Hey peeps, I know I promised pictures and a video. Sorry!
As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.
Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.
So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.
We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?
Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet
I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?
Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)
Showing posts with label G Tube. Show all posts
Showing posts with label G Tube. Show all posts
Thursday, May 19, 2011
Thursday, April 7, 2011
Fog
The thick fog of illness is being lifted somewhat, just leaving a thin haze behind.
You know, when you feel like everything is fuzzy and you can't really see from one moment to the next. All you try to do is survive, so you can break into the light eventually? Everything gets put on hold, laundry forms mountains and all that really gets accomplished is basic needs. You just lay in bed, occasionally sipping clear liquids, and sleeping. Rarely do you get up for anything but the bathroom.
Eventually you can focus enough to watch television, but nothing that requires thinking too much. Reading is out of the question. It is too laborious, and that is saying a lot for someone who prefers a book to almost anything else. Little by little, there are breaks in the heavy mist and you can imagine being vertical again.
I've spent the last few days watching way too much HGTV and daydreaming about the day when my furniture is not from the early ancestral period. I've also convinced myself that I am Canadian, and not a European mutt like my genealogy describes. Everything Sarah Richardson and Candice Olson does is pure genius and I have thought so for years. It was kind of like getting to store up a design feast on my DVR and have Thanksgiving Day, instead of a late night nibble here and there when I had the time ;)
Cole is starting to come around. He has more strength, but still just wants to lay around watching TV all day. He is eating a little, enjoying this new freedom of being off the diet. The doctors suggested we take him off and just concentrate on controlling his diarrhea for now. So, he is having a great time with food on demand. Such a new concept for him. He's loving the experience of being able to have as many saltines as his little heart desires, and all flavors of sugar-free jello. Oy, it is going to be hard to go back to the scale.
His g tube has been bleeding a lot, and has formed granulation tissue for the first time in months. It has us slightly worried and we are waiting to hear from the doc about what to do. It was a little loose after losing weight, but it has never just started to pour blood since the actual surgery. He is full of surprises and keeps us on our toes!
Hopefully we can get healthy enough to try and take him out to the backyard for a couple of hours. The weather has been gorgeous today (so we hear), but we just stood in the doorway and watched the squirrels. It is going to start to rain again tonight, but it is forecasted to be nice again next week. I guess April showers really do bring May flowers out here. Usually we are used to still having snow on the driveway! Maybe I'll ask for wellies for my birthday.
Saturday, February 19, 2011
Ode To A G-Tube
oh g-tube how i love thee
let me count the ways
alas, there are too many
i am so glad you came to stay
in your short existence
you have repeatedly saved the day*
Oh, blessed g-tube! It kept us from checking in at Primary Childrens yesterday. We could do exactly what they would have done for us there, with multiple pokes, here at home.
let me count the ways
alas, there are too many
i am so glad you came to stay
in your short existence
you have repeatedly saved the day*
Oh, blessed g-tube! It kept us from checking in at Primary Childrens yesterday. We could do exactly what they would have done for us there, with multiple pokes, here at home.
I spoke too soon. Cole did indeed contract whatever funky flu we have and spent the majority of yesterday seizing. We had to give him rescue meds 4 times. That, is a lot. His fever spiked at 103.5 and would not go down and we had a very, very sick little boy on our hands. However, we were able to give him fluids and meds through the tube and kept him out of the ER, where he probably would have caught whatever was floating around.
I don't want to repeat this week anytime soon. Major seizures, chaos, moving and stress. I am so grateful though that I didn't have to add hospital visit to that list!
*this has absolutely no iambic pentameter, ABA format or anything remotely resembling proper poetry. It's just for fun!*
I don't want to repeat this week anytime soon. Major seizures, chaos, moving and stress. I am so grateful though that I didn't have to add hospital visit to that list!
*this has absolutely no iambic pentameter, ABA format or anything remotely resembling proper poetry. It's just for fun!*
Thursday, December 16, 2010
The Beast
The Beast decided to come out of hiding yesterday. At PCMC of all places. You would think that in a place surrounded by doctors, we would have a little help. The last two times we have been there in the last two weeks, Cole has needed rescue meds. Weird.
We went for Cole's 2 week g tube follow up. He started seizing in the playroom, on his hunt for a cozy car. The jerking continued, so Brian brought him back to me in the waiting room, to give him meds. It was our turn to go back to get height and weight. We explained what was happening and they put us in a room. Our surgeon came in, saw what was going on and said, "I'll give you a minute and come back" and walked right back out. I guess we looked like we had things under control? He asked if he could do anything to help as he was backing out of the room and I mentioned that Cole's sats were dropping and we could use the oxygen in the wall. Guess he didn't hear me? :) I doubt he has patients seize in his office very often. I had to send Brian to get someone else to find the tubing. The surgeon didn't come back for 15 minutes.
It turned out to be a big one. 15 minute Generalized Tonic Clonic with hard convulsions. He needed two different rescue medications and we had the staff searching everywhere for an oxygen mask. The O2 is right in the wall, but rarely do people use it in clinic...just us ;) He had post ictal blindness again. That has not happened for a few months, and it is only the fourth time ever. For something so rare, it is happening a lot. Chalk it up to Cole being complicated I guess. It did help when we were giving him O2. He couldn't see the mask we were holding by his head, so he did not fight it like he usually does. Gotta find something good about it, right?
Poor kid. His post ictal phase was rough. He couldn't see, couldn't walk and was very limp for a long time. Plus, the lovely angry elf came out with the Versed. Needless to say, it was an interesting visit. However, Cole's g tube looks great! We do love the surgeon even though he was not the greatest first responder to our predicament. We can stop taping it and can treat it like normal skin. He can get back into the the bathtub and even swim (if that was a possibility). We came home and just gave him a full tube feed since he was still in his post ictal phase. I am loving this thing more and more each day. There is no way that I could have convinced him to eat lunch while he was riled up with Versed and still kind of limp from an intense seizure. He doesn't have his post ictal naps any more. It would probably be easier on him, and us, but something has changed and he does not fall asleep any more, hasn't for a while.
I am hoping that we can put the beast in hiding again. 24 days without a GTC! Our previous record was 22 days. This is something to celebrate, but it always hurts when he has gone for so long without a Generalized Tonic Clonic.
You can never get comfortable. Things will change. They always do.
We went for Cole's 2 week g tube follow up. He started seizing in the playroom, on his hunt for a cozy car. The jerking continued, so Brian brought him back to me in the waiting room, to give him meds. It was our turn to go back to get height and weight. We explained what was happening and they put us in a room. Our surgeon came in, saw what was going on and said, "I'll give you a minute and come back" and walked right back out. I guess we looked like we had things under control? He asked if he could do anything to help as he was backing out of the room and I mentioned that Cole's sats were dropping and we could use the oxygen in the wall. Guess he didn't hear me? :) I doubt he has patients seize in his office very often. I had to send Brian to get someone else to find the tubing. The surgeon didn't come back for 15 minutes.
It turned out to be a big one. 15 minute Generalized Tonic Clonic with hard convulsions. He needed two different rescue medications and we had the staff searching everywhere for an oxygen mask. The O2 is right in the wall, but rarely do people use it in clinic...just us ;) He had post ictal blindness again. That has not happened for a few months, and it is only the fourth time ever. For something so rare, it is happening a lot. Chalk it up to Cole being complicated I guess. It did help when we were giving him O2. He couldn't see the mask we were holding by his head, so he did not fight it like he usually does. Gotta find something good about it, right?
Poor kid. His post ictal phase was rough. He couldn't see, couldn't walk and was very limp for a long time. Plus, the lovely angry elf came out with the Versed. Needless to say, it was an interesting visit. However, Cole's g tube looks great! We do love the surgeon even though he was not the greatest first responder to our predicament. We can stop taping it and can treat it like normal skin. He can get back into the the bathtub and even swim (if that was a possibility). We came home and just gave him a full tube feed since he was still in his post ictal phase. I am loving this thing more and more each day. There is no way that I could have convinced him to eat lunch while he was riled up with Versed and still kind of limp from an intense seizure. He doesn't have his post ictal naps any more. It would probably be easier on him, and us, but something has changed and he does not fall asleep any more, hasn't for a while.
I am hoping that we can put the beast in hiding again. 24 days without a GTC! Our previous record was 22 days. This is something to celebrate, but it always hurts when he has gone for so long without a Generalized Tonic Clonic.
You can never get comfortable. Things will change. They always do.
Sunday, December 12, 2010
Mr Incredible
Cole has some Obsessive Compulsive tendencies. Things like turning off all of the lights in the house before he goes to bed, drinking his cream only from the blue cup with the green lid and his movie preferences. Lately, it's been The Incredibles.
I am not even sure how many times a day he will watch this movie. With the glorious iPad, he can navigate to certain scenes with a few touches and he will watch them over and over and over and over again. At least during the Woody phase we could rotate movies. There is only one Incredibles. Every time the nurse came in, he was watching it.
We have had a busy week, but my little guy is a superhero. Just ask him ;)
Momma, I a superhero!
He has been doing great this week. Having increased complex-partial seizures, but today *knock on wood* is 3 whole weeks without a GTC! That is the longest he has gone in months and months! It seems that the new diet ratio is really making a difference. I am sure that having all of his meals now that we have the tube is making a difference too. Loratab during the beginning of the week took care of the pain. We are now just using Tylenol suppositories when it seems like he needs it.
The tube has been great so far! It has been really tender, which is expected. We got it checked out yesterday for some oozing and a hard spot, but things seem to be fine. We follow up with the surgeon on Wed. I think it was Thurs that we had our first ever episode of no crying or screaming or spitting involved "med pass". He just sat and watched TV while I pushed most of the meds through the tube and he took his Keppra by mouth like a breeze. It was a big moment for me. For both of us.
He did not want to eat on Thurs evening, so I just hooked him up to the pump and he watched The Incredibles (of course) while the pump did the eating for him. No pain, no fuss. It was awesome!
He truly is incredible.
Here he is with his incredible friend, Bertrand. B turned 3 years old this week, proving multiple doctors wrong. Talk about incredible. We love you B! Thanks for letting us come to your party!
I am not even sure how many times a day he will watch this movie. With the glorious iPad, he can navigate to certain scenes with a few touches and he will watch them over and over and over and over again. At least during the Woody phase we could rotate movies. There is only one Incredibles. Every time the nurse came in, he was watching it.
We have had a busy week, but my little guy is a superhero. Just ask him ;)
Momma, I a superhero!
He has been doing great this week. Having increased complex-partial seizures, but today *knock on wood* is 3 whole weeks without a GTC! That is the longest he has gone in months and months! It seems that the new diet ratio is really making a difference. I am sure that having all of his meals now that we have the tube is making a difference too. Loratab during the beginning of the week took care of the pain. We are now just using Tylenol suppositories when it seems like he needs it.
The tube has been great so far! It has been really tender, which is expected. We got it checked out yesterday for some oozing and a hard spot, but things seem to be fine. We follow up with the surgeon on Wed. I think it was Thurs that we had our first ever episode of no crying or screaming or spitting involved "med pass". He just sat and watched TV while I pushed most of the meds through the tube and he took his Keppra by mouth like a breeze. It was a big moment for me. For both of us.
He did not want to eat on Thurs evening, so I just hooked him up to the pump and he watched The Incredibles (of course) while the pump did the eating for him. No pain, no fuss. It was awesome!He truly is incredible.
Here he is with his incredible friend, Bertrand. B turned 3 years old this week, proving multiple doctors wrong. Talk about incredible. We love you B! Thanks for letting us come to your party!
Sunday, December 5, 2010
Morphine
Most people would go to sleep. For Cole, it just took the edge off of the pain, so that he could be himself. Trying to break into other patients rooms, talking to nurses, pushing buttons and cruising around in the cars. Gotta love it!
Saturday, December 4, 2010
Adventures at PCMC
Last night was eventful for Mr Social. I think he visited every nurses station on this floor and probably would have went to the others if we had let him.
He spent the evening pushing the elevator buttons, cruising around in the car and chatting it up with the ladies.
He slept well, except when the nurses came in for vitals or meds, then he would say in his sleepy voice, "Get out!".
The poor nutrition and skin thing has really hit home today. With Cole walking around last night, the port hanging off of his IV rubbed his foot with the movement. This has created a monster blister. Not enough good stuff in his body to prevent skin breakdown. He kept crying this morning telling us that his foot hurt, but everything was covered in Keflex, so we couldn't see what he meant. By the way, the IV wasn't patent anymore either. Not surprising with him, but less than a day? Come on! So, once again validation that we are doing the right thing.
We pulled the IV, got tegraderm on the blister and he's back to hitting the halls.
Except he is making Daddy carry him since he doesn't want to walk. YET, he is also making him push the cozy car around with them. Wouldn't want to leave it out of his sight (this one has a walkie-talkie and lights on the top) you never know who is going to come looking for one around here ;) Cole has been stealing all of the nurses equipment and even trying to be a part of shift change.
We have given our first feeding after a couple of hours of trying to figure out what the heck was going on. *Sending vibes towards the dietitian* He's holding it down well and we're going to try a longer feeding with a pump in an hour or so.
Cole is complicated. The diet, Dravet and everything else about him makes him a "hard patient". However, he touches most of the people who work with him and they realize that he is special.
He spent the evening pushing the elevator buttons, cruising around in the car and chatting it up with the ladies.
He slept well, except when the nurses came in for vitals or meds, then he would say in his sleepy voice, "Get out!".
The poor nutrition and skin thing has really hit home today. With Cole walking around last night, the port hanging off of his IV rubbed his foot with the movement. This has created a monster blister. Not enough good stuff in his body to prevent skin breakdown. He kept crying this morning telling us that his foot hurt, but everything was covered in Keflex, so we couldn't see what he meant. By the way, the IV wasn't patent anymore either. Not surprising with him, but less than a day? Come on! So, once again validation that we are doing the right thing. We pulled the IV, got tegraderm on the blister and he's back to hitting the halls.
Except he is making Daddy carry him since he doesn't want to walk. YET, he is also making him push the cozy car around with them. Wouldn't want to leave it out of his sight (this one has a walkie-talkie and lights on the top) you never know who is going to come looking for one around here ;) Cole has been stealing all of the nurses equipment and even trying to be a part of shift change.
We have given our first feeding after a couple of hours of trying to figure out what the heck was going on. *Sending vibes towards the dietitian* He's holding it down well and we're going to try a longer feeding with a pump in an hour or so.
Cole is complicated. The diet, Dravet and everything else about him makes him a "hard patient". However, he touches most of the people who work with him and they realize that he is special.
The Button
Cole got an AMT Mini button today. Right now it looks pretty gross, being held in by two stitches and has dried blood around it. Doesn't quite look like the beach ball plug I've described before, yet. I'll spare the close up shot tonight.
There are a lot of reasons that we did this. We (Cole included) are tired of the daily fight with medication. It is a wrestling match each time and rarely do I get it all in. Something usually ends up coming out on me, the furniture, clothes, etc. I don't know how many shirts I have had to throw away that have been a casualty of fish oil. Man, that stuff stinks! Even if you pre-treat and wash in hot water immediately. I can still smell it after three or four washes and the oil just seeps in and stains. Both of us being naked for meds in an effort to save clothes, really doesn't work ;) We know that Cole is going to have to take medication for the rest of his life. Now, thanks to this nifty tube, I won't have to sacrifice cute clothes, or do a headlock for regular meds ever again! (fingers crossed) I think Versed will still cause me to have to pull out the wrestling skills.
Cole has been gaining too much weight. "What? I thought kids who are losing weight get tubes?" If that is what you are thinking, you're right...unless the kid is on the ketogenic diet. Cole is not eating enough of his meals, to properly use the diet for it's full effect. Instead of all of that fat bonding to the carb+protein and then burning the fat to produce ketosis, his body is storing the fat. Pants that I had completely tightened the waist on two months ago, don't fit right now. So, Mr. Chunky will finally start to lose a little and hopefully take full advantage of high ketones. Hey, McDonalds three times a day everyday will make anyone get a muffin top! (Except maybe Brian) Cole has never been really interested in eating. So, now he can eat the good stuff and the yucky stuff can go in the tube. Next time he brings on one of his famous hunger strikes, we can just mix up KetoCal formula and push it straight through. It will be great for traveling and also to make sure he gets enough fluids. He forgets to do things, like drink, when he is distracted. Hopefully with better diet control, it will equal better seizure control. We don't want him to end up like a few other kids on this diet and turn completely anorexic. He needs to enjoy food. Right now it's just traumatic. The diet is important enough for controlling the drop seizures alone that we need to stay on it.
His nutrition will drastically improve. Right now, with the med fight, he is only taking 2 of 9 meds on a regular basis. There are not a lot of vitamins and minerals in heavy cream and he is not being supplemented with other foods. Watermelon isn't really known for it's nutritional value. If Cole gets bruised, which he has been a lot lately, it stays for 2 1/2 weeks. One of his IV sites from his previous eye examination, did not heal for well over a month. There just isn't enough good stuff in his system to promote healing. We are hoping to get him back on track soon so that he doesn't end up with a cold that turns into pneumonia, or something worse.
These are just a couple of the reasons that he had this surgery today. It's something that took a lot of hard thought, but I am loving it already! When we just slipped that Keppra in right after the O2 crisis, it was like a small piece of burden was being lifted from my shoulders. I really think that it will help our relationship too. I don't think that I am getting out of the "mean mommy" role in his eyes anytime soon. Yet, if he gets to the point where I really need to give him something; I won't have to blow in his face, plug his nose, try to measure what went in and what went out by a small puddle on the floor, coerce him to swallow, or a myriad of other things I have tried. I have a friend who wishes that all kids were born with g-tubes ;)
I'll post more of an update on our social butterfly tomorrow. What? You didn't think that he would refrain from flirting with the nurses, hitting the halls after surgery and being in pain, did you? This is Cole we're talking about here! Mini Hulk has super strength and super lady killer skills.
There are a lot of reasons that we did this. We (Cole included) are tired of the daily fight with medication. It is a wrestling match each time and rarely do I get it all in. Something usually ends up coming out on me, the furniture, clothes, etc. I don't know how many shirts I have had to throw away that have been a casualty of fish oil. Man, that stuff stinks! Even if you pre-treat and wash in hot water immediately. I can still smell it after three or four washes and the oil just seeps in and stains. Both of us being naked for meds in an effort to save clothes, really doesn't work ;) We know that Cole is going to have to take medication for the rest of his life. Now, thanks to this nifty tube, I won't have to sacrifice cute clothes, or do a headlock for regular meds ever again! (fingers crossed) I think Versed will still cause me to have to pull out the wrestling skills.
Cole has been gaining too much weight. "What? I thought kids who are losing weight get tubes?" If that is what you are thinking, you're right...unless the kid is on the ketogenic diet. Cole is not eating enough of his meals, to properly use the diet for it's full effect. Instead of all of that fat bonding to the carb+protein and then burning the fat to produce ketosis, his body is storing the fat. Pants that I had completely tightened the waist on two months ago, don't fit right now. So, Mr. Chunky will finally start to lose a little and hopefully take full advantage of high ketones. Hey, McDonalds three times a day everyday will make anyone get a muffin top! (Except maybe Brian) Cole has never been really interested in eating. So, now he can eat the good stuff and the yucky stuff can go in the tube. Next time he brings on one of his famous hunger strikes, we can just mix up KetoCal formula and push it straight through. It will be great for traveling and also to make sure he gets enough fluids. He forgets to do things, like drink, when he is distracted. Hopefully with better diet control, it will equal better seizure control. We don't want him to end up like a few other kids on this diet and turn completely anorexic. He needs to enjoy food. Right now it's just traumatic. The diet is important enough for controlling the drop seizures alone that we need to stay on it.
His nutrition will drastically improve. Right now, with the med fight, he is only taking 2 of 9 meds on a regular basis. There are not a lot of vitamins and minerals in heavy cream and he is not being supplemented with other foods. Watermelon isn't really known for it's nutritional value. If Cole gets bruised, which he has been a lot lately, it stays for 2 1/2 weeks. One of his IV sites from his previous eye examination, did not heal for well over a month. There just isn't enough good stuff in his system to promote healing. We are hoping to get him back on track soon so that he doesn't end up with a cold that turns into pneumonia, or something worse.
These are just a couple of the reasons that he had this surgery today. It's something that took a lot of hard thought, but I am loving it already! When we just slipped that Keppra in right after the O2 crisis, it was like a small piece of burden was being lifted from my shoulders. I really think that it will help our relationship too. I don't think that I am getting out of the "mean mommy" role in his eyes anytime soon. Yet, if he gets to the point where I really need to give him something; I won't have to blow in his face, plug his nose, try to measure what went in and what went out by a small puddle on the floor, coerce him to swallow, or a myriad of other things I have tried. I have a friend who wishes that all kids were born with g-tubes ;)
I'll post more of an update on our social butterfly tomorrow. What? You didn't think that he would refrain from flirting with the nurses, hitting the halls after surgery and being in pain, did you? This is Cole we're talking about here! Mini Hulk has super strength and super lady killer skills.
Friday, December 3, 2010
Performance
Cole got my memo on performing...a day late.
We woke up ever so early to be here by 6:30 am. However, before we were even checked in, Cole had around 10 complex-partial seizures in the admit area. The waiting room was so packed, there were people down the hall. Craziness. SO, we had to give him Klonopin before we even started the process. Why couldn't he have done this yesterday at school? *sigh* This kid ;)
The surgery went well. After explaining to anyone that would listen about the diet and "no Dextrose", we were confident. We like the surgeon and the anesthesiologist has actually worked with Mini Hulk before!
Cole went through his usual Angry Elf phase (name that movie) when he woke up, but it was a little toned down thanks to the prep talk we gave the team. Nice! We are on the third floor now, which I might say out of all of the floors of this hospital (we've used them all), is my favorite. Private bathroom, no sloping floor, and a full size bed for the parents, not just the pull out chair. Once again, nice!
Not so nice is that Cole's oxygen dropped to where his sats were at 10% (that's low) when I was trying to give him his Keppra. Champion breath holder. I warned the nurse, told her everything IV today would make every one's life easier. The doctor wouldn't order the IV Keppra, so our lovely nurse and a student got a scare and watched our baby turn blue. Mom knows best! We got to use the tube for the first time and just pushed the rest of that med through ;)
This is the only pic we have so far as Mini Hulk has been sleeping off his incredibly high doses of meds with a nice, long winters nap. Mom on one side; Dad on the other.
We'll update later and show everyone the new tube! So far, a good hospication.
We woke up ever so early to be here by 6:30 am. However, before we were even checked in, Cole had around 10 complex-partial seizures in the admit area. The waiting room was so packed, there were people down the hall. Craziness. SO, we had to give him Klonopin before we even started the process. Why couldn't he have done this yesterday at school? *sigh* This kid ;)
The surgery went well. After explaining to anyone that would listen about the diet and "no Dextrose", we were confident. We like the surgeon and the anesthesiologist has actually worked with Mini Hulk before!
Cole went through his usual Angry Elf phase (name that movie) when he woke up, but it was a little toned down thanks to the prep talk we gave the team. Nice! We are on the third floor now, which I might say out of all of the floors of this hospital (we've used them all), is my favorite. Private bathroom, no sloping floor, and a full size bed for the parents, not just the pull out chair. Once again, nice!
Not so nice is that Cole's oxygen dropped to where his sats were at 10% (that's low) when I was trying to give him his Keppra. Champion breath holder. I warned the nurse, told her everything IV today would make every one's life easier. The doctor wouldn't order the IV Keppra, so our lovely nurse and a student got a scare and watched our baby turn blue. Mom knows best! We got to use the tube for the first time and just pushed the rest of that med through ;)
This is the only pic we have so far as Mini Hulk has been sleeping off his incredibly high doses of meds with a nice, long winters nap. Mom on one side; Dad on the other. We'll update later and show everyone the new tube! So far, a good hospication.
Subscribe to:
Posts (Atom)
