name tag, and said he was from the kitchen. When Emma was in, the child life specialist, introduced herself and said I'm from the playroom, can I come in YOUR room!? Of course Emma said no, but that is irrelevant! ;)
We have the cutest male nurse tonight. We have chatted quite a bit about our mutual favorite TV shows, and he is SO cute with Jack, and me for that matter. He told the charge nurse I was his new girlfriend. So sweet...to flirt with a fat old lady in her Mommy jammies!!!
Sure I can't rewind the TV, and sure I have to look up, but it's here, and it keeps me entertained!
This whole experience has been so interesting. If he had not been sick, last May, and we had not asked for a CT scan, and requested an MRI6 months ago, I don't know what would have happened! We seriously fell over this. Tripped on it. Had it land in our laps. He had NO symptoms, yet the shunt was totally blocked, and not working. Someone commented, that they were thankful to be prepared, and not follow an ambulance. I'm certain, we would have! I am SO thankful, he is all fixed. And there was no trouble before hand. I had heard story after story, about kids in constant pain, and screaming for months, and not being themselves. I have been so blessed. I may have been mad yesterday, but today...I am counting my blessings.
Monday, August 20, 2007
Ok...I'm feeling better..
So we have to be there at 10:00. There will be a few friends there the same time as us. And people have offered to visit. But once he's out, I think we'll lay low. I don't know how he'll be. This is the first brain surgery, since he was 3 weeks old.
I keep thinking he will be fine, but I have to be ready for anything...ya know!??
It's just SO frustrating to have NO CONTROL!! They say they have set 2 hours for him. But who knows.
And ya know, it IS a GREAT hospital. He is in GREAT hands, and I wouldn't do it anywhere else. I like knowing what to expect, and I hate it! And the best thing, is I can take you all with me...sort of...
:)
I keep thinking he will be fine, but I have to be ready for anything...ya know!??
It's just SO frustrating to have NO CONTROL!! They say they have set 2 hours for him. But who knows.
And ya know, it IS a GREAT hospital. He is in GREAT hands, and I wouldn't do it anywhere else. I like knowing what to expect, and I hate it! And the best thing, is I can take you all with me...sort of...
:)
Ya know what...
I don't want to take Jack to the hospital tomorrow.
I don't want to wait for them to call me and tell me what time I can come.
I don't want to spend 10 minutes on the phone, telling them....once again...all his issues. Can't they keep it on file?
I don't want to pack for an overnight stay.
I don't want to remember to get cash, so I can eat.
I don't want to eat at the "Rainbow Cafe".
I don't want to check in to same day surgery, and tell them everything...again.
I don't want to wait for them to come get us.
I don't want to send him off with the anesthesiologist.
I don't want to wait in the same day surgical family waiting room.
I don't want to watch the Doctors come in and out, and not talk to us.
I don't want to jump everytime the phone rings, hoping it is for ..."a parent for Jack Simmons"
I don't want to have that feeling, when they don't call for me. Because he isn't waking up from the anesthesia.
I don't want to leave Steve in the waiting room, and go back to see him. But I don't want Steve to go back first.
I don't want to get a crappy nurse. Not that we would, but I'm really not in the mood to!
I don't want to have to watch TV looking up. And not be able to rewind it.
I don't want to sleep on the crappy bed.
I don't want to miss Nick's second day of school, first day with all the grades.
I don't want to send Emma to my Mom's AGAIN...
I don't want to, I don't want to, I don't want to!!!!!!!!
But I will, and now that I've gotten it out...I feel better!!! A little...
I don't want to wait for them to call me and tell me what time I can come.
I don't want to spend 10 minutes on the phone, telling them....once again...all his issues. Can't they keep it on file?
I don't want to pack for an overnight stay.
I don't want to remember to get cash, so I can eat.
I don't want to eat at the "Rainbow Cafe".
I don't want to check in to same day surgery, and tell them everything...again.
I don't want to wait for them to come get us.
I don't want to send him off with the anesthesiologist.
I don't want to wait in the same day surgical family waiting room.
I don't want to watch the Doctors come in and out, and not talk to us.
I don't want to jump everytime the phone rings, hoping it is for ..."a parent for Jack Simmons"
I don't want to have that feeling, when they don't call for me. Because he isn't waking up from the anesthesia.
I don't want to leave Steve in the waiting room, and go back to see him. But I don't want Steve to go back first.
I don't want to get a crappy nurse. Not that we would, but I'm really not in the mood to!
I don't want to have to watch TV looking up. And not be able to rewind it.
I don't want to sleep on the crappy bed.
I don't want to miss Nick's second day of school, first day with all the grades.
I don't want to send Emma to my Mom's AGAIN...
I don't want to, I don't want to, I don't want to!!!!!!!!
But I will, and now that I've gotten it out...I feel better!!! A little...
Monday, August 13, 2007
I jinxed it...
What a long FREAKIN day!!
The MRI went GREAT! We got to stay in the room, while he was getting it. The MRI itself, is LOUD! They plug the child's ears really good, and gave us some ear plugs too. It's actually quite musical. It took several different scans, and each was 1 minute, or 2 minutes, or a variation. And each scan, had a different rhythmic pattern. Maybe I was just tired, but I thought it was really cool, and very funky music-ish.
We then went to recover, where he just slept. They told us to expect him to sleep for about an hour and a half, but he was awake, in like 40 min. And woke up, like he'd been taking a nap. When he saw me he even smiled! HE kept looking at his thumb, that was glowing because of the pulse ox. For the first couple of hours, he was pretty wasted. He would try to walk, and fall down. He couldn't even sit, he'd just fall over! It was cute and sad!
Then we went to see the Neurosurgeon. Did the general head measuring -53 cen., and how's he doing. Asked how he was developmentally. I said, he was walking, not very good at the moment, but usually. And how we thought cognitively, he was great.
Then he pulled up the MRI on the computer. As well as the CT scan we had done back, Memorial Day weekend, when he was sick. His ventricles, are significantly larger. Since the END of MAY!!
*sigh*
So we went to get a shunt series(xray of his head and tummy) done, to make sure his shunt wasn't broken. Like kinked, or had come loose, or just plain broken. Luckily, it's not broken, but it's not working. It's malfunctioning. He asked if we noticed if he was acting weird. I couldn't think of anything. It's hard to tell what is the difference between teething(which he is)...toddlerhood(which he is)...sleepiness(which he gets, when it's time for bed)...ya know? I had been thinking he was teething, I even gave him some motrin the other night! He has like 3 teeth trying to come in!! I don't know. It's SO frustrating.
The NS(neurosurgeon) said he could schedule surgery tomorrow! ugh I asked if he felt comfortable waiting till next week, seeing as this is a big week for Nick, with "Jr High starting" events, starting on Wed.
So, we are scheduled for next Tuesday, the 21st. He will be admitted, at least over night.
Ugh ugh ugh...
It's the second day of school for Parker, third for Nick.
After we scheduled it, I realized, that we had a follow-up, to see if Jack should get ear tubes, on the 27th. I was just picturing going in there, and him saying, it looks like we should put tubes in.
So I had a horrible time trying to relay the message, to the ENT's staff, that he was having surgery, and would he consider looking at him before hand. I had to take Steve to work and come back, but the ENT, decided, without even looking in his ears, to put tubes in. 96 % of caucasian kids with clefts, need tubes. He said he'd rather take advantage of a surgery, and Jack be in the 4 %, then have to go back in, in the next couple of months again. And I completely agree. Ear tubes are a simple procedure, but a procedure nonetheless.
Oh, and since there is now fluid built up, we still don't have a clear picture of his stupid brain.
grrrrrr...
So Jack is having a Shunt Revision, and ear tubes placed on August 21st.
And I'm NOT saying...ANYMORE...he has NO procedures coming up.
The MRI went GREAT! We got to stay in the room, while he was getting it. The MRI itself, is LOUD! They plug the child's ears really good, and gave us some ear plugs too. It's actually quite musical. It took several different scans, and each was 1 minute, or 2 minutes, or a variation. And each scan, had a different rhythmic pattern. Maybe I was just tired, but I thought it was really cool, and very funky music-ish.
We then went to recover, where he just slept. They told us to expect him to sleep for about an hour and a half, but he was awake, in like 40 min. And woke up, like he'd been taking a nap. When he saw me he even smiled! HE kept looking at his thumb, that was glowing because of the pulse ox. For the first couple of hours, he was pretty wasted. He would try to walk, and fall down. He couldn't even sit, he'd just fall over! It was cute and sad!
Then we went to see the Neurosurgeon. Did the general head measuring -53 cen., and how's he doing. Asked how he was developmentally. I said, he was walking, not very good at the moment, but usually. And how we thought cognitively, he was great.
Then he pulled up the MRI on the computer. As well as the CT scan we had done back, Memorial Day weekend, when he was sick. His ventricles, are significantly larger. Since the END of MAY!!
*sigh*
So we went to get a shunt series(xray of his head and tummy) done, to make sure his shunt wasn't broken. Like kinked, or had come loose, or just plain broken. Luckily, it's not broken, but it's not working. It's malfunctioning. He asked if we noticed if he was acting weird. I couldn't think of anything. It's hard to tell what is the difference between teething(which he is)...toddlerhood(which he is)...sleepiness(which he gets, when it's time for bed)...ya know? I had been thinking he was teething, I even gave him some motrin the other night! He has like 3 teeth trying to come in!! I don't know. It's SO frustrating.
The NS(neurosurgeon) said he could schedule surgery tomorrow! ugh I asked if he felt comfortable waiting till next week, seeing as this is a big week for Nick, with "Jr High starting" events, starting on Wed.
So, we are scheduled for next Tuesday, the 21st. He will be admitted, at least over night.
Ugh ugh ugh...
It's the second day of school for Parker, third for Nick.
After we scheduled it, I realized, that we had a follow-up, to see if Jack should get ear tubes, on the 27th. I was just picturing going in there, and him saying, it looks like we should put tubes in.
So I had a horrible time trying to relay the message, to the ENT's staff, that he was having surgery, and would he consider looking at him before hand. I had to take Steve to work and come back, but the ENT, decided, without even looking in his ears, to put tubes in. 96 % of caucasian kids with clefts, need tubes. He said he'd rather take advantage of a surgery, and Jack be in the 4 %, then have to go back in, in the next couple of months again. And I completely agree. Ear tubes are a simple procedure, but a procedure nonetheless.
Oh, and since there is now fluid built up, we still don't have a clear picture of his stupid brain.
grrrrrr...
So Jack is having a Shunt Revision, and ear tubes placed on August 21st.
And I'm NOT saying...ANYMORE...he has NO procedures coming up.
Friday, August 10, 2007
Things I learned last night.
I went to an IEP workshop last night! WOW! SO great!! Here are some of the GREAT things I learned:
~I am VERY lucky to live in Murray School District. They have a fabulous Special Ed program, for Nick and Jack.
~I'm going to make up a "profile" of sorts, for Nick, to give to all his teachers. It will list his strengths, and the things he needs help with, and will have his picture on it. When I get it all typed up, let me know if you want to see it, and I'll send you a copy!
~IEP goals, are suggestions, and I am in charge! If I don't like something, I need to speak up!
~You too, can go to this workshop, and you should if you have an IEP. And live in Utah. :) Here is where to get info!
Here are somethings I learned, when I should have been in bed:
~Trampoline accidents ALWAYS happens when I'm trying to do something for one specific child.
~Emma CAN be convinced that I know best.
~Iceberg, closes at 11:00 pm. In the summer. So stupid.
~When you pull into the parking lot of PCMC's ER, and there is one space, you're not going to get in and out.
~Parents, in the ER in middle of the night, are tired, and stressed. And kids are sleepy.
~I should think about WHAT is on the floor that I just slipped on, and fell down, in front of the entire ER waiting room, before I clean it up.
~My butt WILL fall asleep with Emma asleep on my lap, for and hour and a half.
~Wake up Emma- more than we did, BEFORE starting the procedure.
~ALWAYS, ask questions, and be nice to the staff. They are nicer to you!!
~Babies in respiratory distress, stress me out. The baby behind the curtain from us couldn't breath. ugh... makes me sad, and feel yucky. I can't breathe either.
~Watching a little girl come in on an ambulance, is yucky. And when it's 2 am, it's worse.
~The freeway to my house, from the hospital, is COMPLETELY empty, at 3 am. The entire 11 mile stretch home, I was the only one on the road. And, it looks completely different.
~Emma looks like Frankenstein!...
~I am VERY lucky to live in Murray School District. They have a fabulous Special Ed program, for Nick and Jack.
~I'm going to make up a "profile" of sorts, for Nick, to give to all his teachers. It will list his strengths, and the things he needs help with, and will have his picture on it. When I get it all typed up, let me know if you want to see it, and I'll send you a copy!
~IEP goals, are suggestions, and I am in charge! If I don't like something, I need to speak up!
~You too, can go to this workshop, and you should if you have an IEP. And live in Utah. :) Here is where to get info!
Here are somethings I learned, when I should have been in bed:
~Trampoline accidents ALWAYS happens when I'm trying to do something for one specific child.
~Emma CAN be convinced that I know best.
~Iceberg, closes at 11:00 pm. In the summer. So stupid.
~When you pull into the parking lot of PCMC's ER, and there is one space, you're not going to get in and out.
~Parents, in the ER in middle of the night, are tired, and stressed. And kids are sleepy.
~I should think about WHAT is on the floor that I just slipped on, and fell down, in front of the entire ER waiting room, before I clean it up.
~My butt WILL fall asleep with Emma asleep on my lap, for and hour and a half.
~Wake up Emma- more than we did, BEFORE starting the procedure.
~ALWAYS, ask questions, and be nice to the staff. They are nicer to you!!
~Babies in respiratory distress, stress me out. The baby behind the curtain from us couldn't breath. ugh... makes me sad, and feel yucky. I can't breathe either.
~Watching a little girl come in on an ambulance, is yucky. And when it's 2 am, it's worse.
~The freeway to my house, from the hospital, is COMPLETELY empty, at 3 am. The entire 11 mile stretch home, I was the only one on the road. And, it looks completely different.
~Emma looks like Frankenstein!...
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