Oddities, Profundities, Profanities and Dad Stuff

Tag: kidney (Page 2 of 3)

Why I stay home, part 2

Hello again.  Guess what? I broke my visitor record yesterday and I like it.  Today I feel like doing the Rocky and Bullwinkle thing.  “When we last left you Frostbite Falls was falling into …”   The real from yesterday, I was talking about how I quit working to go back to school and ended up with a 1 year old in the hospital for Kidney Failure.

Today we will start there.  For 16 weeks I went back an forth between the hospital with my wife and 1 year old, and home with my 7 and 5 year olds.  School had not started for the little one so babysitters were plentiful for a few hours each day.  That kind of contradicted our “We will raise our kids” mantra but it couldn’t be helped.  I was still home with them at night and as much as I could be.

After she got out of the hospital, she didn’t have kidney’s any more.  The disease that she had was a genetic mutation and required removal of both kidney’s before they became cancerous.  Without kidney’s my little one year old needed dialysis daily.  At first I took her 20 miles every day to the University of Utah to get dialysis.  We tried dialysis at home but it didn’t work after 3 months of trying.

As of September 2007 she needed dialysis 4 times per week and it was my job to take her.  My wife had to work to keep the insurance that was paying for all of this.  One month of dialysis treatments was almost $22, 000.  Insurance is good.  There was no way that I could make enough money to pay the mortgage and no way I could get insurance to cover her medical bills.  They ended up at around $900,000 for 2007.

So my job was to take the baby to dialysis and be the stay at home parent for the other kids so my wife could work.  That lasted 2 years to the day and I cannot for the life of me decide why I never got into blogging before.  I had looked into several “make money on the internet with my scam” programs but didn’t find anything useful.  I had heard about blogs, I was writing several times per month on a blog (I didn’t put the two together before.  I had a blog in my thoughts as a bad thing).  That whole time in the hospital and through dialysis to her kidney transplant is all recorded at www.carepages.com with pagename ameliarosematthews.  That should have been a clue to me that I could do something else and blog elsewhere.

Now all of the doctor visits are once a month and not too big of a deal to get to.  I am still home taking care of the house because I still haven’t finished school.  We are trying to decide now what to do in July when baby #4 comes.  I think I will have to work for a while to pay the bills and leave the wife home and maybe I can get back to school.  That is why I have started working so hard here, on this blog.

I can see there is money making potential.  I don’t need much, just to be able to pay the bills and some tuition to an online college.  I still want to stay home.  Who in their right mind wants to go work if they don’t have to?  If it takes 3 months to start being successful as a blogger, then I am 1 month into it.  I have taken loads of expert advice and I think I am doing the things that need to be done.  I love to write and am still writing a couple of books but they are not going to be published any time soon.

I think I have what it takes to break that 3 month “barrier” and be successful.  I don’t have many distractions, no work to get to or a pile of things to do.  I will still be here in April, well past 3 months, and then well past then.  And I plan on making money about that point so that I can still stay home.

I am a stay at home dad.  I am a blogger.  I will be good and successful at both.

My 4 year old’s 1 year Birthday is today!

Today marks 1 year since my daughter Amelia received her Kidney Transplant!  This is a copy of the post I put up today on our Carepage, the family blog that keeps grandmas and friends informed of what has happened with Amelia.

I have posted links to copies of that Carepage, the posts from the day of the transplant and the day before.  These links are on my website.  If you click any links on those pages, it will direct you to the Carepages site where you will have to register in order to see more.  Feel free to, but you don’t have to.  This is the direct link to her page: www.carepages.com and her carepage name is ameliarosematthews.

anyway, this is a direct copy of  todays post on the Carepage:

12 May 2010

Well friends, it is finally here, Amelia has had her new kidney for 1 year!

We keep looking back at how fast it has actually gone.  From the Transplant on the 12th,  to her going home on the 18th (6 days in the hospital for a MAJOR surgery kids, she is a trooper!).

Through all of the clinic visits and blood draws, 2X per week for the first month, 2 blood draws and 1 clinic per week for the second month, Every other week clinic and weekly blood draws for the third month, every other week clinic and blood draws for month 4-6, and then to once a month.  After our next visit in June, We will be on quarterly clinic visits and monthly labs.  That is quite a drop!

By my calculations, that has been 32 blood draws (plus a couple of unscheduled ones for illnesses) over the year, 20 of those coming in the first 3 months!  That was a lot of poking for Amelia.  Now, at once a month, it is much easier on her.  She is still a trooper with it though.  She stick her arm out and lets them poke her, and then tells everyone she sees where she got poked!

The nurse at transplant clinic gets told which arm to do blood pressures on because she can’t do them on the same arm as the poke!  I really love the determination of a 4 year old.  Some days it is interesting to see just how much she remembers and knows about the procedures she has gone through.

She continues to do very well in her overall health.  There have been a couple of bumps over the past year but nothing that required her to be hospitalized for.  We are pretty proud of that, many kids who get transplants are back in the hospital multiple times.

We have kept her away from many situations that could compromise her health and we don’t take her many places if she is sick.  That has helped.  We are looking forward to getting back to church and church activites more.

Right now, she is only on 2 regular medications, much better than the 8+ she was on last year after transplant.  We tapered them down and now, she is only on the 2 anti-rejection meds that she will be on for the rest of her life.  Just a reminder, these medications keep her immune system slightly suppressed to prevent rejection.  This is why we have to be careful and still steer away from sick people, she can’t fight diseases as easily as the other kids.

It has been a wild ride so far, we hope to keep going in the same direction.  Amelia is currently in the final stages of potty training, something that was much delayed with dialysis and the fact that no urine is produced with no kidney’s.  She is finally figuring it out and is almost half way to her one month “no accident” prize!

We also wanted to thank Carol again and again for her gift to Amelia.  It is still a wonderful thing that we think about every day.  When we think back to dialysis and how we had to structure our lives around it we can’t help but think how Carols donation has helped out whole family.  We have much more time together.

We are looking forward to having a barbecue with Carol and her family this Saturday if the weather will cooperate.  We will have to see.

And finally, I thought I would list the links back to the day before and the day of the transplant, if you are interested in reading about it as it happened.  Brenda still has a hard time reading some of these and so do I.  I am working on a book right now about this whole experience and I am going to use these carepage posts extensively.  As for today,

Amelia Meets Carol 5-11-09, day before transplant

Day of Transplant

Update 1 of 5

Update 2 of 5

Update 3 of 5

Update 4 of 5

Update 5 of 5

We wanted to thank all of you who have been with us since the beginning, and all of those who have joined us on the way over these past 3 years.

I hope that we have been able to explain what has happened to everyones satisfaction.

I hope that we have been able to give some help along the way (Hi Pollock family!).

We appreciate all of the support that has been given to us over these 3 years.  We have had a wonderful outpouring of love and support from all of you.  Our lives have been blessed and we feel like you are all a part of our extended family.  Thank you again and again.

We are coming to you live and kicking 365 days into the new kidney!

-Justin

PS look for new pictures!

Why do Doctors have all of the time in the world?

I took my 3 year old to her transplant clinic appointment today.

I have taken her to many of them since she was diagnosed with kidney failure, and all through dialysis and now 7 months after her transplant.  It continuously amazes me how those clinics could give a jolly jack fart about your time yet freak out if you are any bit late to the appointment.  Granted some times it is quick but good grief.

Today, after I registered at the hospital (15 mins) and then waited for labs to be drawn (25 mins) I was about 20 minutes late for our appointment.  I thought that we would be next in line and sail through.  But I was of course WRONG!!!  although it was only another 35 minutes of waiting in the waiting room followed by another 20 of waiting in the clinic room.  All told, we spent 2 hours and 20 minutes for what amounted to 5 mins with the doctor and about that with the dietician and the social worker.

Oh well.  what can you do.  It’s not like complaining does any good, they just say that they are busy.  So what exactly is the point of making an appointment?  For that matter, what is the point of not just coming a half hour late?  I am sure you would still have to wait.  I should have brought my ketllebell, that would make them wonder, a sweaty guy swinging iron in the childrens hospital….maybe next month….

Justin

www.brendasquiltshop.com

www.carepages.com    pagename   ameliarosematthews

Poetry Wednesday: The discombobulated edition

I know I know, Poetry should be on Tuesday.  But this week I am a day off.  Let’s get right to it then!

Peritoneal dialysis

Image via Wikipedia

This poem was written at a conference we went to at Kidney Kamp after my daughter got sick.  We had been trying to do Peritoneal Dialysis on her for 4 months at this point, and it was not working.  It was at this camp that we finally ended all of the attempts at PD(peritoneal Dialysis) and went exclusively to Hemo Dialysis in the clinic.  She had been doing Hemo during those 4 months as well.

This conference, actually more of a symposium on dealing with kidney disease had a lady come in and have the parents write about their feelings.  Good for me, I wrote 2 pretty good poems that day.  I wil feature the other one another week.

Click on -more- to read the poem!

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