Last week I received a contact call from my hospital. I found out that my Creatinine and Urea numbers were bad. By looking back at previous tests the Hospital found out that my dialysis was on the decline since I started peritoneal dialysis. They gave me a couple of options on how we could fix it in hopes to get the dialysis working. The one we decided on requires me to add an extra bag of solution to my machine hook up at night. It is called Extraneal. What happens is I continue on dialysis like normal but at the end this solution will place 1000mls into my peritoneum in the abdomen. (in layman’s terms in my stomach area of my body) I hold that fluid in my body all day and then when I hooked up in the evening the machine will drain it out.
I am not a fan of carrying around fluid all day but we are going to try this first. If it becomes a problem or doesn’t work there are other steps I can do. My fear was that I was going to be put back on Hemodialysis. Thankfully at this point that isn’t happening. I hope this step that I am about to start tonight works and I can continue with PD until I get a transplant.
My 8 year old is amazingly smart, the problem? He is lazy!
He finds ways to get out of doing school work and sadly the teachers have let him get away with it. He claims he is feeling ill or has a headache. This past Monday we met with his teacher and resource teacher of finding ways to help him.
The one thing is helping him become more independent. This one is not only hard for him but also me since he is my last “baby”. You never realize how hard it is to let go until your youngest starts growing up. Then you hold on to the little things you do for him. I haven’t pushed him like I have pushed my daughter. So now he is being more responsible in the morning and surprisingly it has been quite easy. He does it with no question and now I wonder if all along I wasn’t actually helping him to move faster but holding him back by doing it. I have to say it is a bit of load of my morning schedule for him to get himself ready. I still pick out his clothes but he puts them on and then goes to the bathroom and brushes his teeth. He also receives a sticker daily at school in his planner if he had an independent day and there has yet to be a day without a sticker!!
The second thing we are working on is his printing. While he is smart his ability to write down on to paper is lacking. So each night we do a journal and he is learning to pace himself at work when writing so that everyone can read his work. He has been doing well with that as well. He does try to stall by complaining that we have to do another journal but once he sits down he does complete it.
I am hoping with just those two things it will help him with the rest of his school work. They tried testing him in school but he rushes and then the test isn’t accurate. So really the school has no idea what he CAN do because he doesn’t have the patience to be tested. My husband feels that threatening to take his PS3 away or his computer away if he doesn’t do it is the key. I think that we need to show him he needs to do it to be those wonderful careers he wishes to be. (mayor, army man, police officer)
Hopefully he finally does because then maybe they can see what I see with my son. I know he can do a lot more then they believe and it is frustrating having to hear over and over he can not when he does do it at home.
Do any of you have some problems with your children not doing what they need to at school? And how have you succeed in getting them to do the work or how are you trying to get them to do it?
On Friday, I was in a hurry to get unhooked from PD because we were running late and I had to get my kids to the stop in time for school.
When you get unhooked from pd, you have to close the catheter that is in your body and then close the clamp on your machine tube that connects to you. I closed the machine tube and unhooked. I did not close the catheter! Fluid sprayed everywhere (at the end of dialysis my stomach fills with 200 mls for comfort so the catheter has padding in my body) and I closed it right away! I then got my children ready for school and sent. While I did this my husband called the dialysis unit to inform them and make sure it was okay that it happened.
From my training I knew it probably wasn’t. The catheter opening had been contaminated by air. Sure enough, I was correct and I was informed I had to get into the dialysis unit for antibiotics. Once in the unit, they drained the fluid that was left in me. Added fluid from a twin bag (a small bag of fluid that is similar to those I place on my dialysis machine) to my drain bag and then injected 2 antibiotics into the bag that was going into me on the twin bag. (the twin bag is called a twin bag because there is 2 bags, one with fluid and one is a drain bag.) Once the fluid and meds were in my body, I had to sit for 15 mins. I have an allergy to penicillin and these meds were for those that were allergic but still could cause a reaction. I received a drain bag, masks and isogel in case there was an issue on the way home. I had to drain right away and get to a hospital. (nothing ended up happening but at least we were prepared for it!) This fluid had to sit in my stomach a minimum of 6 hours before being drained on my dialysis machine.
The nurse doesn’t believe there will be a problem but we took care of it just in case. For the next week I just have to make sure I do not get pain or run a fever. I believe I will be fine. This is how a simple mistake could be a bad one. Hopefully I never make it again! I feel very foolish that I made this one mistake, but I figure since it is my first one and I just got the machine in July, I am doing pretty good!
Well a lot has happened this summer that caused it to go by quite fast! After my PD surgery. I had training to use the machine for a week.
What the machine does is it drains me first to make sure all fluid is out of my cavity, then fills me up with fluid (I am on 2000 ml now each fill) and sits for an hour. Then it drains out and fills me up again. This is done for 6 cycles a night. At first the draining hurt. They stated it was because it was new. They were very correct because now it feels like intense hunger pains. I can handle that feeling and I have no problem sleeping through the draining. (it only happens at first and last drain) I am loving PD Dialysis now because it doesn’t drain me the way Hemodialysis does. After Hemo you can barely move. You feel worn out in ways I can’t even begin to explain. And at the same time you are insanely hungry.
Just a week ago I had my perm catheter removed from my chest. This was done by freezing needles. Sadly the freezing didn’t take for me (i don’t know why because the last time it did) and I felt the scalpel. The doctor then placed in 2 more needles. I was frozen but still felt pain due to doctor hitting a bone during removal. It hurt a lot. But nothing really serious went wrong so I am thankful. I did cry like a baby though. Thankfully I wont need this catheter placed back in.
Now I am just enjoying life and spending time with my family. I am now able to help out at the school more and being more involved with the kids. It is such a different story from last year when I was too tired to move most days.
From time to time on this blog I will speak about my journey. I currently have kidney failure which they believe to be called Alport disease. The disease not only affects my kidneys but also my hearing. It can also affect eyesight but I have yet to have that issue.
Last Wednesday I went for surgery to have a tube placed in my stomach. It allows me to have dialysis in the home. It is done with fluid instead of my blood.
First they placed IV in to me and started the antibiotic along with some gravol. When they gave me gravol it made me very calm and put me to sleep. I slept for an hour and then I was told it was my time for surgery. I had make sure my bladder was empty. By then the gravol was done and I was awake. I was wheeled into a room that looked like a cross between a xray and ultrasound room. They placed me on the table and started to prep. While doing so I was freezing so they gave me blankets.
They had hooked me up to morphine and a sedative which allowed me to be awake when they needed to me but also allowed me to be calm enough to sleep. Then about 30 mins into it they started the process. Which meant they stuck me with 6 freezing needles. I screamed quite loud throughout this process. I am not one for needles. Then they begain the process, I was quite out for most of this until they asked my to puff out my stomach. They watched on a screen to make sure the tube was placed in the correct spot. Then after 2 and a half hours, they sewed me up and sent me to recovery.
I was in recovery for an hour while they checked my blood pressure every half hour and my body temp. Then I was able to go home.
I had my first flush this past Wednesday and have to give myself 2 more next week. I also learned how to change my dressing as I have to do this daily. The plus side on all this is in 2 weeks I will be able to do dialysis in my own home as well as be able to travel.
It is another hurdle that I have jumped and hopefully one more to recovery! Next step, getting home and then putting myself through testing to be placed on transplant list.
Welcome to my Blog! Hoping to capture some of the adventures that my children and I have together. I also will be linking a lot of contests and free sample sites. And tips on how to save money. Pretty much it is a blog of everything that I do or deal with in my life! Hope you enjoy the journey with me and my family!