Tuesday, May 29, 2012

Second Hemo Treatment

Today was my second day of hemodialysis. Saturday I had my first treatment and it went alright although it was nerve wracking with all the strange beeping on the machines. Also, one of the workers who unhooked me from the machine at the end, did not wear his mask. This is so dangerous and I've worried about it all weekend. Not worried that anything was wrong with me, but just worried because I did not stand up for myself properly. I won't make that mistake next time.

Todays treatment was a lot easier emotionally, but horrible physically. I limped out of the center at the end because I got horrible muscle cramps in my shins. I made sure to eat something right away and I was alright for about an hour then I started sweating, feeling shaky, confused and nauseous. I pretty much felt this way the entire rest of the day. As soon as we got home I crawled into bed and slept... and thats where I am headed back to in a few minutes.

Monday, May 28, 2012

Ferry Boat Ride and Gig Harbor

Today the whole family, including my Dad and Sister took a ferry boat ride from Fauntleroy to South... (something... ) and then drove to Gig Harbor. It was very windy and chilly on the ferry, but beautiful! It has been about two years since we were last on a ferry boat and Kaleb couldn't even remember what a ferry was.

Kaleb, Kirby and Kyle - 5/28/2012

Me and my husband Jeremy

Kirby and Auntie

After the ferry ride we drove for a ways and saw some signs for a park called Long Lake, where we stopped and let the boys play and eat their lunch.

After the short trip across (about 20 minutes) we drove through Gig Harbor and stopped for lunch at Kelly's Cafe. We were going to eat at the Red Rooster restaurant but they told us they were under staffed and it would be an hour wait! Kelly's was a great choice. Good food and delicious ice cream! Although Kirby, the lover of cookies, had a huge cookie insteads of ice cream.

All in all it was a beautiful and pleasant day!

Saturday, May 26, 2012

I'm home!!

Four days and five nights in the hospital and I am finally *home*! I am sooo thankful to be here, spending time with my kids. Watching them play and laugh and yes fight from time to time. Hehe. We even went for a very short walk in our neighborhood and looked at our garden this evening. We have many strawberries growing!
 In the few hours I've been home my poor little Kirby has cried several times and we have laid hands on him for healing. He is having some re-accuring leg pain but so far that is the only symptom and I am continuing to believe in God for his healing touch (I wrote a post a few months back about Kirby's fevers and leg pain).
I'm thankful for my family and happy to be out of the hospital!

Current Homeschooling Plan

So this ratty teddy bear doesn't really have anything to do with home school... other than he's always here and very very loved by one little boy! (Kirby)

Things have been a little up in the air due to my health issues and also due to lack of finances as my husband has been out of work since December. Originally my goal was to start Kaleb on more of a regular curriculum when he turned 5 years old in May. Last fall I bought him a few items to work on, this is what we tried:
PS: For those people who are against educating children too early, please be sure to read to the bottom of this post as I do touch on that subject.

Before Five in a Row (Mainly reading the book a few times during the week and trying to do some activities but not always so successfully)
Apologia Zoology 3 (I would just read a few pages at a time)
What your Kindergartner needs to know (In steads of being a guide on what to teach your kids, this book actually has specific things to teach them. It has a section on pretty much everything, math, geology/history/social studies, music, art, etc) - Basically I would pick something from this book and go over it a few times a week.
Reading/Language Arts - I put a LOT of focus, prior to getting so sick, into reading reading reading. My goal was to read more living books and Bible stories than anything else. I figured if I didn't get anything done in a week but to read to them, it was OK. I also got different books on tape from the library and Kaleb and Kirby both enjoyed listening to those.
Teach your child to read in 100 easy lessons - To be honest 100 lessons is a lot for me and Kaleb is a smart boy, I think he could learn to read sooner so we might try something else as at this point we've only gotten to lesson 8.
Bible - For Christmas my whole family (My Dad, Mom/Step dad and Sister) blessed us by each buying one set of the Your Story Hour Cd's, we ended up with 4 sets. The sicker I got the more Kaleb was allowed to listen to these Cd's, they are wonderful and I listened to them as a child! I have no experience with the History Cd's they sell but I'm sure they are wonderful and someday I would like to be able to buy those to try out. Here's my post from a few months back on the Your Story Hour.

Once I am able to buy new curriculum we will be tweaking things a bit and adding some new things. One main thing is I have finally decided I will be teaching the boys Latin first, and then move on to Spanish as they get older. The other thing that is important to me is to teach them about classical music and composers, that's something I didn't get much of as a child and I think it is important for them.
The plan is to home school year round with natural breaks in between as life guides us. Also, Kaleb is still young and really doesn't need a formal education yet. I am trying to nurture a love for learning so even though I listed 'set' curriculum above, I go with his flow... if he is resistant, we do something else. The biggest issue is hand writing. I really feel he should be practicing writing his alphabet at this age, but he hates it. I am not quite sure yet if it would be better to drop it all together until he is closer to age 7 or until he doesn't resist it (whichever comes first). It is so important to me that my kids develop a love for learning. I also encourage and insist that they spend a LOT of time outdoors playing and exploring, which they do. Just last week my husband and I and Kaleb and Kirby were walking down the road looking for ants and other cool bugs when a local city utility worker who was apparently watching us says "Science class?" to which I replied "yes, exactly!". lol

A view of the ever important book cases - my two youngest boys sure love their books!

Now on to the subject of Kyle's school work (cringe).
Kyle, 16 yrs old and a Junior in High school:

Here is what the plan was for 2011/2012 curriculum:

My Fathers World Ancient History (this covers language arts, Bible and History)
Apologia Biology
Teaching Textbooks Geometry
Spelling (two semesters of spelling, I can't remember the name of the books at the moment)
Health Class - two semesters of online health class through Horizon
Rosetta Stone Spanish
Probably something else I'm forgetting at the moment

In steads of what you see above, what has mainly happened is the My Fathers World Curriculum and the spelling. Unfortunately due to all my health problems, Kyle has gotten behind in his schoolwork. He did start to get behind before we found out I was sick as well...staying on target is hard for him and he gets distracted easily which is a BIG reason why traditional school was not working. I think school at home actually is working better. He knows that he might be graduating late at this point, but he seems to be alright with that and I think it is better than pushing pushing pushing and making him so frustrated about graduating that he quits. Because we did not start homeschooling until his 9th grade year, the normal habits that most home school kids develop haven't quite developed yet. Such as being more self motivated.

Friday, May 25, 2012

Chest pain and a hospital stay - post #2

So a few days ago I posted about how and why I ended up in the hospital. Currently I have spent 4 nights in the hospital and since my last post I have had a total of 6 chest x-rays, two thoracentesis's, surgery on my left arm fistula, and a cat scan. And a lot of other issues inbetween.... lol. Over the last few days my Nephrologist tried a few 'tricks' to reduce the fluid under the lung, such as only putting one liter of fluid in my abdomen insteads of two. Unfortunatly that plan didn't work and during my thoracentesis on Thursday they pulled out one litre of fluid from under my right lung, more than what was pulled out the first time.

The current end result is that I have been removed from doing Peritoneal Dialysis (PD) and today (supposedly before noon) they are placing a direct line into my chest. This will serve as a temporary access for doing hemodialysis. In a few weeks my fistula on my left arm should be ready and then the direct line access can be removed. My Doctor is also hoping that the hole in my diaphragm (which is what has caused the fluid to leak) will heal itself over the next few weeks so that I can return to doing PD. I did talk to my Doctor and let him know that if there is anything humanly possible (including surgery) I am willing to do it so that I can keep doing PD. As I've tried to explain in other posts, although I'm not sure if I've been able to make it make sense, Peritoneal Dialysis is a lot better for me than Hemodialysis will be. With PD I have a lot more freedom, sure its an every day thing but its mainly at night and so it allows me to feel good during most days, and to spend quality time with my family. Quality as in feeling good and being active. The issue with Hemodialysis is that it is done in center and takes 4-6 hours three times a week. The process of hemodialysis is very hard on the body and patients usually spend a lot of time feeling sick. My main concern has been not being able to be the mother I want to be. I want to continue to teach my children at home and that could change if I was on HD permanently.

If you would like more information on what the different types of Dialysis entail, please check out these links:

And if you've ever considered being a live donor and donating one of your kidneys to a person in need, check out these sites:

Tuesday, May 22, 2012

Chest pain and a hospital stay

Starting Friday I noticed pain in my chest, it got increasingly worse throughout the weekend. It was hard to breathe and bending over or changing position made it more difficult to breathe and often resulted in coughing. On Saturday I called the PD (Peritoneal Dialysis) clinic and talked to one of the on call nurses. The nurse I talked to felt that the discomfort was most likely due to an overload of fluid and that I should try to remove the fluid by increasing the dialysis solution (using a higher concentrate of dialysite will draw out more fluid). During Saturday and Sunday I increased the strength of fluid, using 2.5% solution on the cycler at night and during manual exchanges. I successfully pulled off extra fluid but when I woke up Monday morning I noticed the discomfort in my chest was a lot worse and it felt like my lungs hurt. If I bent over even a tiny bit it was painful. I called the PD clinic again and talked to another nurse who told me to go to the ER. When I got there the ER Doctor ordered an EKG, blood work and a chest xray.
What they found was fluid underneath my right lung. I was taken upstairs to have a procedure called a Thoracentesis. I had to sit on the edge of a bed, a Doctor numbed my back with lidocaine and inserted a catheter between my ribs on the right side and then drew out the fluid. The process was relatively simple although highly stressful (when I don't know what to expect I get very nervous... and I really don't like needles!). One of the nurses asked me if I wanted to see the fluid and I said yes... it was a large glass jar similar in size to a quart mason jar and it was 3/4's full... for a total of 900 ml that was extracted from underneath my lung.
The fluid was submitted for tests so that they could figure out where the fluid was coming from. If the fluid is dialysite that means that there is a leak in my diaphragm allowing fluid to get under the lungs. If the fluid was not dialysite, just regular fluid than that would mean I was under fluid 'overload' and we would need to increase my dialysis.
Last night I spent the night in the hospital and this morning my Nephrologist came to visit me. He told me he thinks that the liquid is most likely dialysite that is leaking through a hole in my diaphragm. He said that this happens to only 1% of patients. They are going to keep me on PD (peritoneal dialysis) throughout the day and night (yes, another night in the hospital) and do another chest xray today and tomorrow. If more fluid builds up under the lung that will indicate to my Doctor that it is dialysite. If it is dialysite they will remove me from PD and I will have to switch to doing Hemodialysis. Since my fistula (the vein and artery that were connected in my upper arm to create a large access for doing hemodialysis) is not ready that means they will insert a catheter into the main artery in my chest for hemodialysis until the fistula is ready. The issue with the chest catheter is it has a higher risk of infection due to the fact that it is a direct access to your heart (so any bacteria traveling through it would be lethal). You also can not shower with this type of access.
The Doctor is also scheduling surgery to have my fistula brought closer to the surface of the arm (I have deep veins). Their thinking is while I am in the hospital they might as well get the surgery taken care of. Makes sense to me, although I dislike surgery and don't recover as easily as I wish I would.

I will update again when I know more. In the mean time we are praying for complete healing and I am trusting the Lord to take care of me!

Sunday, May 20, 2012

The Potassium Supplement Has Arrived

A few days ago I posted my losing battle with potassium. After several weeks of struggling to get my potassium levels to an acceptable range I finally admitted defeat and told my nurse I would take the supplement. Thanks to the magic of the phone and mailed prescriptions, that supplement has arrived, already. What I was expecting was a pill that I would take once or twice a day along with my other rapidly expanding array of meds. Well, thats not what I got. Oh no. What I received was little packets of 'powder' that say to add to water and take..... FOUR times a day! Yes, you read that right. FOUR times a day. Someone please tell me how a busy mother of three who has a horrible memory to begin with is going to take a supplement four times a day? I honestly cried when I read those instructions... but it was  a rough day physically so I think I'm allowed the tears.

Saturday, May 19, 2012

Nothing like a slap of reality to keep you on your toes....

Friday night I spent a pleasant dinner with my sister, dad and my Aunt Susan who came to visit us for the week from Boise, Idaho. When I got home in the evening it was pretty late and I went to hook up to the cycler (dialysis machine) for the evening. When I walked into the room, my husband had set up the machine for me and it was all ready to go. Right as I was about to start the hook up process (this includes proper hand washing procedures, putting on a mask, using hand sanitizer, etc) I noticed that one of my cats was sitting by the drain cord coming from the machine. Issue number one... the cats can NOT be in the room when I am doing dialysis due to the risk of infection if they decided to bite a cord. I stood there staring at the cat because I just had this odd feeling. Right then Jeremy came into the room to throw the cat out and I decided to check the cord that had been near the cat... sure enough, he had bit the cord. We removed the cat from the room (after I gave him a big talking to... yes, the cat) and my loving husband had to throw out the two bags of fluid and all the cords and set the machine up all over again (the set up process takes about 20 minutes).

I must admit I thanked God for the angels watching out for me... that was really a scary moment because I knew how serious it would have been if I had NOT seen the cat before I started the machine or if I had not checked the cord. For those that might not be aware, dialysis is a very tricky process and there is a high risk of infection. Dialysis patients can die from the infections if they aren't caught in time and/or it can cause scarring on the inside and the patient has to switch to doing hemodialysis (there are a lot of reasons why having to switch to hemo would be bad).
Once the machine was set up, I hooked up and went through the initial drain process (this is where the machine drains all fluid that is inside). After the drain, the first fill is supposed to start, but insteads an alarm went off on the machine that said "check heater line". The next 30 minutes were spent trying to figure out what on earth was wrong with the heater line. Jeremy checked every inch of cord on the machine and we couldn't find any problems. So finally I realized I had to call Baxter, which is the company that manufactures the machine. Lucky for us they have 24 hour staff to answer and troubleshoot any problems. The gentleman on the phone was very friendly and walked me through the process of checking the cords and trying several different things. Finally he determined that we needed to.. start all over... again. So for the third time that night, my sweet, loving husband set up the machine for me. It wasn't until midnight that I was finally able to crawl into bed and sleep.

Thursday, May 17, 2012

Potassium... the battle has been lost.

One of the issues while doing Peritoneal Dialysis is that the dialysis process strips protein and potassium out of the body each time I do an exchange. Since I started dialysis I have added extreme amounts of potassium, through foods, into my diet. For example, a banana is considered one high potassium serving. I've been eating the equivalent of 4-5 high potassium servings a day. Usually I eat bananas, kiwis or potatoes as those are the easiest way for me to get my potassium.
Unfortunatly every time my nurse checks my blood for potassium it is still low. So now I have to take a potassium supplement. That is one thing I've noticed with being under constant medical care is they want to give a supplement for everything. I've also been prescribed calcitrol and I'm given an iron shot every two weeks due to anemia.
While talking to my nurse on the phone yesterday about the potassium she says to me "Well, we just need to get you a new kidney!". Yep... that would be the plan. 

Saturday, May 12, 2012

A Candy Themed Birthday Party!

On May 5th my wonderful, crazy, inquisitive middle child turned five years old! We celebrated his Birthday on Saturday with a small (family and a few friends) candy themed party! That is one thing to know about Kaleb... he is not a cake, cookie kind of kid, he is all about the candy. So candy it was!

Kit Kat M&M Cake!

Lots of candy!

Birthday boy with his new skate board and basketball hoop!

What candy party would be complete without a pinata?