It's Monday! The start of a new (COLD!!) week.
Carson dropped his iPad on the kitchen floor last week and shattered the screen. Because it has been so cold and snowy I haven't taken it to Best Buy yet to get it fixed so I have been letting him use Baylee's. He is now working on apps that are geared for older kids which is amazing and hilarious at the same time. He is working with Coop Fractions, which is exactly what it sounds like. It is a chicken in a coop laying eggs with fractions on them and you have to answer questions. He is getting really good at some of them.
He is also playing Bugs and Buttons, Bugs and Buttons 2 and Bugs and Buttons 3. Each of these deal with math and numbers. He is starting to learn how to tally and sort items. He is also using one of her apps that is first-fifth grade sight words. You can play word BINGO, sort contractions and all sorts of other phonics related games. He is getting really good. He really likes playing BINGO. It's amazing to me how he is so smart in so many areas but I still catch him trying to chew on electrical cords that are plugged into the wall. The disconnect between learning on an iPad and real life is depressing. I mean it's great, REALLY great that he is able to learn as much as he does and be able to retain the knowledge, but at the same time I feel so sorry for him because he will never be able to hold down a 'real' job and show people his potential.
This weekend I joined up with JDRF of Southwest Ohio and submitted an application to be a team captain for a fundraising walk in June at Kings Island for juvenile diabetes. We are under the name Carson's Crusaders. I know I probably won't raise much money but just knowing that we're out there doing something makes me feel better about things. Maybe there will be some good information there or even some families that live close to us.
I'm at the point with my mom where I am trying not to call her so much. I think it's probably best if I just let things go for a while. I'm not saying disown her or anything but it has been so hard trying to talk to her about my feelings etc and have her just throw them in my face and tell me I need to change my attitude and suck it up. Yeah, no shit I have to deal with all of it whether I want to or not. It's not like I'm saying I quit or anything. I just wanted someone to LISTEN but all she wants to do is just throw it in my face. I was emailing back and forth with my former boss on Saturday and telling her about how my mom just doesn't seem to get it when it comes to all the crap I am dealing with right now. She understands more than anyone else I have ever met because of all of the things she has gone through with her daughter. She told me when she gets back in town we will have to meet up for lunch one day. It will be nice to just get out of the house.
Carson's school was cancelled for today and temps are quickly dropping back into the single digits so I'm not really sure what we can get into today but whatever it is, I hope it's messy.
XX
Monday, January 27, 2014
Thursday, January 23, 2014
Home School Options
I, like most of the country, am so tired of this winter! Today I think the high was a whopping 7 degrees. Baylee has had school (at regular time) yesterday and today which is weird to me because a few weeks ago when it was this cold they closed the schools down. All of the districts around us are either closed or on a delayed schedule but not hers. I am thinking it probably has something to do with the fact that they have already used up all of their snow days but at the same time it is painful to be out for just a few minutes. I feel bad for the bus drivers having to open the doors all the time to let kids on and off the bus.
One thing I am really excited about is today I got my first homeschooling catalog in the mail! The company is called Timberdoodle. I found them by just doing a search on Bing. They offer three levels of homeschooling kits that you buy each year and it even gives you guidelines on when to teach each thing that is in their kit. They have a video on their website that also says if you have a child who is a level higher in, say, reading you can call them and they will swap out the reading book in the grade you are buying for another one.
Looking through the catalog I have to admit I am stuck between the Pre-K curriculum and the kindergarten one. There are things in each that I think would be beneficial to Carson but I'm not sure how much mix-matching they will let me do. I am still waiting until Carson has his evaluation next month to decide anything 100% - not to mention I still need to talk to some people in the district to even see what my options are for him. I also don't want to spend $600 on a kit that I won't be able to use if the district says that I can't homeschool him.
The district that Baylee is in apparently has a special school inside it that is for autistic kids. The district Carson is in does not offer such schooling. I think if they deny my request to homeschool then I will have to look into the autistic program and see what they can offer Carson. Here in Ohio we are given $20,000 a year to pay for programs like that for kids who need the extra support. The family that we went to visit in Toledo over the summer just moved to Illinois and they don't have that funding anymore. When she posted on Facebook how mad she was at the school system everyone around her seemed stunned that we are offered the money here. They had never heard of it before. Now, at this point WE have not officially been offered any financial help for schooling. Amber mentioned it a long time ago at school but it hasn't been brought up since.
Speaking of Amber, I got an e-mail from her that they canceled school for Monday so it looks like it'll just be me and the boy alone again. He cracked me up earlier today. He was using Baylee's iPad since he shattered the screen on his yesterday. He was playing sushi monster (not well) and was trying to make an in-app purchase. There are parental controls on those apps and it was asking the question: 2x6=? [ ]. Carson's answer? CAKE. OMG it was so funny. Such logic.
And to add more stress to my stress (and my twitchy eye) now our roof is leaking! Every room along the front of our house has water spots on the ceilings. We haven't even been in this house 10 years and we are the first occupants! I'm letting Mike take care of the details for this one. And we're getting more snow tomorrow and Saturday too. At this point I just have to laugh. What else can you do?
XX
One thing I am really excited about is today I got my first homeschooling catalog in the mail! The company is called Timberdoodle. I found them by just doing a search on Bing. They offer three levels of homeschooling kits that you buy each year and it even gives you guidelines on when to teach each thing that is in their kit. They have a video on their website that also says if you have a child who is a level higher in, say, reading you can call them and they will swap out the reading book in the grade you are buying for another one.
Looking through the catalog I have to admit I am stuck between the Pre-K curriculum and the kindergarten one. There are things in each that I think would be beneficial to Carson but I'm not sure how much mix-matching they will let me do. I am still waiting until Carson has his evaluation next month to decide anything 100% - not to mention I still need to talk to some people in the district to even see what my options are for him. I also don't want to spend $600 on a kit that I won't be able to use if the district says that I can't homeschool him.
The district that Baylee is in apparently has a special school inside it that is for autistic kids. The district Carson is in does not offer such schooling. I think if they deny my request to homeschool then I will have to look into the autistic program and see what they can offer Carson. Here in Ohio we are given $20,000 a year to pay for programs like that for kids who need the extra support. The family that we went to visit in Toledo over the summer just moved to Illinois and they don't have that funding anymore. When she posted on Facebook how mad she was at the school system everyone around her seemed stunned that we are offered the money here. They had never heard of it before. Now, at this point WE have not officially been offered any financial help for schooling. Amber mentioned it a long time ago at school but it hasn't been brought up since.
Speaking of Amber, I got an e-mail from her that they canceled school for Monday so it looks like it'll just be me and the boy alone again. He cracked me up earlier today. He was using Baylee's iPad since he shattered the screen on his yesterday. He was playing sushi monster (not well) and was trying to make an in-app purchase. There are parental controls on those apps and it was asking the question: 2x6=? [ ]. Carson's answer? CAKE. OMG it was so funny. Such logic.
And to add more stress to my stress (and my twitchy eye) now our roof is leaking! Every room along the front of our house has water spots on the ceilings. We haven't even been in this house 10 years and we are the first occupants! I'm letting Mike take care of the details for this one. And we're getting more snow tomorrow and Saturday too. At this point I just have to laugh. What else can you do?
XX
Wednesday, January 22, 2014
Diabetes Clinic
Today Carson had his first diabetes check since leaving the hospital. They first had me meet with a social worker, which in my stuck-up days I would've bitched about it and complained and refused to do it. But guess what? It's MANDATORY. She was a really nice girl. We sat in a room with a table and a few chairs and just hung out. I fed Carson his breakfast while we chatted about school options and caregiver classes if anyone else in my family was interested (not a chance in Hell unfortunately). We talked about my stress and how it is completely normal to feel overwhelmed and under appreciated. I already knew that I guess but I feel like such a complainer.
She promised me that once we have his sugars under control a little better and they back off of the night checks I will start to feel better because I will have more than 2.5 hours of sleep at a time. I hope that's all it is. Sleep deprivation. It makes sense. I check his blood every three hours, even through the night. So let's say I check him at midnight. Next check is 3 am. I don't fall asleep right at midnight. I have to write down his numbers, do some math if it's high and then give him insulin if he needs it. By then it's 12:30. By the time I lay down and actually fall asleep it's more like 1 am and I'm back up again at 3 for his next check. So then I'm up at 6 and I have a choice. Stay up since Baylee has to be up at 7 am OR I can lay down for another 15 or so minutes and hope I actually fall asleep. This is where I get into trouble because I will fall asleep because I'm just exhausted and then I oversleep to get her on the bus.
Last week I was fortunate enough that he stayed asleep and I was able to get Baylee on the bus without incident. I then went back to bed with Carson and slept until 9:15. We would've slept longer but I woke up to my phone ringing because Amber had decided to stop by and see us since it was a teacher work day and the pipes busted at the school because of the temps and she didn't want to drive all the way home. So I'm running around like crazy trying to clean as much of the house as I could in the 4 minutes it took her to get to us. It was almost comical.
She mentioned to us that I should start trying to get social security disability since this is just another thing limiting what he will be able to do when he is older. I guess I'm really going to have to buckle down and make the call. I have been putting it off because I didn't want to have another problem to deal with at the present moment.
After the social worker we met with a nurse who took Carson's vitals and then our endocrine doc came to see us. His A1C (measures how long his blood sugar has been high in his system) is now down to 9.2. It was 9.4 at the hospital. They want it around 8.5 when it's all said and done. An adult should be around 7. She told me that it's good that it's going down slowly because that means he isn't having too many low sugar levels to bring it down faster.
She told me that he is starting to plateau with his numbers which means he is settling into his 'honeymoon period'. When this period is over (in 6 months to a year) his pancreas will have shut down completely and his numbers will start to rise again. When that happens they will have to adjust his insulin levels again. It's so weird when you think about this ugly little organ that's all lumpy in your body and how 'smart' it actually is. We are having such a hard time mimicking that stupid ugly organ just to keep my little guy alive.
Carson did great today. He let his doc listen to his chest without screaming and even let her look at his injection sites and fingers to see if they were infected (nope) or being over-used (not a chance-yet). She said to come back in a month and after that it will be every 3 months.
So for now we are crossing our fingers for 2 more nights of consistent numbers. If that is the case she said I can back off to just checking sugar levels at midnight and 6 am!! I hope, I hope, I hope.
XX
She promised me that once we have his sugars under control a little better and they back off of the night checks I will start to feel better because I will have more than 2.5 hours of sleep at a time. I hope that's all it is. Sleep deprivation. It makes sense. I check his blood every three hours, even through the night. So let's say I check him at midnight. Next check is 3 am. I don't fall asleep right at midnight. I have to write down his numbers, do some math if it's high and then give him insulin if he needs it. By then it's 12:30. By the time I lay down and actually fall asleep it's more like 1 am and I'm back up again at 3 for his next check. So then I'm up at 6 and I have a choice. Stay up since Baylee has to be up at 7 am OR I can lay down for another 15 or so minutes and hope I actually fall asleep. This is where I get into trouble because I will fall asleep because I'm just exhausted and then I oversleep to get her on the bus.
Last week I was fortunate enough that he stayed asleep and I was able to get Baylee on the bus without incident. I then went back to bed with Carson and slept until 9:15. We would've slept longer but I woke up to my phone ringing because Amber had decided to stop by and see us since it was a teacher work day and the pipes busted at the school because of the temps and she didn't want to drive all the way home. So I'm running around like crazy trying to clean as much of the house as I could in the 4 minutes it took her to get to us. It was almost comical.
She mentioned to us that I should start trying to get social security disability since this is just another thing limiting what he will be able to do when he is older. I guess I'm really going to have to buckle down and make the call. I have been putting it off because I didn't want to have another problem to deal with at the present moment.
After the social worker we met with a nurse who took Carson's vitals and then our endocrine doc came to see us. His A1C (measures how long his blood sugar has been high in his system) is now down to 9.2. It was 9.4 at the hospital. They want it around 8.5 when it's all said and done. An adult should be around 7. She told me that it's good that it's going down slowly because that means he isn't having too many low sugar levels to bring it down faster.
She told me that he is starting to plateau with his numbers which means he is settling into his 'honeymoon period'. When this period is over (in 6 months to a year) his pancreas will have shut down completely and his numbers will start to rise again. When that happens they will have to adjust his insulin levels again. It's so weird when you think about this ugly little organ that's all lumpy in your body and how 'smart' it actually is. We are having such a hard time mimicking that stupid ugly organ just to keep my little guy alive.
Carson did great today. He let his doc listen to his chest without screaming and even let her look at his injection sites and fingers to see if they were infected (nope) or being over-used (not a chance-yet). She said to come back in a month and after that it will be every 3 months.
So for now we are crossing our fingers for 2 more nights of consistent numbers. If that is the case she said I can back off to just checking sugar levels at midnight and 6 am!! I hope, I hope, I hope.
XX
Tuesday, January 21, 2014
Stress (again)
Okay. I have a confession. I am beyond stressed right now. I am having such a hard time finding a balance between everything going on in my life. Between the regular house stuff, dishes laundry etc and managing all of Carson's needs plus everything that Baylee has going on I can't seem to keep up. I feel like I am running in circles trying to half-ass everything just so I can say it's been 'done'. Example: I wash the clothes, I put them in the dryer and start a new load. When the dryer is done I put all of the clothes that were in it into a chair in my living room and switch the wet clothes to the dryer. Always thinking I will fold them later I move on to another chore in the house (make food, dishes etc). I NEVER get back to the clothes in the chair. Okay, maybe not NEVER but not the rest of that day for sure. My house is dusty, there is something on every flat surface (mail, etc) and I can't tell you the last time I made a bed.
Carson is a full-time job. I seriously can't look away from him because when I look back he is trying to chew on an electrical cord or eat paper or climb onto the kitchen table. Between that and now I have to check his sugar every three hours and correct when it's high (or low). If it's high I go ahead and feed him again just so I feel better about having to stab him in the leg or arm again. Compound that with a really harsh winter that has left me home bound for almost the past week (and school out for Baylee). She is at that age now where I'm an idiot, she knows it all and we have been butting heads constantly. I think I've mentioned before that she's a mini-me. I seriously don't know how I survived my childhood without my mom knocking my lights out. I love her so much but I have to admit it is so much easier when she is at school.
Part of that problem is the fact that I really have no one to talk to about what is stressing me out. Mike is worried enough about finances and work and putting food on the table. We never really talked about Carson's chromosomal diagnosis (can you say elephant?) and now with the diabetes it is even worse. I relay to him the messages from the docs about changing insulin doses etc but Mike hasn't given Carson one injection since probably the day we came home from the hospital. I am up every three hours during the night checking blood sugar. I have done that since the beginning. Mike hasn't done it once. Even on the weekends. His excuse is that he can't see very well without his contacts BUT he has glasses so there goes that theory.
My best friend is great but she is so busy herself with her three kids that I don't really feel like I can mention anything to her because, well, she doesn't get it. She was blessed with three perfectly healthy kids and I don't want to be Debby Downer when I do get the chance to talk to her.
The one person that I could talk to was my boss' wife. Now that I am no longer working I'm finding it longer and longer between conversations. I don't blame her. She's in her 60's and busy enjoying the life she now has and the freedom that comes with it. I think they will be moving soon to Florida so it's not like I'm ever really going to be able to see her again anyway.
The one person I wish I could talk to is my mom but frankly it's just not possible. I don't know if it's she doesn't care or if she just doesn't want to believe what it going on. She actually had the nerve the other day to tell me that to her it feels like I have taken custody of MY kids from her! She is referring to the fact that she used to babysit the kids for me when I worked. Granted, she did have them a lot BUT I never worked full-time. For a while it was 3 days a week, then it went to a 3/4 split and then I worked 4 days a week but only 3 weeks a month and then I would get a week off. I was so flabbergasted I didn't know what to say. Considering the fact that she never listened to what I wanted for my kids (diet, sunscreen etc) and now she has such a hard time saying no to them it's hard for me to even be over there especially when it comes to Carson because when I quit working it too me weeks to get him off of drinking Coke. He would bring me can after can out of my fridge asking for it. I finally got smart and started leaving it in the garage where he couldn't reach it. I would give him a little in a cup at the beginning because I figured he was having caffeine withdrawals and it would be easier to wean him off little by little. Now that he is diabetic I can't have him at her house trying to drink from her cup and her turning the other way.
Tomorrow Carson has two appointments at Children's. One is to see his nurse practitioner and the other is with a social worker. I really don't want to spill my guts to a state mandated worker but it may come to that. Maybe they can give me some coping strategies that will work. I still wish this was all a dream but I know it's not. Each day is so different with him. Some days he's great with sugar checks and other days I have to hold him down. Tonight he tried to rip the needle out of my hand after I had already stuck him in the leg.
I'm sure if I could sleep through the night for a few nights in a row I would probably feel a lot better but they just changed his Lantus dose again and gave me strict instructions to check it every 3 hours. I had been slipping and letting it go to 4 or 4.5. I would set my alarm for the 3 hours and then either sleep through it or hit snooze for over an hour before I'd wake up and realize what I was doing. I have even been putting it across the room and I'm still figuring out how to sleep walk to the alarm just to hit snooze for another 9 minutes, which then turns to 60-75!
So I'm off for another sugar check. Crossing my fingers it's within range. Then I can go to bed for my 3 hours and then back at it again later....
XX
Carson is a full-time job. I seriously can't look away from him because when I look back he is trying to chew on an electrical cord or eat paper or climb onto the kitchen table. Between that and now I have to check his sugar every three hours and correct when it's high (or low). If it's high I go ahead and feed him again just so I feel better about having to stab him in the leg or arm again. Compound that with a really harsh winter that has left me home bound for almost the past week (and school out for Baylee). She is at that age now where I'm an idiot, she knows it all and we have been butting heads constantly. I think I've mentioned before that she's a mini-me. I seriously don't know how I survived my childhood without my mom knocking my lights out. I love her so much but I have to admit it is so much easier when she is at school.
Part of that problem is the fact that I really have no one to talk to about what is stressing me out. Mike is worried enough about finances and work and putting food on the table. We never really talked about Carson's chromosomal diagnosis (can you say elephant?) and now with the diabetes it is even worse. I relay to him the messages from the docs about changing insulin doses etc but Mike hasn't given Carson one injection since probably the day we came home from the hospital. I am up every three hours during the night checking blood sugar. I have done that since the beginning. Mike hasn't done it once. Even on the weekends. His excuse is that he can't see very well without his contacts BUT he has glasses so there goes that theory.
My best friend is great but she is so busy herself with her three kids that I don't really feel like I can mention anything to her because, well, she doesn't get it. She was blessed with three perfectly healthy kids and I don't want to be Debby Downer when I do get the chance to talk to her.
The one person that I could talk to was my boss' wife. Now that I am no longer working I'm finding it longer and longer between conversations. I don't blame her. She's in her 60's and busy enjoying the life she now has and the freedom that comes with it. I think they will be moving soon to Florida so it's not like I'm ever really going to be able to see her again anyway.
The one person I wish I could talk to is my mom but frankly it's just not possible. I don't know if it's she doesn't care or if she just doesn't want to believe what it going on. She actually had the nerve the other day to tell me that to her it feels like I have taken custody of MY kids from her! She is referring to the fact that she used to babysit the kids for me when I worked. Granted, she did have them a lot BUT I never worked full-time. For a while it was 3 days a week, then it went to a 3/4 split and then I worked 4 days a week but only 3 weeks a month and then I would get a week off. I was so flabbergasted I didn't know what to say. Considering the fact that she never listened to what I wanted for my kids (diet, sunscreen etc) and now she has such a hard time saying no to them it's hard for me to even be over there especially when it comes to Carson because when I quit working it too me weeks to get him off of drinking Coke. He would bring me can after can out of my fridge asking for it. I finally got smart and started leaving it in the garage where he couldn't reach it. I would give him a little in a cup at the beginning because I figured he was having caffeine withdrawals and it would be easier to wean him off little by little. Now that he is diabetic I can't have him at her house trying to drink from her cup and her turning the other way.
Tomorrow Carson has two appointments at Children's. One is to see his nurse practitioner and the other is with a social worker. I really don't want to spill my guts to a state mandated worker but it may come to that. Maybe they can give me some coping strategies that will work. I still wish this was all a dream but I know it's not. Each day is so different with him. Some days he's great with sugar checks and other days I have to hold him down. Tonight he tried to rip the needle out of my hand after I had already stuck him in the leg.
I'm sure if I could sleep through the night for a few nights in a row I would probably feel a lot better but they just changed his Lantus dose again and gave me strict instructions to check it every 3 hours. I had been slipping and letting it go to 4 or 4.5. I would set my alarm for the 3 hours and then either sleep through it or hit snooze for over an hour before I'd wake up and realize what I was doing. I have even been putting it across the room and I'm still figuring out how to sleep walk to the alarm just to hit snooze for another 9 minutes, which then turns to 60-75!
So I'm off for another sugar check. Crossing my fingers it's within range. Then I can go to bed for my 3 hours and then back at it again later....
XX
Cat problems
This past week has been so stressful for me. Last Monday Carson had school and then Tuesday all hell broke loose. My cat Tink who we've had for 13 years threw up on the floor Tuesday about 6pm. We put her out back and then I left to take Baylee to dance class. When we got back I asked Mike if he had let her back in and he said no. Apparently she hadn't come back to the door so he forgot that she was even out. That right there is weird because she HATES to be outside. I went out to look for her and found her up underneath my outdoor table practically screaming. I thought that she was just upset/scared from being out in the dark but when I brought her inside she was acting really weird. First she went and hid behind a chair and then when I got her out her whole body went stiff and she fell over onto her side. After that she went into very violent seizures. All four limbs were flying all over the place and she was howling. It was so scary. After about an hour she had calmed down and went to sleep. My sister has a dog with epilepsy so I knew to just make sure she was safe with her surrounding and just giver her space. You can actually do more damage trying to contain her during a seizure.
It was so upsetting to see. I thought maybe she was just so scared from being outside that it made her seize. I got Carson to bed and when I came out she was seizing again. This time I thought she was dying. Her body was so stiff, no flailing and her breathing was very shallow and very spaced out. She would take a gasping breath and then not breathe again for about 30 seconds. I have had many animals in my life and I have never seen anything like this before. But also having this many animals I know that 13 is about when cats can start to go downhill and die. I thought that her organs were just shutting down and it was her time to go.
I stayed up with her until 3 am, holding her, petting her, (bawling), and telling her good-bye. I wrote Mike a note telling him where she was and that she would probably be dead by the time he got up for work in a couple of hours and just to leave her and not let the dogs mess with her.
When I got up the next morning (at 6 am) I saw that Mike had texted me and told me that not only was Tink alive, she was doing great! He had covered her with a towel to keep her warm. I couldn't believe it. I ran out to where she was and sure enough she was alive and alert. So much different from the way she was when I had gone to bed 3 hours before.
I got Baylee up and ready for school. By the time we got back out to the living room again she was seizing again. She had pooped and peed all over herself. It was awful. Baylee was so upset to see what Tink was going through. I promised her that I was taking her to the vet as soon as they opened. I called our vet and of course they were closed for the day so I found the next closest one and called to see if they would see her. I hurried to wake Carson and get him fed and his insulin in him. I put Tink in a box and drove to the vet.
As soon as I pulled into the parking lot one of the techs came to the car and grabbed the box out of the front seat. She took one look at Tink and rushed her to the back. When she came back out to ask what happened I was crying so hard I couldn't even talk. She handed me a questionnaire and told me to fill it out. It was more of a timeline than anything. I filled out what I could and waited. I was holding Carson in my arms and he kept motioning to the door they had rushed Tink through. I just kept telling him that the kitty was sick and she was at the doctor. He so sweetly took my head in his hands and kissed me on the forehead. He then wrapped his arms around my neck and hugged me until they came back out. It's amazing to me how supportive he could be for me in that situation.
After about ten minutes they came out and told me that they had medicated her to stop the seizures. They wanted to do blood work and keep her to figure out what was going on. I signed the forms and left with Carson.
To keep a long story short Tink was at the vet for 2 days. They told me that she either had a brain tumor or a cat encephalitis. The vet kept telling me that she wouldn't be normal again. She had brain damage and was blind and could barely walk. They told me that her blood sugar was very low and her white cell count was high. Infection or an insulin producing tumor that would make it difficult to keep her sugar up. Once she was 'stable' she told me that I could take her home and make her as comfortable as possible or I could put her down.
I went to the vet knowing in my head that I was probably going to be bringing home a corpse. When I got there they brought Tink out and placed her in my arms. She immediately started snuggling my neck and purred. After telling me that she had brain damage I was expecting her to not have a clue who I was. I decided there that I wasn't going to give up on her that easily. I decided to take her home. They put her on a course of Prednisone in case it was encephalitis and it would help with the swelling in her brain.
It's now been 5 days since she's been home. She is now walking without any problems and while she is 'blind' she still seems to be able to see shapes/movement or something. I can't believe we almost put her down. The stress of everything that has gone on with Carson has now been compounded by having to take extra care of my now blind cat. For the first few days we had to take her to the litter box, water dish, food dish etc. Now she is getting along much better. I guess it's possible she will go downhill again but I am optimistic at this point. I now have a special-needs cat to go along with my special-needs child.
I don't know how much more stress I can handle at this point though. I have an eye that has been twitching for a couple of days (lol) and I'm pretty sure I've spent all of my miracles for the next 100 years or so. I know there are some people who would say it's just a cat but she's not to me. She's one of my fur babies and I love her just as much.
XX
It was so upsetting to see. I thought maybe she was just so scared from being outside that it made her seize. I got Carson to bed and when I came out she was seizing again. This time I thought she was dying. Her body was so stiff, no flailing and her breathing was very shallow and very spaced out. She would take a gasping breath and then not breathe again for about 30 seconds. I have had many animals in my life and I have never seen anything like this before. But also having this many animals I know that 13 is about when cats can start to go downhill and die. I thought that her organs were just shutting down and it was her time to go.
I stayed up with her until 3 am, holding her, petting her, (bawling), and telling her good-bye. I wrote Mike a note telling him where she was and that she would probably be dead by the time he got up for work in a couple of hours and just to leave her and not let the dogs mess with her.
When I got up the next morning (at 6 am) I saw that Mike had texted me and told me that not only was Tink alive, she was doing great! He had covered her with a towel to keep her warm. I couldn't believe it. I ran out to where she was and sure enough she was alive and alert. So much different from the way she was when I had gone to bed 3 hours before.
I got Baylee up and ready for school. By the time we got back out to the living room again she was seizing again. She had pooped and peed all over herself. It was awful. Baylee was so upset to see what Tink was going through. I promised her that I was taking her to the vet as soon as they opened. I called our vet and of course they were closed for the day so I found the next closest one and called to see if they would see her. I hurried to wake Carson and get him fed and his insulin in him. I put Tink in a box and drove to the vet.
As soon as I pulled into the parking lot one of the techs came to the car and grabbed the box out of the front seat. She took one look at Tink and rushed her to the back. When she came back out to ask what happened I was crying so hard I couldn't even talk. She handed me a questionnaire and told me to fill it out. It was more of a timeline than anything. I filled out what I could and waited. I was holding Carson in my arms and he kept motioning to the door they had rushed Tink through. I just kept telling him that the kitty was sick and she was at the doctor. He so sweetly took my head in his hands and kissed me on the forehead. He then wrapped his arms around my neck and hugged me until they came back out. It's amazing to me how supportive he could be for me in that situation.
After about ten minutes they came out and told me that they had medicated her to stop the seizures. They wanted to do blood work and keep her to figure out what was going on. I signed the forms and left with Carson.
To keep a long story short Tink was at the vet for 2 days. They told me that she either had a brain tumor or a cat encephalitis. The vet kept telling me that she wouldn't be normal again. She had brain damage and was blind and could barely walk. They told me that her blood sugar was very low and her white cell count was high. Infection or an insulin producing tumor that would make it difficult to keep her sugar up. Once she was 'stable' she told me that I could take her home and make her as comfortable as possible or I could put her down.
I went to the vet knowing in my head that I was probably going to be bringing home a corpse. When I got there they brought Tink out and placed her in my arms. She immediately started snuggling my neck and purred. After telling me that she had brain damage I was expecting her to not have a clue who I was. I decided there that I wasn't going to give up on her that easily. I decided to take her home. They put her on a course of Prednisone in case it was encephalitis and it would help with the swelling in her brain.
It's now been 5 days since she's been home. She is now walking without any problems and while she is 'blind' she still seems to be able to see shapes/movement or something. I can't believe we almost put her down. The stress of everything that has gone on with Carson has now been compounded by having to take extra care of my now blind cat. For the first few days we had to take her to the litter box, water dish, food dish etc. Now she is getting along much better. I guess it's possible she will go downhill again but I am optimistic at this point. I now have a special-needs cat to go along with my special-needs child.
I don't know how much more stress I can handle at this point though. I have an eye that has been twitching for a couple of days (lol) and I'm pretty sure I've spent all of my miracles for the next 100 years or so. I know there are some people who would say it's just a cat but she's not to me. She's one of my fur babies and I love her just as much.
XX
School: Day 15
It's still hard to believe we're in January already. Today Carson went to school for the first time in a month. I honestly almost forgot what time we were supposed to be there. I made sure that he was fed and medicated about an hour before we were supposed to be there that way I could check his sugar at the end of the class and see if he needed to eat before we got Baylee off the bus.
When I pulled into the parking lot Patty was getting something out of her car. She met me at my parking space and immediately hugged me. I guess all of the teachers had been texting back and forth during our hospital stay keeping everyone up to date with what was going on with Carson.
She told me that she had a student that would be working with her and wondered how Carson would do with her. I told her after what he had gone through in the hospital I thought as long as she didn't come at him with a needle he'd probably be okay. We signed in and got to work. Patty had Carson start out on the stairs. She had beanie babies at the top and the student (I can't remember her name!) stood at the bottom with a bag to put them in. He did great. A few times he got a little over-zealous and would take two at a time but other than that he did so good. He was reciprocal on the way up and started out with two feet on each step on the way down but once he warmed up a bit he didn't seem to have any trouble going down. Patty stayed next to him in case he lost his balance. I bet he did this 10 or so times before you could see that he needed a break. He was constantly looking for me to make sure that I hadn't left him but once I would reassure him he would go right back to climbing.
His black eye was a good conversation starter with everyone. They all joked with me that I had sucker punched him in the eye but they all knew that I really had nothing to do with it. It made me feel better seeing the sense of humor about the whole situation considering how bad I still felt about the fact that I wasn't fast enough to catch him in the first place.
After the stairs we went to Amber's classroom and she was so happy to see him up and happy. The last time she had seen him was in the hospital when she and Amy came to visit. Carson was still pretty out of it at that point and he didn't look good at all. At least now (if you could look past the eye) he looked like himself again. When Jen came in she scooped him up into her arms and just hugged him. I think he was as happy to see her as she was to see him.
The school part went better than I could've ever expected. Carson sat on his little red bean ball and paid attention the whole time. He would look over every so often to see if I was still in my chair but he was really into it. I've noticed over the past few days that he is really interested in the ASL alphabet. When they sang the days of the week song (to the Adam's Family theme song) they also signed the days. He picked up on the fact that each day was just the corresponding letter of the alphabet in sign language. His little eyes lit up and he was making little noises as he looked at me and was flicking a little finger towards Amber in the front of the class. He didn't even really seem to mind that the student was right behind him holding the ball. He was able to tell them that it was rainy today when she asked about the weather (he pulled the rainy picture off of a picture board) and even showed Amber that the weather panda needed a rain coat and shoes. MY Carson was back.
LaQuita read a story about winter clothes and he was engaged in the story the whole time. He kind-of meandered around the mat where all the teachers were but he paid attention. He even went up to the book and pointed along with the words that she was reading. It was interesting watching Amber look at Carson and study him as he was bouncing on his ball and squealing and overall having a great time. I don't know if it was relief or if she was just paying attention to him to gauge how he was feeling but it was a good feeling for me to see that she really cares. Carson kept reaching over to the other little boy in the class to try to kiss him on the forehead. The little guy was pretty creeped out by it and would move a little out of Carson's reach. It was funny and sad at the same time.
After the book the boys split up and Carson went with Patty and the new girl and the other little boy went to speech. I honestly didn't pay too close of attention to what they were doing because I was talking to Jen about the ordeal and how we ended up at the hospital. When I showed her the picture of Carson at his worst I thought she was going to cry. I know that it is a shocking photo to begin with but again it's one of those things when you actually see how much these girls care about him.
After jumping off the stool a few times he came to Jen and they worked on cutting with scissors and connecting dots to make squares. He would do it but he really had his own agenda. She was telling him to connect the dots (1,2,3,4) and showing him which dots to connect. He then drew:
1 2
3 4
It was hilarious. It was what she had told him. He even wrote the numbers exactly where she had pointed to on the paper just instead of connecting the dots he made his own with the numbers.
He went back to Patty and I showed Jen what he had been working on while we were out of school for so long. His newest iPad app: itrace. It's hard. Honestly, even I have trouble doing it. Luckily it had a glossary of all the previous work he had done and even broke it down by skill level and date. She was stunned. It's words like barnyard and yacht etc. (Yacht is his new handle that he goes by now on all of his apps that require a profile to play them). She then posed a question. Do we really CARE that he doesn't hold a pen the correct way to write considering the technological age we are in and he can type and write with his fingertips? The short answer? NO. Even Amber agreed. Her next question was: Is there ever going to come a time in his lifetime where using scissors is going to make or break him? Our combined answer? NO. Those were his IEP goals for OT. Jen told us that if those aren't his goals anymore we needed to change them so that she could continue to work with him. I pondered for a second and we both came up with his new OT goal at the same time. Getting dressed. He can't button or zip / unzip anything. She said that she would amend the IEP and I could sign off on it next week and that is what we will start working on. Something that WILL help him in the long run. It's a shame that it came to us with only 4 months left but hey, it's better than nothing. (During this conversation Carson was bowling).
LaQuita was almost done with the other little boy in the class so to kill a few extra minutes Jen pulled Carson over to the huge easel with paper as big as me. She handed him a marker and let him go to town. He wrote all over the paper. She told him she was glad that he was feeling better and he wrote 'glad' on the paper. I asked him what his name was this week and he wrote 'yacht'. He's such a crack-up. He then went back to the table and wanted to play with this letter play-doh. It has a very rubbery feeling to it that usually makes him gag but for some reason he was really into playing with it.
When it was LaQuita's turn with Carson Jen stayed to help. They had him match pictures that had been cut out to their counterparts on the page in front of him. 'What cuts your grass?" lawnmower. "Who gives you milk?" cow. He did great. He honestly did better that what I thought he would. They worked on the iPad for a bit and then it was time to go.
This past Monday was a holiday so we didn't have school and this coming Monday the teachers have a class to attend so we may not go then either. Amber did invite us to group physical therapy on Wednesday at 9 so we may go to that next week. Carson has two doctor's appointments tomorrow morning so we won't be able to go then.
XX
When I pulled into the parking lot Patty was getting something out of her car. She met me at my parking space and immediately hugged me. I guess all of the teachers had been texting back and forth during our hospital stay keeping everyone up to date with what was going on with Carson.
She told me that she had a student that would be working with her and wondered how Carson would do with her. I told her after what he had gone through in the hospital I thought as long as she didn't come at him with a needle he'd probably be okay. We signed in and got to work. Patty had Carson start out on the stairs. She had beanie babies at the top and the student (I can't remember her name!) stood at the bottom with a bag to put them in. He did great. A few times he got a little over-zealous and would take two at a time but other than that he did so good. He was reciprocal on the way up and started out with two feet on each step on the way down but once he warmed up a bit he didn't seem to have any trouble going down. Patty stayed next to him in case he lost his balance. I bet he did this 10 or so times before you could see that he needed a break. He was constantly looking for me to make sure that I hadn't left him but once I would reassure him he would go right back to climbing.
His black eye was a good conversation starter with everyone. They all joked with me that I had sucker punched him in the eye but they all knew that I really had nothing to do with it. It made me feel better seeing the sense of humor about the whole situation considering how bad I still felt about the fact that I wasn't fast enough to catch him in the first place.
After the stairs we went to Amber's classroom and she was so happy to see him up and happy. The last time she had seen him was in the hospital when she and Amy came to visit. Carson was still pretty out of it at that point and he didn't look good at all. At least now (if you could look past the eye) he looked like himself again. When Jen came in she scooped him up into her arms and just hugged him. I think he was as happy to see her as she was to see him.
The school part went better than I could've ever expected. Carson sat on his little red bean ball and paid attention the whole time. He would look over every so often to see if I was still in my chair but he was really into it. I've noticed over the past few days that he is really interested in the ASL alphabet. When they sang the days of the week song (to the Adam's Family theme song) they also signed the days. He picked up on the fact that each day was just the corresponding letter of the alphabet in sign language. His little eyes lit up and he was making little noises as he looked at me and was flicking a little finger towards Amber in the front of the class. He didn't even really seem to mind that the student was right behind him holding the ball. He was able to tell them that it was rainy today when she asked about the weather (he pulled the rainy picture off of a picture board) and even showed Amber that the weather panda needed a rain coat and shoes. MY Carson was back.
LaQuita read a story about winter clothes and he was engaged in the story the whole time. He kind-of meandered around the mat where all the teachers were but he paid attention. He even went up to the book and pointed along with the words that she was reading. It was interesting watching Amber look at Carson and study him as he was bouncing on his ball and squealing and overall having a great time. I don't know if it was relief or if she was just paying attention to him to gauge how he was feeling but it was a good feeling for me to see that she really cares. Carson kept reaching over to the other little boy in the class to try to kiss him on the forehead. The little guy was pretty creeped out by it and would move a little out of Carson's reach. It was funny and sad at the same time.
After the book the boys split up and Carson went with Patty and the new girl and the other little boy went to speech. I honestly didn't pay too close of attention to what they were doing because I was talking to Jen about the ordeal and how we ended up at the hospital. When I showed her the picture of Carson at his worst I thought she was going to cry. I know that it is a shocking photo to begin with but again it's one of those things when you actually see how much these girls care about him.
After jumping off the stool a few times he came to Jen and they worked on cutting with scissors and connecting dots to make squares. He would do it but he really had his own agenda. She was telling him to connect the dots (1,2,3,4) and showing him which dots to connect. He then drew:
1 2
3 4
It was hilarious. It was what she had told him. He even wrote the numbers exactly where she had pointed to on the paper just instead of connecting the dots he made his own with the numbers.
He went back to Patty and I showed Jen what he had been working on while we were out of school for so long. His newest iPad app: itrace. It's hard. Honestly, even I have trouble doing it. Luckily it had a glossary of all the previous work he had done and even broke it down by skill level and date. She was stunned. It's words like barnyard and yacht etc. (Yacht is his new handle that he goes by now on all of his apps that require a profile to play them). She then posed a question. Do we really CARE that he doesn't hold a pen the correct way to write considering the technological age we are in and he can type and write with his fingertips? The short answer? NO. Even Amber agreed. Her next question was: Is there ever going to come a time in his lifetime where using scissors is going to make or break him? Our combined answer? NO. Those were his IEP goals for OT. Jen told us that if those aren't his goals anymore we needed to change them so that she could continue to work with him. I pondered for a second and we both came up with his new OT goal at the same time. Getting dressed. He can't button or zip / unzip anything. She said that she would amend the IEP and I could sign off on it next week and that is what we will start working on. Something that WILL help him in the long run. It's a shame that it came to us with only 4 months left but hey, it's better than nothing. (During this conversation Carson was bowling).
LaQuita was almost done with the other little boy in the class so to kill a few extra minutes Jen pulled Carson over to the huge easel with paper as big as me. She handed him a marker and let him go to town. He wrote all over the paper. She told him she was glad that he was feeling better and he wrote 'glad' on the paper. I asked him what his name was this week and he wrote 'yacht'. He's such a crack-up. He then went back to the table and wanted to play with this letter play-doh. It has a very rubbery feeling to it that usually makes him gag but for some reason he was really into playing with it.
When it was LaQuita's turn with Carson Jen stayed to help. They had him match pictures that had been cut out to their counterparts on the page in front of him. 'What cuts your grass?" lawnmower. "Who gives you milk?" cow. He did great. He honestly did better that what I thought he would. They worked on the iPad for a bit and then it was time to go.
This past Monday was a holiday so we didn't have school and this coming Monday the teachers have a class to attend so we may not go then either. Amber did invite us to group physical therapy on Wednesday at 9 so we may go to that next week. Carson has two doctor's appointments tomorrow morning so we won't be able to go then.
XX
Monday, January 13, 2014
History
It's Monday. I'm feeling a little better today and the pity party is over for now. I'm sure it won't be the last time that I get overwhelmed with the way things are going but I just have to wade through it. I think the hard thing for me has been that our family has been through so much already with many things that I just don't understand why we can't seem to catch a break.
Mike and I met in January 2000. We were engaged in June of the same year and married in June of 2001. January 2002 our lives changed forever. Mike was involved in an industrial accident that could've killed him. He was on a scissor lift 20 feet in the air when it broke and fell over. Mike's partner jumped before it hit the ground and ended up with a broken arm, concussion and cut on his head. Mike rode it down to the ground and wasn't so lucky. He was in the hospital for a week with a broken pelvis, hip, foot and hand. His pubis bone was crushed and worst of all he has a compression fracture of the L2 vertebra in his back. I was 20 and he was 24. Our lives were never the same after that accident. Mike changed. I changed.
For 6 months Mike slept on the couch in our living room because he was unable to climb the stairs to our bedroom. Our dining room became his bathroom as he was confined to one floor of our house and it only contained the kitchen living room and dining room. I had to bathe him in the kitchen with a kiddie pool and a chair. I cleaned out his potty chair and go him dressed etc. It was really the first time in my life that I had to be self-less and put someone else's needs in front of mine. Being so young and being the youngest child in my house growing up this was hard for me. I had never taken care of anyone else before. No diapers to change or babies to feed etc. I was so used to being the one who was taken care of. I am honest when I say that it was rough and I didn't handle it very well. Mike was depressed and angry. He was moody all the time and it was such a change from who he had been when we fell in love. He was in a torso cast that came off when he went to bed and he used a walker to get around. After 3 months he was able to switch to crutches which he used for another month or so until his hip was healed enough to hold his weight.
After 6 months I made him go back to work. He was always home alone in the dark. He never opened the blinds turned on the tv or went out onto the porch. He just sat there. I was afraid he was going to commit suicide so I pushed for him to take the exam to get back to work. I thought it would be good for him to get out of his slump and get back to 'normal'. He took the test and passed with strict restrictions. He wasn't allowed to lift more than 10 pounds or be on his feet for more than 30 minutes at a time. His work abided by the rules for a while but then they started making him lift heavier and heavier things and working for more than 30 minutes at a time on his feet. It has been really hard on his body.
When I was 6 months pregnant with Baylee Mike found out that he is a type 1 diabetic. He started getting really severe cramps in his legs and was thirsty all of the time. When he would sweat it smelled sweet. I remembered seeing an episode of The Twilight Zone of all things about a girl who didn't know she was diabetic but a "bad guy" did because she was so thirsty. Weird how those things stay etched in your mind. Anyway, Mike went and it was confirmed. We have always had a suspicion that it had something to do with his accident but there is no way to prove it. So there was this new onset diabetes to worry about and learn about right when we were about to have our first child and were already so worried that we wouldn't know how to take care of her.
Three and a half years later Carson came along. From day one it has always been something with him. More therapy sessions and doctor's appointments than I could possibly count.
In 2010 things got so bad with Mike's back it required surgery. He was going numb in the legs and had become incontinent because he could no longer feel the urge to go. They fused his L5-S1 together and stabilized it with a cage that has cadaver bone in it. Totally gross when you think about it but it helped. It was 6 more months at home. By this time we have two kids that even though Mike is home, he can't watch. So every day they had to get up early and be out the door at 6:30 to go to my mother's house. Sometimes they would be there until 6:30 at night.
By the end of 2010 we got Carson's first official diagnosis, the 15q24 microdeletion syndrome. That opened a lot of doors for Carson in the sense of therapy options and support through the county financially (for diapers and wipes). He began going to 'preschool' the day before he turned 3.
Mike changed jobs in 2011 and that has been one of the better things to happen to our family. He is doing somewhat of the same job but his truck has a crane to do the heavy lifting and he is off on weekends as long as there aren't any emergency calls.
Carson's second diagnosis of Duane Syndrome of course came in November of 2013 and then the diabetes on Christmas. I just wish that we could catch a break. I am so glad that I am not working anymore so that I am able to take care of Carson but it's taxing and exhausting.
Carson cannot dress himself, bathe or use a toilet. He can only hand feed himself and can't use utensils. He just now learned how to drink from a real cup but he doesn't have the concept that it has an open top and will spill if not placed right on a hard surface. His walk is unsteady and he staggers like he is drunk. He doesn't play or watch tv. His iPad and the vacuum are his only friends. Because he doesn't speak it is very hard to carry on a conversation even though I KNOW he understands much more than anyone will ever give him credit for. And now I have to check his sugar, limit his food, count every carb that passes through his lips and then stab him 30 minutes afterwards. It's so unfair.
His eyes have failed him. His ears have failed him. His fingers, his smooth muscles, his skeletal muscles, his brain, his nerves, and his senses have all failed him. We don't know if he can smell or taste either. And now his pancreas has failed him. We know that we will have to continue to monitor his heart and his kidneys. I just wish that he could have something go right for a change. He is such a sweet happy kid and it just seems so unfair. He will never lie or cheat or steal. He is pure and honest and everything that you could ever wish for in a child.
Baylee of course is feeling this from a whole different perspective. She already has had to do so much for Carson, to give up so much for him too. I don't know what it must feel like to be her and have so much attention given to someone else in the family. We try to make it fair. I swear we do. It's just HARD. I tried to get her to read the pamphlets they sent us home with from the hospital but it's almost like she doesn't even want to acknowledge anything is going on. Maybe one day she will just break down like I did and it will be what she needs. Maybe we just need a girl day. Just go and hang out and eat as much junk food as we can until we get sick since the boys obviously can't do that anymore.
Well, we're off to school. This is going to be interesting.
And as a little note: Type 1 diabetes is NOT genetic. Mike did not pass this on to Carson. It just happens to be that they both have it. TRUST ME. We asked. :)
XX
Mike and I met in January 2000. We were engaged in June of the same year and married in June of 2001. January 2002 our lives changed forever. Mike was involved in an industrial accident that could've killed him. He was on a scissor lift 20 feet in the air when it broke and fell over. Mike's partner jumped before it hit the ground and ended up with a broken arm, concussion and cut on his head. Mike rode it down to the ground and wasn't so lucky. He was in the hospital for a week with a broken pelvis, hip, foot and hand. His pubis bone was crushed and worst of all he has a compression fracture of the L2 vertebra in his back. I was 20 and he was 24. Our lives were never the same after that accident. Mike changed. I changed.
For 6 months Mike slept on the couch in our living room because he was unable to climb the stairs to our bedroom. Our dining room became his bathroom as he was confined to one floor of our house and it only contained the kitchen living room and dining room. I had to bathe him in the kitchen with a kiddie pool and a chair. I cleaned out his potty chair and go him dressed etc. It was really the first time in my life that I had to be self-less and put someone else's needs in front of mine. Being so young and being the youngest child in my house growing up this was hard for me. I had never taken care of anyone else before. No diapers to change or babies to feed etc. I was so used to being the one who was taken care of. I am honest when I say that it was rough and I didn't handle it very well. Mike was depressed and angry. He was moody all the time and it was such a change from who he had been when we fell in love. He was in a torso cast that came off when he went to bed and he used a walker to get around. After 3 months he was able to switch to crutches which he used for another month or so until his hip was healed enough to hold his weight.
After 6 months I made him go back to work. He was always home alone in the dark. He never opened the blinds turned on the tv or went out onto the porch. He just sat there. I was afraid he was going to commit suicide so I pushed for him to take the exam to get back to work. I thought it would be good for him to get out of his slump and get back to 'normal'. He took the test and passed with strict restrictions. He wasn't allowed to lift more than 10 pounds or be on his feet for more than 30 minutes at a time. His work abided by the rules for a while but then they started making him lift heavier and heavier things and working for more than 30 minutes at a time on his feet. It has been really hard on his body.
When I was 6 months pregnant with Baylee Mike found out that he is a type 1 diabetic. He started getting really severe cramps in his legs and was thirsty all of the time. When he would sweat it smelled sweet. I remembered seeing an episode of The Twilight Zone of all things about a girl who didn't know she was diabetic but a "bad guy" did because she was so thirsty. Weird how those things stay etched in your mind. Anyway, Mike went and it was confirmed. We have always had a suspicion that it had something to do with his accident but there is no way to prove it. So there was this new onset diabetes to worry about and learn about right when we were about to have our first child and were already so worried that we wouldn't know how to take care of her.
Three and a half years later Carson came along. From day one it has always been something with him. More therapy sessions and doctor's appointments than I could possibly count.
In 2010 things got so bad with Mike's back it required surgery. He was going numb in the legs and had become incontinent because he could no longer feel the urge to go. They fused his L5-S1 together and stabilized it with a cage that has cadaver bone in it. Totally gross when you think about it but it helped. It was 6 more months at home. By this time we have two kids that even though Mike is home, he can't watch. So every day they had to get up early and be out the door at 6:30 to go to my mother's house. Sometimes they would be there until 6:30 at night.
By the end of 2010 we got Carson's first official diagnosis, the 15q24 microdeletion syndrome. That opened a lot of doors for Carson in the sense of therapy options and support through the county financially (for diapers and wipes). He began going to 'preschool' the day before he turned 3.
Mike changed jobs in 2011 and that has been one of the better things to happen to our family. He is doing somewhat of the same job but his truck has a crane to do the heavy lifting and he is off on weekends as long as there aren't any emergency calls.
Carson's second diagnosis of Duane Syndrome of course came in November of 2013 and then the diabetes on Christmas. I just wish that we could catch a break. I am so glad that I am not working anymore so that I am able to take care of Carson but it's taxing and exhausting.
Carson cannot dress himself, bathe or use a toilet. He can only hand feed himself and can't use utensils. He just now learned how to drink from a real cup but he doesn't have the concept that it has an open top and will spill if not placed right on a hard surface. His walk is unsteady and he staggers like he is drunk. He doesn't play or watch tv. His iPad and the vacuum are his only friends. Because he doesn't speak it is very hard to carry on a conversation even though I KNOW he understands much more than anyone will ever give him credit for. And now I have to check his sugar, limit his food, count every carb that passes through his lips and then stab him 30 minutes afterwards. It's so unfair.
His eyes have failed him. His ears have failed him. His fingers, his smooth muscles, his skeletal muscles, his brain, his nerves, and his senses have all failed him. We don't know if he can smell or taste either. And now his pancreas has failed him. We know that we will have to continue to monitor his heart and his kidneys. I just wish that he could have something go right for a change. He is such a sweet happy kid and it just seems so unfair. He will never lie or cheat or steal. He is pure and honest and everything that you could ever wish for in a child.
Baylee of course is feeling this from a whole different perspective. She already has had to do so much for Carson, to give up so much for him too. I don't know what it must feel like to be her and have so much attention given to someone else in the family. We try to make it fair. I swear we do. It's just HARD. I tried to get her to read the pamphlets they sent us home with from the hospital but it's almost like she doesn't even want to acknowledge anything is going on. Maybe one day she will just break down like I did and it will be what she needs. Maybe we just need a girl day. Just go and hang out and eat as much junk food as we can until we get sick since the boys obviously can't do that anymore.
Well, we're off to school. This is going to be interesting.
And as a little note: Type 1 diabetes is NOT genetic. Mike did not pass this on to Carson. It just happens to be that they both have it. TRUST ME. We asked. :)
XX
Sunday, January 12, 2014
Stress
Tonight I am so frustrated that I can't sleep without getting this off my chest. We have been home from the hospital for almost two full weeks and I can count on 2 fingers the amount of times Mike has helped me with Carson's injections etc. I don't mean to sound whiny BUT I am so mentally and physically exhausted. I need a break!! At this point I don't even care I'd it's a trip to Kroger by myself. I just need SOMETHING.
In a given day I check Carson's sugar about 8 times. I also give him about 8 insulin injections a day. As well. That means I am stabbing that poor child AT LEAST 16 times a day. An keep in mind this is a 5-year-old kid who has other issues to deal with too. Any 5-year-old would protest and fight being stuck repeatedly with needles, hell I would too, but add SPD and a cognitive delay and it's a whole new story.
I don't know how much if this he understands. Probably more than I am giving him credit for to be honest. I tried to explain to him the other night that I wasn't mad at him and I wasn't doing this to punish him. I tried to explain that his pancreas wasn't working anymore and I had to do it's job now so that he wouldn't have to go back to the hospital. I'd like to think that at least some of what I said was processed. He knows now that he is allowed to have pickles and pork rinds whenever he wants but not yogurt and applesauce. That has to mean something, right?
I actually broke down yesterday because I am so stressed out. Baylee had an extender placed in her mouth by her orthodontist on Tuesday and we have to turn the key in the roof of her mouth every day. Yesterday when I was turning it the 'key' popped out of the hole and poked her in the roof of her mouth. I felt horrible for it happening. She of course screamed and cried and freaked out and I don't blame her. Then to top it off, Carson lost his balance and fell and smacked his face on the coffee table and got his first black eye. I iced it three separate times and it's still swollen and purple. I just feel like I can't win for losing at the moment.
Friday we went to see Carson's ENT (the doc who suggested this blog in the first place) and when he came into the room he was so understanding about everything. Even things that he doesn't deal with. He told me that his patients who are type 1 diabetics start to lose their hearing in their 30's as opposed to their 50's like most people. This sucks on it's own just because Carson already has a hearing loss in both ears. He was happy with the way his tubes are working and how much he is communicating with us between his signing, iPad and talking (his whole one word - EAT!! He then told me that if we do qualify for BCMH they offer home nursing visits which we can even use as respite if we need a break. He looked me straight in the eye and told me to ask for help when I need it because he knows Carson is a 24/7 job. I just wish the people in my family/circle could understand that too.
When I think about it, it's really weird how my family has been with us. Even from the beginning my mom hasn't been one to really see the whole picture. And even though my older sisters do, neither one of them has ever offered any kind of help. Even with Carson being in the hospital I don't really think I spoke to my mom more than one or two times and it was me calling to check on Baylee. My one sister came to see us but she was already in the building with her daughter for an appointment so it's not like she made a special trip. My oldest sister has been the one who I've talked to the most and that's mostly because since she and her husband are both medical professionals and work in hospitals I would run things by them before making decisions about things (like the A-line incident in the PICU.)
When I did mention to my mom that now not only am I mom, teacher, cook, maid, boo-boo kisser etc I am now nurse first and foremost. I wasn't looking for sympathy. I was just looking for a place to vent. All she said to me was, "You're mom. That's your job." Gee thanks. I just wanted a "Damn. That really sucks. I'm sorry you're having such a hard day." Just a little support. Hell at this point Mike is pretty much useless too. He too is a type 1 diabetic so when his sugar is low I have a 3rd child and when it's high he's a total asshole. I don't understand what I did to have all of this compounded onto my shoulders. I love my family. I love my kids. Sometimes I just don't understand it at all.
We go back to school Monday as long as the weather holds. It's been a month since he's gone. It's going to feel weird being back in those walls but I think it will be nice to have some normalcy. It's late. I'm going to bed for a couple of hours before my alarm goes off to check his sugar again.
XX
I actually broke down yesterday because I am so stressed out. Baylee had an extender placed in her mouth by her orthodontist on Tuesday and we have to turn the key in the roof of her mouth every day. Yesterday when I was turning it the 'key' popped out of the hole and poked her in the roof of her mouth. I felt horrible for it happening. She of course screamed and cried and freaked out and I don't blame her. Then to top it off, Carson lost his balance and fell and smacked his face on the coffee table and got his first black eye. I iced it three separate times and it's still swollen and purple. I just feel like I can't win for losing at the moment.
Friday we went to see Carson's ENT (the doc who suggested this blog in the first place) and when he came into the room he was so understanding about everything. Even things that he doesn't deal with. He told me that his patients who are type 1 diabetics start to lose their hearing in their 30's as opposed to their 50's like most people. This sucks on it's own just because Carson already has a hearing loss in both ears. He was happy with the way his tubes are working and how much he is communicating with us between his signing, iPad and talking (his whole one word - EAT!! He then told me that if we do qualify for BCMH they offer home nursing visits which we can even use as respite if we need a break. He looked me straight in the eye and told me to ask for help when I need it because he knows Carson is a 24/7 job. I just wish the people in my family/circle could understand that too.
When I think about it, it's really weird how my family has been with us. Even from the beginning my mom hasn't been one to really see the whole picture. And even though my older sisters do, neither one of them has ever offered any kind of help. Even with Carson being in the hospital I don't really think I spoke to my mom more than one or two times and it was me calling to check on Baylee. My one sister came to see us but she was already in the building with her daughter for an appointment so it's not like she made a special trip. My oldest sister has been the one who I've talked to the most and that's mostly because since she and her husband are both medical professionals and work in hospitals I would run things by them before making decisions about things (like the A-line incident in the PICU.)
When I did mention to my mom that now not only am I mom, teacher, cook, maid, boo-boo kisser etc I am now nurse first and foremost. I wasn't looking for sympathy. I was just looking for a place to vent. All she said to me was, "You're mom. That's your job." Gee thanks. I just wanted a "Damn. That really sucks. I'm sorry you're having such a hard day." Just a little support. Hell at this point Mike is pretty much useless too. He too is a type 1 diabetic so when his sugar is low I have a 3rd child and when it's high he's a total asshole. I don't understand what I did to have all of this compounded onto my shoulders. I love my family. I love my kids. Sometimes I just don't understand it at all.
We go back to school Monday as long as the weather holds. It's been a month since he's gone. It's going to feel weird being back in those walls but I think it will be nice to have some normalcy. It's late. I'm going to bed for a couple of hours before my alarm goes off to check his sugar again.
XX
Tuesday, January 7, 2014
Baby It's Cold Outside
It's cold. I mean really cold. With the wind chill it's about -30 to -40 tonight. Today I had to take Carson back to Children's Hospital for an education class for his diabetes. It was a very laid-back appointment which was nice. School was called off today because of the temperatures so Baylee was able to go to my mom's house for a bit since she didn't want to sit at the hospital for a few hours.
Half way to my mom's to drop her off I realized that I had forgotten Carson's bag that had ALL of his diabetic supplies! The only thing I had with me was the log book where I record all of his numbers. I felt so stupid, especially since we were going to a diabetic appointment. I called the office and luckily found out that they really only needed the log book. I was meeting Mike in a parking lot so that I could take him to the appointment too (his work truck won't fit in the parking garage) so we had his meter and insulin if we really needed to use it. If it had been any other appointment I would've had to turn around and get it from home. I felt like a really shitty mother at that point.
At the appointment they reviewed some stuff with us that we learned at the hospital and then they taught us how to handle things if he ends up with ketones in his urine. We don't even have to call anymore if he gets them unless we can't resolve them after a few failed attempts. It's more math which sucks but I'm happy that I don't have to pray over the test strip anymore because I don't want to have him put back in the hospital over it. That is stress we don't need at the moment.
They looked at his log book and made some adjustments with his insulin again. It's good but also bad because I still have to get up several times a night to check his blood sugar levels just to be sure. The last two nights he has been low and I've had to wake him up and give him apple juice to bring it back up. Both nights he has been pissed because he thinks it's time to get up and he runs straight to the kitchen to find his iPad. Then I have to convince him that it's still nighttime and he has to go back to bed.
After the appointment I dropped Mike off at his truck and drove home. Carson and I had lunch and hung out for a bit before heading down to get Baylee. My sister had jury duty today so her daughter was there too and it was good that the girls got to play together for a bit since they don't see much of each other anymore. Last year they were in the same school together and the same dance class. Baylee is older by 2 years so now that she is in 3rd grade she is in a different school.
When I got to my mom's I took Carson inside to say hi. Huge mistake. I love my mother but she has a hard time accepting things when they have to change and Carson's new diet is a HUGE change for her, and him too I guess. He immediately went to her mini fridge behind the bar and pulled out a can of Coke. She just looked at me with pleading eyes. I had to tell her three times that he couldn't have it. Then he pulled her into the kitchen and motioned her hand to the cabinet that has the cups inside. I was so mad when she actually got one down for him. I kept saying he can't have that!! She eventually put grape sugar-free Kool-Aid liquid in the cup and he was not impressed.
My sister was there to get her daughter and we both just stood and watched as Carson kept pulling item after item out of her pantry trying to get her to give him a snack. Sour cream and onion potato chips, Sun Chips etc. He reached for a banana and she almost gave it to him! "He can have a banana, right?" She asked pulling it off the bunch. "No Mom!" I screamed. "He CAN'T have that! It has TONS of sugar!!" The look on her face was almost sad. She seriously looked like she was going to cry.
At that point I gave up and told Baylee that we needed to pack up and go. My mom has never been very supportive about things with Carson. She just says I could be worse and then goes on to tell me about some story she saw on the news about a kid dying at the hospital. I know it could be worse. It would just be nice for some support. A simple 'I know this sucks right now but it'll get better' would suffice.
So for the most part it was a good day except for my mom being more ignorant about diabetes than I originally imagined. Maybe it's just the grandma in her having trouble saying no but I really don't think so. I think we are going to have to limit our visits over there for a while. The biggest problem now is we don't have a babysitter anymore. Not that Mike and I ever really go out a lot anyway but even for little things like school functions for Baylee I can't trust my mom not to dope him up on sugar (and she doesn't know how to and won't learn how to give insulin injections or check his sugar either). That makes things a tad bit more stressful knowing that we are stuck even more than we were before.
XX
Half way to my mom's to drop her off I realized that I had forgotten Carson's bag that had ALL of his diabetic supplies! The only thing I had with me was the log book where I record all of his numbers. I felt so stupid, especially since we were going to a diabetic appointment. I called the office and luckily found out that they really only needed the log book. I was meeting Mike in a parking lot so that I could take him to the appointment too (his work truck won't fit in the parking garage) so we had his meter and insulin if we really needed to use it. If it had been any other appointment I would've had to turn around and get it from home. I felt like a really shitty mother at that point.
At the appointment they reviewed some stuff with us that we learned at the hospital and then they taught us how to handle things if he ends up with ketones in his urine. We don't even have to call anymore if he gets them unless we can't resolve them after a few failed attempts. It's more math which sucks but I'm happy that I don't have to pray over the test strip anymore because I don't want to have him put back in the hospital over it. That is stress we don't need at the moment.
They looked at his log book and made some adjustments with his insulin again. It's good but also bad because I still have to get up several times a night to check his blood sugar levels just to be sure. The last two nights he has been low and I've had to wake him up and give him apple juice to bring it back up. Both nights he has been pissed because he thinks it's time to get up and he runs straight to the kitchen to find his iPad. Then I have to convince him that it's still nighttime and he has to go back to bed.
After the appointment I dropped Mike off at his truck and drove home. Carson and I had lunch and hung out for a bit before heading down to get Baylee. My sister had jury duty today so her daughter was there too and it was good that the girls got to play together for a bit since they don't see much of each other anymore. Last year they were in the same school together and the same dance class. Baylee is older by 2 years so now that she is in 3rd grade she is in a different school.
When I got to my mom's I took Carson inside to say hi. Huge mistake. I love my mother but she has a hard time accepting things when they have to change and Carson's new diet is a HUGE change for her, and him too I guess. He immediately went to her mini fridge behind the bar and pulled out a can of Coke. She just looked at me with pleading eyes. I had to tell her three times that he couldn't have it. Then he pulled her into the kitchen and motioned her hand to the cabinet that has the cups inside. I was so mad when she actually got one down for him. I kept saying he can't have that!! She eventually put grape sugar-free Kool-Aid liquid in the cup and he was not impressed.
My sister was there to get her daughter and we both just stood and watched as Carson kept pulling item after item out of her pantry trying to get her to give him a snack. Sour cream and onion potato chips, Sun Chips etc. He reached for a banana and she almost gave it to him! "He can have a banana, right?" She asked pulling it off the bunch. "No Mom!" I screamed. "He CAN'T have that! It has TONS of sugar!!" The look on her face was almost sad. She seriously looked like she was going to cry.
At that point I gave up and told Baylee that we needed to pack up and go. My mom has never been very supportive about things with Carson. She just says I could be worse and then goes on to tell me about some story she saw on the news about a kid dying at the hospital. I know it could be worse. It would just be nice for some support. A simple 'I know this sucks right now but it'll get better' would suffice.
So for the most part it was a good day except for my mom being more ignorant about diabetes than I originally imagined. Maybe it's just the grandma in her having trouble saying no but I really don't think so. I think we are going to have to limit our visits over there for a while. The biggest problem now is we don't have a babysitter anymore. Not that Mike and I ever really go out a lot anyway but even for little things like school functions for Baylee I can't trust my mom not to dope him up on sugar (and she doesn't know how to and won't learn how to give insulin injections or check his sugar either). That makes things a tad bit more stressful knowing that we are stuck even more than we were before.
XX
Friday, January 3, 2014
A Week In Pictures
This was Christmas Eve. Carson was not feeling well at all but we still didn't have a CLUE what was wrong.
Christmas morning about 5 am. It's still dark outside. Looking back at these now I see how gaunt he was beginning to look.
Notice how his collar bones are sticking out and how dark he is around his eyes. This was when we called the pediatrician.
This was when I came home from my mom's and decided it was time to go to the ER. For the love of God if your child ever looks like this but doesn't have a fever TAKE THEM TO A DOCTOR OR HOSPITAL! It's amazing how quickly he morphed into this.
Mike and Carson at the ER right after finding out Carson's sugar was over 700. Devastated doesn't even begin to describe the feeling.
This was taken right before the transport team loaded him into an ambulance.
The first night in the PICU. 3 IV's in on arm and you can see they actually had one in the left arm as well but they removed it later when it "dried out".
The next morning in the PICU. As you can see we had a huge room. Our nurse told us later we had the biggest suite in the entire hospital. I told her we would pay for it too :). One good thing is he's awake.
Mike getting to hold his boy after a long night at home worrying.
Asleep and moving out of PICU to the diabetes floor.
Carson's new room (and excellent nurse Erin).
Up and moving Dec 27 when I arrived in the am.
Evening of Dec 27. Finally a smile! We knew we were going home the next day.
Morning of the 28th. No IV's!!
Finally a change of clothes :) Looking much better but still not like my baby boy.
Daddy helping Carson with lunch- the last meal in the hospital!!!
Finally home :)
Wrists days after the A-line attempts. I wish I could punch that guy in the face now lol.
My boy's back!! Half naked and smiling.
Finally seeing his Christmas presents from the grandparents.
Carson's check up on New Year's Eve with the pediatrician. He gained all of his weight back plus some. Got a flu shot and didn't even flinch. Such a trooper.
Carson's diabetic bag. Novolog (fast acting insulin for meals), Lantus (24 hour lasting insulin given at bedtime), Ketostrips (white bottle used for checking ketones in urine. Looks like pool strips to check the ph in a pool), Glucagon (red box for emergencies), needles, alcohol pads and the little black pouch has his meter, test strips, lancet pen and alcohol wipes as well.
So there's our week in pictures. One stressful week. I hope it gets easier.
Thursday, January 2, 2014
The Hospital: Part 2
I got back to the hospital just as rounds were ending for the day. Our schedule was full from 10am to 4pm with classes (except for an hour break for lunch). I told everyone not to come until after 4 because we had to pay attention in the classes in order for Carson to go home when he was ready.
I was happy to see that all but one of the IV's had been taken out of his arm and the heart monitor leads were off of his back too. The IV wasn't hooked up to anything, it was just in case they needed to give him fluids. His ketones were now trace and he was drinking raspberry ice crystal light.
He was very happy to see me and immediately came to me and wanted me to hold him. I scooped him up and held him close. He was finally starting to look like Carson again. His face was just a little puffy around his eyes, presumably from all of the fluids they had given him.
At 10 am our classes started. Each one lasting about (or less) than an hour. It went fairly easily and quick because we were already in the loop for most things because of Mike. They went over how to inject the insulin and how to figure up how much to give him for both what he was eating and also if he is high. The rules are fairly strict too. They change from day to night. The one good thing is that he can still eat whatever he wants - as long as we give him enough insulin to cover it.
We went over what "free" foods he could have anytime (pickles, MOST hot dogs, meat, pork rinds, cheese etc) and what foods we would have to give insulin for (carbs, sugar etc).
They went over how to use his glucose meter and set it up with us. We also went over what to do if Carson's sugar is so low that he is either unresponsive or seizing. That was really the only scary part. The reality. They prescribed us something called "Glucagon". It's basically an epi-pen for diabetics. Think Pulp Fiction when they stab the needle into Uma Thurman's chest. With this we stab it through his pants into his leg, turn him sideways quickly because he will throw-up and call 911.
Our social worker helped us sign up for a program that is here in Ohio called The Bureau for Children with Medical Handicaps or BCMH for short. This will basically be a secondary insurance plan for Carson. It is like Medicaid BUT it helps cover the costs associated with doctor visits and diabetic supplies. Plus she said it will also help cover up to a 5 day stay in the hospital, including the ICU. It was a relief because now that I am staying home full-time we only have about $80 extra a month and that was before we were going to have to pay about $150 a month for Carson's supplies. Poor Mike has been so worried about money. He has been saying that he is going to have to get a second job just to pay for everything.
I offered to get a weekend job but in reality it's not really possible. Sometimes Mike has to work on Saturdays and he is always on call so they may call him in on a Saturday and we don't have anyone who can watch Carson. Before it was easy because we could just take the kids to my mom's since she has been watching him since he was little he is comfortable with her and feels at home at her house. But now that he requires blood sugar checks and insulin injections we have no one who is capable to watch him.
When our classes were over I could tell that each of our 'teachers' seemed impressed with what we knew and how we were handling it. They told me that as long as his ketones were under control we would have a review in the am the next day (Saturday) and would be discharged afterwards. I was so happy.
Later that evening Amber and Amy showed up at the hospital to see Carson (and us too). When I showed them what he looked like before he started getting treatment they both cried. I don't blame them. It really was a shock to see how close to death he was. We talked about school and I broke the news that especially now Carson wasn't going to go to school full-time. She sadly told me she had already figured that. She told me that we need to talk to Jody to see if we would be able to have a teacher come to the house now that Carson is considered 'medically fragile' and they don't have a nurse on staff full-time at the school. She said they would have to hire one just for him. That's encouraging but I still know now that I 100% made the right decision to keep him home. It's funny how those things work out.
My dad showed up right as Mike was getting ready to leave for the night. It was his turn to go home and be with Baylee and all the animals. At shift change the new nurse Nicole brought Carson his dinner. She stayed and chatted with me for a few minutes. I found out that she has a son who has sensory issues as well. I asked her if it would be possible to have the last IV removed since it hadn't been used all day and it was now about 8 pm. She said she would ask.
Carson and I hung out for a bit and watched Look Who's Talking while lying in bed. When he fell asleep I changed his diaper and checked his ketones. Negative!! I went down the hall to the nurse's station to show Nicole. A few minutes later she was back in our room to take the IV out of his arm. That was when I knew that things were going to be okay. He was now free from all leads and IV's and I could breathe.
It was hard to sleep that night. I wrote my first post about what was going on then and tossed and turned when I did finally try to go to sleep. I got up about 7 the next morning and waited. I waited for Carson to wake up, for rounds to begin, for Mike to get there, for our review class and mostly to get the hell out of there. Knowing Carson, I knew that he would do so much better at home.
Mike arrived about 10:30 and the dietitian and registered nurse came in about 11 to start our review. It went very fast. They had a box of numbers which were blood sugar readings and started at 3pm and went through an entire day of 'what would you do?' with the numbers I pulled out of box. We passed with flying colors. They told me that most families were in the unit for 2-5 days just taking classes and trying to wrap their brains around all of the information. They crammed all of our classes into one day! I'm happy they felt so confident in our ability to take care of our baby boy.
Lunch came at noon and we fed Carson his last hospital meal for hopefully forever. They gave him his insulin after he ate and went over our discharge papers and we were off. It almost felt like a jailbreak as we made it to the parking garage with all of our loot (cookbook, books for Baylee, his meter, insulin, test strips, papers upon papers of information etc) and not to mention the most important-Carson.
We were lucky to have the support of our entire team while we were in the hospital. I couldn't imagine what it would be like to just be handed this diagnosis and expected to do it all ourselves. We now have the knowledge we need and the support of them as we go forward. Right before we left two of the endocrinologists stopped by our room to wish us well. They told us that they couldn't believe how well we had taken everything and how well we had retained what we were taught. I thanked them both and told them that although I was devastated and would probably freak out at some point down the road, I knew that it wasn't a terminal cancer diagnosis, it was manageable and I would freak out when I had the time.
It's taken me a while to write these posts from being so busy at home but I have to say I'm not mad or sad or anything anymore. Maybe a little overwhelmed, but who isn't? It is what it is and life goes on. Just now it's 3 hours at a time.
XX
I was happy to see that all but one of the IV's had been taken out of his arm and the heart monitor leads were off of his back too. The IV wasn't hooked up to anything, it was just in case they needed to give him fluids. His ketones were now trace and he was drinking raspberry ice crystal light.
He was very happy to see me and immediately came to me and wanted me to hold him. I scooped him up and held him close. He was finally starting to look like Carson again. His face was just a little puffy around his eyes, presumably from all of the fluids they had given him.
At 10 am our classes started. Each one lasting about (or less) than an hour. It went fairly easily and quick because we were already in the loop for most things because of Mike. They went over how to inject the insulin and how to figure up how much to give him for both what he was eating and also if he is high. The rules are fairly strict too. They change from day to night. The one good thing is that he can still eat whatever he wants - as long as we give him enough insulin to cover it.
We went over what "free" foods he could have anytime (pickles, MOST hot dogs, meat, pork rinds, cheese etc) and what foods we would have to give insulin for (carbs, sugar etc).
They went over how to use his glucose meter and set it up with us. We also went over what to do if Carson's sugar is so low that he is either unresponsive or seizing. That was really the only scary part. The reality. They prescribed us something called "Glucagon". It's basically an epi-pen for diabetics. Think Pulp Fiction when they stab the needle into Uma Thurman's chest. With this we stab it through his pants into his leg, turn him sideways quickly because he will throw-up and call 911.
Our social worker helped us sign up for a program that is here in Ohio called The Bureau for Children with Medical Handicaps or BCMH for short. This will basically be a secondary insurance plan for Carson. It is like Medicaid BUT it helps cover the costs associated with doctor visits and diabetic supplies. Plus she said it will also help cover up to a 5 day stay in the hospital, including the ICU. It was a relief because now that I am staying home full-time we only have about $80 extra a month and that was before we were going to have to pay about $150 a month for Carson's supplies. Poor Mike has been so worried about money. He has been saying that he is going to have to get a second job just to pay for everything.
I offered to get a weekend job but in reality it's not really possible. Sometimes Mike has to work on Saturdays and he is always on call so they may call him in on a Saturday and we don't have anyone who can watch Carson. Before it was easy because we could just take the kids to my mom's since she has been watching him since he was little he is comfortable with her and feels at home at her house. But now that he requires blood sugar checks and insulin injections we have no one who is capable to watch him.
When our classes were over I could tell that each of our 'teachers' seemed impressed with what we knew and how we were handling it. They told me that as long as his ketones were under control we would have a review in the am the next day (Saturday) and would be discharged afterwards. I was so happy.
Later that evening Amber and Amy showed up at the hospital to see Carson (and us too). When I showed them what he looked like before he started getting treatment they both cried. I don't blame them. It really was a shock to see how close to death he was. We talked about school and I broke the news that especially now Carson wasn't going to go to school full-time. She sadly told me she had already figured that. She told me that we need to talk to Jody to see if we would be able to have a teacher come to the house now that Carson is considered 'medically fragile' and they don't have a nurse on staff full-time at the school. She said they would have to hire one just for him. That's encouraging but I still know now that I 100% made the right decision to keep him home. It's funny how those things work out.
My dad showed up right as Mike was getting ready to leave for the night. It was his turn to go home and be with Baylee and all the animals. At shift change the new nurse Nicole brought Carson his dinner. She stayed and chatted with me for a few minutes. I found out that she has a son who has sensory issues as well. I asked her if it would be possible to have the last IV removed since it hadn't been used all day and it was now about 8 pm. She said she would ask.
Carson and I hung out for a bit and watched Look Who's Talking while lying in bed. When he fell asleep I changed his diaper and checked his ketones. Negative!! I went down the hall to the nurse's station to show Nicole. A few minutes later she was back in our room to take the IV out of his arm. That was when I knew that things were going to be okay. He was now free from all leads and IV's and I could breathe.
It was hard to sleep that night. I wrote my first post about what was going on then and tossed and turned when I did finally try to go to sleep. I got up about 7 the next morning and waited. I waited for Carson to wake up, for rounds to begin, for Mike to get there, for our review class and mostly to get the hell out of there. Knowing Carson, I knew that he would do so much better at home.
Mike arrived about 10:30 and the dietitian and registered nurse came in about 11 to start our review. It went very fast. They had a box of numbers which were blood sugar readings and started at 3pm and went through an entire day of 'what would you do?' with the numbers I pulled out of box. We passed with flying colors. They told me that most families were in the unit for 2-5 days just taking classes and trying to wrap their brains around all of the information. They crammed all of our classes into one day! I'm happy they felt so confident in our ability to take care of our baby boy.
Lunch came at noon and we fed Carson his last hospital meal for hopefully forever. They gave him his insulin after he ate and went over our discharge papers and we were off. It almost felt like a jailbreak as we made it to the parking garage with all of our loot (cookbook, books for Baylee, his meter, insulin, test strips, papers upon papers of information etc) and not to mention the most important-Carson.
We were lucky to have the support of our entire team while we were in the hospital. I couldn't imagine what it would be like to just be handed this diagnosis and expected to do it all ourselves. We now have the knowledge we need and the support of them as we go forward. Right before we left two of the endocrinologists stopped by our room to wish us well. They told us that they couldn't believe how well we had taken everything and how well we had retained what we were taught. I thanked them both and told them that although I was devastated and would probably freak out at some point down the road, I knew that it wasn't a terminal cancer diagnosis, it was manageable and I would freak out when I had the time.
It's taken me a while to write these posts from being so busy at home but I have to say I'm not mad or sad or anything anymore. Maybe a little overwhelmed, but who isn't? It is what it is and life goes on. Just now it's 3 hours at a time.
XX
Wednesday, January 1, 2014
The Hospital
About 3 pm Carson was moved from the PICU to the endocrinology/diabetes floor of the hospital. Once we were settled we met our care team; a pediatric endocrinologist, a fellow, a resident, a CNP, a registered nurse, a registered nurse educator, a registered dietitian educator, a social worker, a certified diabetes educator and a child life specialist. All of those people in one room at one time is very overwhelming.
They explained to us that Carson was still very sick and not out of the woods. By this time his blood sugar levels were about half of what they were when he was admitted to the hospital (so about 500) and they had to bring them down slowly so he wouldn't have a seizure or other complication. We would begin classes in the morning to learn how to take care of him at home but he would need to be stable before they could even consider letting him leave. While he looked better, he didn't look great. To be honest, he didn't look like my son. His face had changed, I'm assuming from all of the fluids they had him on.
Each person on our team was responsible for a certain area of our care. I say our because by this point we all needed help. The social worker was the first to talk to us that night. When she asked us how we were doing I burst into tears. By this point I had held it in for about 24 hours and I couldn't even get one word out before I broke down. It was hard not to be mad, sad, angry, and most importantly scared. I just couldn't understand how my sweet little guy who had already been through so much could be handed this too. What did he ever do to deserve this? Now not only could he not talk or walk for very long, or see straight without turning his head to align his eyes, or hear out of one ear or even 100% in the other or comprehend a lot of the world around him and be so sensitive to light and sound and other outside stimuli NOW he has to get this?? NOW he has to have his fingers pricked all the time and suck with needles every day MULTIPLE times??? WHY??? JUST WHY??? I just feel like I'm mourning an innocence lost.
Of course she was great with us. She tried to console Mike and reassure him that him having diabetes had NOTHING to do with Carson getting it. She said it was going to happen anyway. Why now? No one knows. This was just the time his pancreas decided it would stop producing insulin to break down the carbohydrates in his food to make sugar for his brain and body. And she told me that everything that I was feeling was what every parent goes through. What kind of parent would I be if I wasn't upset? I saw her point but I still felt pretty stupid breaking down in front of her the way that I did.
When she left they brought lunch in for Carson to try to get him to eat (at 5 pm). I had ordered chicken, pudding and milk. The idea was to get him to eat as many carbs as he could in 30 minutes and then they would figure the correct dosage of insulin and give it to him. Since he hadn't eaten in days he really didn't care about food or drinking for that matter.
They told us he had to drink 2 oz an hour for 8 hours to try to get the ketones (Normal ketones level in urine is negative. Measuring range is about 0 to 160 mg/dl. Ketones levels in urine are developed in your body when fats, instead of glucose are utilized to produce energy. It is an acid so that it may be harmful to your body when ketones are granted to accumulate. Abnormal ketones assesses may indicative of insulin overdose, nausea and vomiting, strict dieting, severe fever due to infection, diabetic ketoacidosis, insufficient food intake, severe stress, starvation. When acetoacetic acid responds with nitroprusside, color change develops, covering up the range from negative to positive. The test doesn’t react with B-hydroxybutyrate or acetone. Urine sample of high specific gravity and low pH and other substances bearing sulfhydryl groups occasionally afford reactions equal to, and admitting trace (+). Sensitivity is 0.5 mmol/l acetoacetic acid. Active reagent is nitroprusside (7.5% w/w). )
Mike and I decided that he would stay with Carson for the night and I should go home and take care of Baylee. We were trying to balance time between the two so that she wouldn't feel like Carson was more important to us than her. My step-mom Donna and my little sister Montana came to the hospital to see Carson for a bit but he slept the whole time they were there. My dad showed up right as I was getting ready to leave so I only got to see him for a few minutes but he decided to stay with Mike for a while since visiting hours were still going. I kissed my sleeping boy on the head and tried to keep it together as I walked out of the door. Donna and Montana walked with me to the parking garage I guess just to make sure I didn't collapse in the hallways.
I made it the hour drive to my mom's house to get Ms. B, but when I got there she decided that she'd rather spend the night since I would just have to drop her back off there in about 10 hours since I had training in the morning. I was sad but she was right. I stayed for about a half an hour and then made my way home. The drive seemed forever even though it was really only about 10 minutes.
The house seemed so empty when I got there. Of course I had our menagerie of animals but it was so cold without other bodies in the house. I took a shower and tried to eat something-which was pointless. My stomach was too upset. I sat on the couch by the fire and tried to process the last 24 hours. My son was sick. My son was VERY sick. My son almost died. I went into his room and sat down on his bed. I looked at his toys and his trains on the wall. I could smell his scent on his bed. It felt so empty and wrong for him not to be there. That's when it REALLY hit me. I almost lost him. Had we waited until morning he probably wouldn't have made it. The knot in my stomach was almost too much to bear. That's when I lost it. I cried and sobbed and cried some more. I cried until I literally didn't have energy left to cry anymore.
Mike texted me and told me that he was awake and drinking. He was getting ready to feed him dinner. He said his ketone levels went from moderate to small which is a good sign that his body was healing.
I went to bed and tried to answer all the texts that I had gotten but fell asleep long before I could look at every one of them. It felt like I blinked and my alarm was going off.
More later.
XX
They explained to us that Carson was still very sick and not out of the woods. By this time his blood sugar levels were about half of what they were when he was admitted to the hospital (so about 500) and they had to bring them down slowly so he wouldn't have a seizure or other complication. We would begin classes in the morning to learn how to take care of him at home but he would need to be stable before they could even consider letting him leave. While he looked better, he didn't look great. To be honest, he didn't look like my son. His face had changed, I'm assuming from all of the fluids they had him on.
Each person on our team was responsible for a certain area of our care. I say our because by this point we all needed help. The social worker was the first to talk to us that night. When she asked us how we were doing I burst into tears. By this point I had held it in for about 24 hours and I couldn't even get one word out before I broke down. It was hard not to be mad, sad, angry, and most importantly scared. I just couldn't understand how my sweet little guy who had already been through so much could be handed this too. What did he ever do to deserve this? Now not only could he not talk or walk for very long, or see straight without turning his head to align his eyes, or hear out of one ear or even 100% in the other or comprehend a lot of the world around him and be so sensitive to light and sound and other outside stimuli NOW he has to get this?? NOW he has to have his fingers pricked all the time and suck with needles every day MULTIPLE times??? WHY??? JUST WHY??? I just feel like I'm mourning an innocence lost.
Of course she was great with us. She tried to console Mike and reassure him that him having diabetes had NOTHING to do with Carson getting it. She said it was going to happen anyway. Why now? No one knows. This was just the time his pancreas decided it would stop producing insulin to break down the carbohydrates in his food to make sugar for his brain and body. And she told me that everything that I was feeling was what every parent goes through. What kind of parent would I be if I wasn't upset? I saw her point but I still felt pretty stupid breaking down in front of her the way that I did.
When she left they brought lunch in for Carson to try to get him to eat (at 5 pm). I had ordered chicken, pudding and milk. The idea was to get him to eat as many carbs as he could in 30 minutes and then they would figure the correct dosage of insulin and give it to him. Since he hadn't eaten in days he really didn't care about food or drinking for that matter.
They told us he had to drink 2 oz an hour for 8 hours to try to get the ketones (Normal ketones level in urine is negative. Measuring range is about 0 to 160 mg/dl. Ketones levels in urine are developed in your body when fats, instead of glucose are utilized to produce energy. It is an acid so that it may be harmful to your body when ketones are granted to accumulate. Abnormal ketones assesses may indicative of insulin overdose, nausea and vomiting, strict dieting, severe fever due to infection, diabetic ketoacidosis, insufficient food intake, severe stress, starvation. When acetoacetic acid responds with nitroprusside, color change develops, covering up the range from negative to positive. The test doesn’t react with B-hydroxybutyrate or acetone. Urine sample of high specific gravity and low pH and other substances bearing sulfhydryl groups occasionally afford reactions equal to, and admitting trace (+). Sensitivity is 0.5 mmol/l acetoacetic acid. Active reagent is nitroprusside (7.5% w/w). )
Mike and I decided that he would stay with Carson for the night and I should go home and take care of Baylee. We were trying to balance time between the two so that she wouldn't feel like Carson was more important to us than her. My step-mom Donna and my little sister Montana came to the hospital to see Carson for a bit but he slept the whole time they were there. My dad showed up right as I was getting ready to leave so I only got to see him for a few minutes but he decided to stay with Mike for a while since visiting hours were still going. I kissed my sleeping boy on the head and tried to keep it together as I walked out of the door. Donna and Montana walked with me to the parking garage I guess just to make sure I didn't collapse in the hallways.
I made it the hour drive to my mom's house to get Ms. B, but when I got there she decided that she'd rather spend the night since I would just have to drop her back off there in about 10 hours since I had training in the morning. I was sad but she was right. I stayed for about a half an hour and then made my way home. The drive seemed forever even though it was really only about 10 minutes.
The house seemed so empty when I got there. Of course I had our menagerie of animals but it was so cold without other bodies in the house. I took a shower and tried to eat something-which was pointless. My stomach was too upset. I sat on the couch by the fire and tried to process the last 24 hours. My son was sick. My son was VERY sick. My son almost died. I went into his room and sat down on his bed. I looked at his toys and his trains on the wall. I could smell his scent on his bed. It felt so empty and wrong for him not to be there. That's when it REALLY hit me. I almost lost him. Had we waited until morning he probably wouldn't have made it. The knot in my stomach was almost too much to bear. That's when I lost it. I cried and sobbed and cried some more. I cried until I literally didn't have energy left to cry anymore.
Mike texted me and told me that he was awake and drinking. He was getting ready to feed him dinner. He said his ketone levels went from moderate to small which is a good sign that his body was healing.
I went to bed and tried to answer all the texts that I had gotten but fell asleep long before I could look at every one of them. It felt like I blinked and my alarm was going off.
More later.
XX
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