I am TERRIBLE about updating this thing lately and after several people have asked how the appointment went, I knew I needed to get it done. Today is a good day for something like this! It's snowing, the wind chill is something like negative 30, Sam has the day off so he is putting together Christmas Legos with Darren, the other kids are keeping themselves occupied, and I don't feel like doing laundry! :)
Overall, the appointment went well. Dr. Cooper (the urologist) was VERY happy with the newest kidney ultrasound. On the last scan, there was some inflammation on the kidneys (which is a bad thing) but this one showed just a little inflammation on 1 kidney and none at all on the other, so he was very pleased with this and said we should just keep with the 3 times a day urinary catheters. Kai tolerates them very well. They are definitely getting much easier for us now too. We asked Dr Cooper about moving up a size in the catheters and he thought that would be fine. This tiny bit of difference in cath size makes a WORLD of difference in the speed that the urine comes out. Wowza...I couldn't believe it. Kai doesn't seem to notice a difference and it takes about a 3rd of the time, so that is pretty nice too. The only thing Dr. Cooper seemed a little concerned about was the fact that Kai has lots of bladder spasms. That's why he has wet diapers and stuff-the urine leaks out during these spasms. Since the bladder is a muscle, the continuous contractions make it bigger, just like any muscle would with lots of contractions. However, if the bladder wall starts to thicken, that is a bad thing, so he is watching that as well. He mentioned that at Kai's next appointment he wants to do another urodynamic test so we'll see what that says I guess.
The newest major thing we are doing are daily "bowel cleanouts" (aka enemas). My little trooper is definitely NOT a fan but a VERY dear someone sent him a new Kindle Fire complete with kid safe case and Amazon gift card so that has helped a TON that he gets to play "my bery own Kinnel" with some new games and new Diego episodes. Every time I look at that Kindle I wish I could give you a big hug Very Dear Someone. It means so much.
Anyway, basically every evening Kai lays on his side and we put this catheter thing in his bum. We take tap water in a syringe and put it in one head of this catheter and it fills up a balloon inside his bottom. Then we pull it back and the balloon basically acts as a stopper so that the enema solution doesn't come out as soon as we put it in. Then we put a solution of saline and glycerin in, put a cap on the catheter and he has to lay there for around 5 minutes while it does it's thing. This is when he usually starts to fuss and say his tummy hurts because the glycerin causes cramping. That's what it's supposed to do because the cramping is the muscles moving the stool along. After about 5 minutes we put his urinary catheter in, put a cap on that, move him to the potty, take out the urinary cath cap, remove the water from the little balloon thing, and in a perfect world everything just drains nicely in the toilet. It's not usually that easy though. We are still trying to figure out the right ratio of glycerin and saline and if we should give him his Miralax still and if so how much and all that fun stuff. Every person is different so there is no perfect formula and it can change daily depending on what he has eaten, etc just like a normal persons stool would change based on diet. Plus, he is obviously not a fan of the tummy cramping and it absolutely breaks my heart when he cries. The other day, I decided that I would just give it to him straight and be honest with him since he is such a little smartie. I told him that the tummy cramps make him toot and then his poops come out and that makes his tummy feel better. So now when he has a cramp, I say "what does an tummy owie mean?" and he will say "I have toot coming" and what happens after the toot? and he will say "my tummy feel better" and that seems to calm him down a little bit. He has to sit there for a while-usually around 30 minutes or so, but normally he does ok and just plays his Kindle or Sam's phone. Sometimes if he has really bad cramps, I sit by him and just rub his tummy a little and kind of talk him thru the cramps for lack of a better description. I'm glad we just have to do it once a day that's for sure! Sam has done it most of the time, but I am making myself do it too so when he has to travel for work, etc I can do it. Right now it's kind of a 2 person job to move him from the changing table to the toilet without causing a huge mess :) but we are getting it figured out. We've gone thru lots of Clorox wipes and have learned to just move the rug out of the way. HA! :) This is why I wanted to start this plenty ahead of when he was in preschool. I knew it would take some time for us to learn what we are doing and hopefully this way we will have it all figured out when he goes to school.
So that's where we are now! We have an appointment on the 8th with the neurosurgeon with some x rays and stuff, so that's next up on the agenda! Not really sure what he will do but I do want to ask him about repairing nerves and see what he says. With all the advances in technology I just feel like there must be SOMETHING out there, but then again our other doctors are pretty on top of things so I think they would have told us. Guess we'll see. Then we go back to see Dr. Cooper again in 3 months for another ultrasound and urodynamic test. We will probably see Josh-the NP that helped us with the enema stuff-again to maybe do some fine tuning and ask questions.
SO that's the latest in the continuing saga of Brandt doctors appointment! :) Thanks so much for all your interest and prayers. They mean a lot! Stay warm everyone!!! :)
Monday, December 30, 2013
Monday, December 16, 2013
Off To IA City We Go.....
I was talking to a friend the other night and she asked about Kai and commented how she keeps up with him via my blog and I realized that I haven't done a very good job of updating lately. Shocking since I have SO much free time these days....HA! :) BUT tomorrow is a another big Iowa City appointment, and as I have said on here many times in the past, I have a hard time sleeping the night before them, so I figured I might as well do an update now!
Kai has been doing really super with the catheters. We currently cath him 3 times a day-morning, before his nap, and then again before bed. He does really great. We say "Ok Buddy-time to go potty!" and he VERY seldom complains. Being able to play the Kindle or Mommy/Daddy's phones while being cathed is a rather large draw as you can imagine, but hey...if it helps, awesome. When we first started, he would sometimes complain of pain but hasn't mentioned anything along that line in a really long time. I think his body is just getting used to it more so now than it was. We have also stopped drawing the urine out with a syringe (aka aspirating) because it seemed like that caused him the most discomfort. It's quite comical how we do it now actually, but again....hey-if it works, let's roll with it. We lay him down, do all the cleaning, etc. that is required, insert the catheter and then he stands up and the urine drains into a measuring cup that I purchased from the dollar store for this specific purpose. I have only caught him using it to get a drink from the sink once or twice (blleeeeecchhh!!! I rinse it after each use, but still...SOOO GROSS KID!) I have a picture, but for his sake in 20 years, I won't post it on here. :) It's a picture of him from the back, standing in the bathroom wearing only a shirt and socks, playing Sam's phone "going potty". His skinny little legs and skinny little bum are stinkin' adorable. I can't help but smile every time I look at it.
Overall the experience has been a LOT easier than I thought it would be. Of course it's not fun, and it is pretty time consuming as it's just another thing to add to my day, but it works. This is our normal now, and we have tried to just treat it as such. We tell the older kids that this is just the way Kai goes potty and it's just a little different than normal, but that's HIS normal. They are fine with it, and Kai follows their example so, like I said, it's just our normal. It's cute-sometimes in the morning while I am getting the stuff ready Kai will be laying on the floor of the bathroom watching Diego or playing a game on the Kindle and Claire just comes up and lays by him or on her tummy with her head by his and they watch whatever or she "helps" him play the dot to dot or letter matching or whatever they are doing. They love to watch "The Pirates Who Don't Do Anything" and laugh hysterically at who knows what. Things get a little dicey when they start to dance to some of their favorite songs on it as you can imagine. It's a little tricky to insert a time little tube into a tiny little hole when the person attached to said little hole is busting a move and "dancing like a pirate" :) so Mom usually has to call a halt for a sec, but seems like that is just part of the fun for them.
Our visit tomorrow is to see Dr. Cooper, Kai's urologist. They are going to do another ultrasound to see if the catheterization is working to alleviate the stress/damage on his kidneys. If not, then I think we have to increase the amount of daily caths, but I don't foresee that happening. Who knows....I've stopped trying to guess!
About a month or so ago, Sam and I had both been thinking that it was time to look into options along the lines of a bowel regimen also. Sam mentioned something and I had been doing a lot of thinking about it, but hadn't mentioned it to him yet, so I took that as a sign that it was time. Kai will be going to preschool next year (GULP....it's only 2 mornings a week, so I think I should be fine.....I THINK, anyway....) so I wanted to make sure that we had time to get as many "kinks out" as we could prior to him starting school. It may seem weird, but it has always bothered me a LOT to think that he might smell at school and kids will make fun of him for it. He will most definitely still be wearing pull-ups when he goes but those can be pretty well hidden and at that age aren't really that big of a deal. However, no joke, Kai is the STINKIEST child I have ever met. Come to find out, it's because his bowels don't move the stool along like a normal person so that gas basically just has time to sit there and ferment. Let's just suffice to say, when Kai has gas, you can DEFINITELY tell...whew!!!! Plus, he is young enough that he really doesn't know any different. Kind of like going potty. He doesn't think anything of it because that's the way it's always been and if we can have that with his bowel regimen too, it will make things much easier in the long run.
I called a nurse practitioner that actually works with Dr. Pitcher (Kai's first surgeon). His name is Josh and he is really great. He does a great job of understanding and making suggestions and I feel very comfortable with him. He had talked to us quite a while ago about several things to think about whenever we decided to start doing bowel stuff, so I felt like he would be the best resource for us. I called him and mentioned that we would like to start making some decisions, etc so we have an appointment with him tomorrow after we finish with Dr. Cooper. I am pretty sure, unless Josh can find a reason not to, that we will begin bowel clean outs. When I talked to him on the phone, it sounds like we will just start with regular enemas. They will be a mixture of saline and glycerin (isn't that the stuff that explodes? Maybe I should warn them again about his really bad gas......). I was concerned because right after his tethered cord surgery they did several enemas and it just built up inside until it caused a massive explosion of crazy pooping. I would rather avoid that if at all possible, which I think is a pretty reasonable request. I think that's what the glycerin is for-to make sure that doesn't happen, but I am sure I will find out more tomorrow. Then after we can basically prove that we can do the enemas and keep up with his schedule/cleanouts/whatever they are called, they are seriously talking about doing a cecostomy-at least I think that's what it's called. From what I understand it's where they put a spot in his side where a tube is inserted and we can basically do an enema from the top so it cleans out more. Again...not sure about all this but am pretty sure we will find out more tomorrow.
These nights are tough. I have so much to be thankful for yet I have a hard time sleeping. It's almost like I lay in bed and just feel so sad for Kai. Sometime I get mad because I HATE this. I HATE that he is going to be different but most of all it absolutely breaks my heart to think that something I allow to happen to him, is going to cause him pain. Josh told me that the glycerin will cause cramping, which isn't unusual. Think about when you have to poop really bad, a lot of times you have a stomach ache and what mom among us hasn't responded to a child complaining of a tummy ache with "are you sure you don't need to poop?". However, he hasn't ever really experienced that. He gets tummy aches from constipation I think at times, but never like this. So even though it's technically a 'good thing', no tummy ache is a 'good thing' when you are 2 years old. Nights like this, honestly, I just want to quit. I just want to wake up and realize this really isn't happening and I can worry about things like if my baby is up to date on immunizations, not wondering if the medical supply company that we get catheter supplies from also has enema stuff. I want to hate the pain from shots, not the pain from a surgical incision just so he can go poop and not stink at school. I want to make appointments with family doctors, not 20 different specialists at a Children's Hospital. I don't want the stress, the worry, the literally physical hurt in my heart that at time seems like it just wants to overwhelm me. I just don't want to do it anymore. Sometimes, I think "Why me God? Why MY baby? It's not fair". But then, that still small voice answers "Why not you?" and I really can't answer that one. I really don't have a good reason why not because I don't think there is one. So I load up my playlist of songs that speak to my heart at times like this and sing along, sometimes with tears running down my cheeks. Tonight one of those songs was "All I Can Do" by Mikeschair. The chorus is this:
Kai has been doing really super with the catheters. We currently cath him 3 times a day-morning, before his nap, and then again before bed. He does really great. We say "Ok Buddy-time to go potty!" and he VERY seldom complains. Being able to play the Kindle or Mommy/Daddy's phones while being cathed is a rather large draw as you can imagine, but hey...if it helps, awesome. When we first started, he would sometimes complain of pain but hasn't mentioned anything along that line in a really long time. I think his body is just getting used to it more so now than it was. We have also stopped drawing the urine out with a syringe (aka aspirating) because it seemed like that caused him the most discomfort. It's quite comical how we do it now actually, but again....hey-if it works, let's roll with it. We lay him down, do all the cleaning, etc. that is required, insert the catheter and then he stands up and the urine drains into a measuring cup that I purchased from the dollar store for this specific purpose. I have only caught him using it to get a drink from the sink once or twice (blleeeeecchhh!!! I rinse it after each use, but still...SOOO GROSS KID!) I have a picture, but for his sake in 20 years, I won't post it on here. :) It's a picture of him from the back, standing in the bathroom wearing only a shirt and socks, playing Sam's phone "going potty". His skinny little legs and skinny little bum are stinkin' adorable. I can't help but smile every time I look at it.
Overall the experience has been a LOT easier than I thought it would be. Of course it's not fun, and it is pretty time consuming as it's just another thing to add to my day, but it works. This is our normal now, and we have tried to just treat it as such. We tell the older kids that this is just the way Kai goes potty and it's just a little different than normal, but that's HIS normal. They are fine with it, and Kai follows their example so, like I said, it's just our normal. It's cute-sometimes in the morning while I am getting the stuff ready Kai will be laying on the floor of the bathroom watching Diego or playing a game on the Kindle and Claire just comes up and lays by him or on her tummy with her head by his and they watch whatever or she "helps" him play the dot to dot or letter matching or whatever they are doing. They love to watch "The Pirates Who Don't Do Anything" and laugh hysterically at who knows what. Things get a little dicey when they start to dance to some of their favorite songs on it as you can imagine. It's a little tricky to insert a time little tube into a tiny little hole when the person attached to said little hole is busting a move and "dancing like a pirate" :) so Mom usually has to call a halt for a sec, but seems like that is just part of the fun for them.
Our visit tomorrow is to see Dr. Cooper, Kai's urologist. They are going to do another ultrasound to see if the catheterization is working to alleviate the stress/damage on his kidneys. If not, then I think we have to increase the amount of daily caths, but I don't foresee that happening. Who knows....I've stopped trying to guess!
About a month or so ago, Sam and I had both been thinking that it was time to look into options along the lines of a bowel regimen also. Sam mentioned something and I had been doing a lot of thinking about it, but hadn't mentioned it to him yet, so I took that as a sign that it was time. Kai will be going to preschool next year (GULP....it's only 2 mornings a week, so I think I should be fine.....I THINK, anyway....) so I wanted to make sure that we had time to get as many "kinks out" as we could prior to him starting school. It may seem weird, but it has always bothered me a LOT to think that he might smell at school and kids will make fun of him for it. He will most definitely still be wearing pull-ups when he goes but those can be pretty well hidden and at that age aren't really that big of a deal. However, no joke, Kai is the STINKIEST child I have ever met. Come to find out, it's because his bowels don't move the stool along like a normal person so that gas basically just has time to sit there and ferment. Let's just suffice to say, when Kai has gas, you can DEFINITELY tell...whew!!!! Plus, he is young enough that he really doesn't know any different. Kind of like going potty. He doesn't think anything of it because that's the way it's always been and if we can have that with his bowel regimen too, it will make things much easier in the long run.
I called a nurse practitioner that actually works with Dr. Pitcher (Kai's first surgeon). His name is Josh and he is really great. He does a great job of understanding and making suggestions and I feel very comfortable with him. He had talked to us quite a while ago about several things to think about whenever we decided to start doing bowel stuff, so I felt like he would be the best resource for us. I called him and mentioned that we would like to start making some decisions, etc so we have an appointment with him tomorrow after we finish with Dr. Cooper. I am pretty sure, unless Josh can find a reason not to, that we will begin bowel clean outs. When I talked to him on the phone, it sounds like we will just start with regular enemas. They will be a mixture of saline and glycerin (isn't that the stuff that explodes? Maybe I should warn them again about his really bad gas......). I was concerned because right after his tethered cord surgery they did several enemas and it just built up inside until it caused a massive explosion of crazy pooping. I would rather avoid that if at all possible, which I think is a pretty reasonable request. I think that's what the glycerin is for-to make sure that doesn't happen, but I am sure I will find out more tomorrow. Then after we can basically prove that we can do the enemas and keep up with his schedule/cleanouts/whatever they are called, they are seriously talking about doing a cecostomy-at least I think that's what it's called. From what I understand it's where they put a spot in his side where a tube is inserted and we can basically do an enema from the top so it cleans out more. Again...not sure about all this but am pretty sure we will find out more tomorrow.
These nights are tough. I have so much to be thankful for yet I have a hard time sleeping. It's almost like I lay in bed and just feel so sad for Kai. Sometime I get mad because I HATE this. I HATE that he is going to be different but most of all it absolutely breaks my heart to think that something I allow to happen to him, is going to cause him pain. Josh told me that the glycerin will cause cramping, which isn't unusual. Think about when you have to poop really bad, a lot of times you have a stomach ache and what mom among us hasn't responded to a child complaining of a tummy ache with "are you sure you don't need to poop?". However, he hasn't ever really experienced that. He gets tummy aches from constipation I think at times, but never like this. So even though it's technically a 'good thing', no tummy ache is a 'good thing' when you are 2 years old. Nights like this, honestly, I just want to quit. I just want to wake up and realize this really isn't happening and I can worry about things like if my baby is up to date on immunizations, not wondering if the medical supply company that we get catheter supplies from also has enema stuff. I want to hate the pain from shots, not the pain from a surgical incision just so he can go poop and not stink at school. I want to make appointments with family doctors, not 20 different specialists at a Children's Hospital. I don't want the stress, the worry, the literally physical hurt in my heart that at time seems like it just wants to overwhelm me. I just don't want to do it anymore. Sometimes, I think "Why me God? Why MY baby? It's not fair". But then, that still small voice answers "Why not you?" and I really can't answer that one. I really don't have a good reason why not because I don't think there is one. So I load up my playlist of songs that speak to my heart at times like this and sing along, sometimes with tears running down my cheeks. Tonight one of those songs was "All I Can Do" by Mikeschair. The chorus is this:
All I can do is thank you
for this life I never deserved
wanna thank you for the grace
I know I don't have to earn
You love me, You love me
Your mercy is proof
all I can do is say thank you
How can I do anything but thank God for the life that I have? I have an amazing best friend for a husband, awesome kids who drive me crazy and make me want to hug them to death every. single. day, a tiny house that is still a home, a small budget that squeaks, but still allows me to experience the magic that is Christmas morning Santa surprises on the faces of my children, wonderful friends and family, and most of all a God who loves me beyond what I can even fathom? How can I be anything but grateful for that life? This isn't to say that I walk around basking in this knowledge daily-I complain, I cry, and I get overwhelmed, but somehow in that craziness and even despair at times, I know in the deepest part of my soul that I am never alone. There is plan to all this. I am the first to admit, I have a hard time seeing what it may be, but it isn't designed for me to see the big picture at this point. It's designed for me to keep putting one foot in front of the other, sometimes on a minute by minute basis, and to enrich my faith in a Person that I have never seen with my physical eyes.
A month or so ago, I took some time to read my Bible on a particular day when I was feeling very overwhelmed and sad, and these verses jumped out at me. I have marveled at them many times since then because they stood out to me in a completely different way that day. It's Psalms 139:13-16. It contains a verse that we see often "I am fearfully and wonderfully made". But that day, I kept reading and I am so glad I did.
For thou hast possessed my reins: thou hast covered me in my mother's womb.
I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well.
My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth.
Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.
It struck me that day that this was no accident how my son was created. I asked Dr. Menezes right when we found out about Kai's issues if there was anything that I could have possibly done that could have caused the tethered cord and he said it was that way probably before I knew I was pregnant. Yet God knew. I read those verses as if Kai was speaking them and it took on a whole new meaning in my eyes and my heart. This is how Kai was CREATED by God himself. This wasn't an accident or even a "defect". It was exactly how God meant for my son to be! Again, this is not at all to say that I still don't get angry or upset, but it seems lately I always come back to this. My son, my baby, was wonderfully made by the Creator of the universe in exactly the way he was supposed to be!
I hope this doesn't come across as preachy or that I think I am better than anyone. I hope it's just the opposite actually. I blog about this stuff for several reasons. One is for myself. There are times that I go and reread stuff that I have written in the past and I can see how good has come from that and there are times that I just need to give myself a little pep talk and say to myself "you did that, you can do this too". It's my way of venting. I usually blog late at night (it's midnight as I type this) so I can sit and cry if I need to and just release frustrations and feelings with words. Its a very cathartic process because I usually feel much better when I am done. I would feel much better even if I never published these posts. But I do publish them because I feel like somehow, someway, maybe I can help someone else going thru a tough time. I can help them to realize that it's ok to be sad and hurt and angry and overwhelmed but it doesn't have to end there. I want to share with someone else what has given me encouragement and help when I am feeling those exact same feelings in hopes that it will encourage them too. I just sit down and type what comes into my head. Sometimes they are short and sometimes, well.....sometimes they are this post. :)
Other than all his crazy issues, Kai is quite the little guy. Currently he is obsessed with the following: Lightning McQueen, Diego, anything sports related, Pirates Who Don't Do Anything, and Maters Tall Tales. He loves running around pretending he is a racecar and is pretty sure he can run MUCH faster if he is wearing his tennis shoes. Him and Claire are great pals and have a lot of fun pretending all sorts of things together. He is constantly trying to "play" something electronic "dis for a yittle bit, k?" and I have to watch my gum stash like a hawk. He is very typical in that he loves machinery of all kinds, and waits anxiously on Monday mornings so he can wave at the garbage truck. The snow has brought new excitement in the form of snowplows! He tells me that him and Sam (Wardell) are BEST BEST BEST fwiends in da WWHHOOOLLL WURLD! He's a smart little cookie and I love watching him play some of the games on the kindle and stuff just to see what he knows! :) He is such a funny kid and loves to make his siblings laugh-usually at mealtime by doing something naughty. He loves chocolate milk and won't touch white milk just like his Grandpa Harbaugh. He's pretty sure he's awesome at "wesselin'" and is does a great job protecting his Mommy from those imaginary bad guys with his "inja" kicks. :) He gives really good huggies and thinks he's hilarious when he gives me a zerbert instead of a kiss at bedtime.
And now it's REALLY late, so I really need to go to bed so I can be semi coherent tomorrow. Sam, Kai and I would appreciate your prayers tomorrow. Pray that Sam and I will ask the questions that need to be asked and make the right decisions in regards to our spunky little man. If you wouldn't mind asking God to be a little close to my Mommy heart tomorrow, I would appreciate that as well.
I will try to do another update soon to let you know the results of the appointment and please know that we sincerely appreciate all the prayers and concern for us. It's nice to feel loved! :)
All I can do is thank You
For this life I never deserved
Wanna thank You for the grace
I know I don't have to earn
You love me, You love me
Your mercy is proof
All I can do is say thank You
All I can do is say thank You
Read more at http://www.lyrics.com/all-i-can-do-thank-you-lyrics-mikeschair.html#3Wyp9vycI2oIMDft.99
For this life I never deserved
Wanna thank You for the grace
I know I don't have to earn
You love me, You love me
Your mercy is proof
All I can do is say thank You
All I can do is say thank You
Read more at http://www.lyrics.com/all-i-can-do-thank-you-lyrics-mikeschair.html#3Wyp9vycI2oIMDft.99
All I can do is thank You
For this life I never deserved
Wanna thank You for the grace
I know I don't have to earn
You love me, You love me
Your mercy is proof
All I can do is say thank You
All I can do is say thank You
Read more at http://www.lyrics.com/all-i-can-do-thank-you-lyrics-mikeschair.html#3Wyp9vycI2oIMDft.99
For this life I never deserved
Wanna thank You for the grace
I know I don't have to earn
You love me, You love me
Your mercy is proof
All I can do is say thank You
All I can do is say thank You
Read more at http://www.lyrics.com/all-i-can-do-thank-you-lyrics-mikeschair.html#3Wyp9vycI2oIMDft.99
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