January 30, 2015

Post-op Stent Exchange

Exchange successful!  They got in a new bigger stent hoping an increase in drainage could result in increased kidney function.  The doctor did say they had the same degree of difficulty as last time though.  But they got it!  So no nephrostomy tube. However, Clayton is going home with a catheter for a few days.  Just like last time they irritate his poor man parts so much doing this that it swells to the point he can't pee without a catheter.  Nothing we can really do to avoid that.  Thankfully, this time they sent us home with a catheter.  Last time we had to go back to ER the next day and traumatize him with getting a catheter while awake...through his already severely irritated man parts.  So we're doing better than last time.  Should make for a super fun weekend of catheter watching.
As for our future...as frustrating as it is for folks to hear, we just don't know.  Per the doctors today, the best case scenario would involve continuing to do stent exchanges once or twice a year for another two years until he is 5 years with no evidence of disease (cancer) and then deciding if his kidney is in good enough condition for a reconstructive surgery to his ureter.  They would only do that if they felt such a major surgery would buy him a few more years with his kidney.  If they did not feel they could get that kind of reward from that type of major surgery, they would not do it and instead make do until it was time for transplant.  Worst case scenario would be that he needs a transplant within the next two years.  The doctors have zero doubt he WILL need a transplant.  They just don't know if it will be in three months, three years or thirteen years.  In December, his kidney started acting up to the point they thought it might be within the next six months.  Then his kidney responded beautifully to the changes we made and everyone started breathing easier.  Just waiting, never knowing what it was going to do. Then, this past Monday, his creatinine had risen again, but his blood pressure still looked good.  So the doctors are keeping an eye on things and we continue to wait.  They don't know what will happen or when and neither do we.  What happens next is entirely up to Clayton's kidney.  It will fail as fast or slow as it sees fit and we are just along for the ride.
So as frustrating as it might be for folks to hear, "I don't know", just imagine what it's like to be me or George.  We are just stuck waiting on our kiddo's body to fail him.  One of the most miserable and mentally exhausting things ever.
All of that said, I get a really GREAT feeling about the Orlando doctor.  Some people you meet and you get very distinctive feelings one way or the other about them.  I was really struck by how much I liked this urologist.  He is very different from our urologist here.  Our urologist here is a self proclaimed worry-wart.  Our new Orlando urologist is very calm, cool and collected to say the least.  And while I really like them both, I get the sense that the Orlando urologist will really give us a better sense of peace of mind with where we are and where we are going. I know first hand worry-warts tend to think all over the place, so I think this new urologist is the piece of the puzzle we didn't know we needed. 
Now we just wait and see what Clayton's kidney decides to do.  Meanwhile George and I will do more research on transplant centers to be sure we are making the right choice.  And when it seems a transplant is on the horizon, we will see if I'm a match first and foremost and then go from there.
Anyhow, Clayton is doing ok.  We are home now and while he is VERY put off by the catheter, we are home and he is ok.  Trying not to move too much.  Poor bug keeps pointing to the medical drawer trying to tell me to take it out!  That's his way of telling me to get scissors or tape or whatever I need to fix his problem.  :)

Pre-op Stent Exchange

The little bug went back around 8:45.  Smooth morning.  We got to meet our Orlando doctor and now we are waiting...

Still don't know if stent exchange will be successful or if we will be staying the night.  Could go home with catheter or could go home with nephrostomy tube.  Unfortunately, I get to be surprised.

January 29, 2015


Checked in with doctor Monday and labs revealed that Clayton's creatinine is again rising.  However, his blood pressure is looking good this time.  That's a good sign.  We are moving forward with procedure on Friday during which the urologist here from Nemours Orlando will make his own assessment of Clayton's kidney health and hopefully help us figure out where we go from here and maybe when.  Very anxious right now awaiting everything.  Prayers please.

Macy loves her Clayton!

January 27, 2015

The Real Risk

So the vaccine topic is as hot as ever right now.  So I wanted to clarify.  I am not pro vaccine or anti vaccine.  And if I had a healthy child I have no idea what I would do or how I would feel.  But I don't.  I have Clayton.  The kid with crazy. crappy. luck.  I feel like his medical history combined with his tendency to be ultra sensitive to things justifies my concerns.  Which makes it particularly frustrating if doctors won't talk to you about stuff.  I did however, have a brief chat with his oncologist at Nemours about it yesterday.  He brought it up.  He is clearly pro vaccine and I am clearly well me, so we did tread lightly I feel in order to not have a heated discussion about the topic.  But he sees my desire to avoid risk both by getting what is necessary and avoiding what is not.  To that end he did say that polio probably was not necessary if we weren't traveling out of the country.  He also mentioned the Heppatitis vaccines were maybe not necessary for my approach.  But he strongly recommended the whooping cough vaccine, pneumococcal pneumonia vaccine and a vaccine for a bacterial version of flu (not the same as seasonal flu).  So though I could have talked with him about it more, I didn't try to yesterday because as my mother so eloquently put it, I was in a "bitchy" mood and felt it wasn't the best time to tour the sensitive subject.
The main point here is this.  I am not concerned Clayton is going to get autism from a vaccine...um, hello?  He already is autistic...I am concerned about his seemingly fragile body and the side effects often seen on the info packets the doctors hand out after they give your kid their shots.  Those are very real documented side effects.  And maybe they are rare, but so is everything about Clayton.  If you haven't noticed, we don't have the best of luck.  Especially my sweet little bug.  So I feel that a proceed with extreme caution is in order.  While it seems the medical community at large is all, "load our kids up, one size fits all".  Not my style.  I don't want him to contract these illnesses, nor do I want him suffering these rare side effects.  It's a tough decision for some parents and one I think doctors should be willing to discuss.  
I'll link an interesting article on the subject below if your interested.


January 12, 2015


    BWe are waiting on the kidney doctors to decide for sure what our next moves are.  Since Christmas time, Clayton's kidney has responded so well to our changes that the doctors have backed off of doing a nephrostomy tube for now and are instead going to try and go forward with the stent replacement at the end of the month as we had previously planned.  As it is right now, the urologist from Nemours Orlando (that would do transplant) will be coming in at the end of the month and will take part in the stent replacement to get a feel for Clayton's kidney and to help be a part of the decision making process with our doctors here.  Hopefully more answers will come after that.
We were suppose to have been in Dallas last week, but since Clayton was getting over flu, that trip has been delayed.  No anesthesia so soon after flu.  It's for a check up with ortho and dental surgery.
Otherwise Clayton is over flu and thank God did not have it too bad.  Now we are trying to stay healthy for procedure at end of month.  We can't reschedule that with visit from Nemours Orlando doctor.  So if your sick or think your sick for the sake of my sanity please keep your distance these next few weeks...I mean that with lots of love.

Meanwhile, Clayton has been spunky as ever!  Sweet bug!

My neighbors have been putting out this snowman since I was a kid.  And Clayton loves Frosty!

LOVING his new rocks.  We go out there many times every day!

January 7, 2015

Strong Feelings

I was going to share my personal feelings/vaccine attack plan for C and let it be.  THEN I came across an article about vaccines from a pediatrician's perspective.  Fire lit.  So let me break this down...as simply as possible.  You can read the article HERE ( http://www.thedailybeast.com/articles/2014/01/30/the-real-reason-pediatricians-want-you-to-vaccinate-your-kids.html ) and then you can read my thoughts on it if you like and see how you feel.

A.   Because I reserve my right to make choices for my family I have to respect a doctor's right to make choices regarding their private practice.  Which is why we simply moved elsewhere and let it be.  That said, this is my blog and I felt that article was off base, so I'm throwing my two cents out there for those interested.  And if your not interested, don't read.  Seriously stop reading.

B.  As a parent I have no idea what to think about vaccines.  So I rely on doctors and science and parents to help me figure it out.  Unfortunately none of those sources seem to agree about the issue.  No one knows their kids and how they react to things better than their parents, but yes some parents are a little "over the top" and/or biased.  And professionals of the medical community are suppose to be able to tell us what's best, but leave us scratching our heads when they cannot definitively draw conclusions about the safety of vaccines.  And let's face it, some medical professionals can be just as biased as some parents.  As a parent what/who do you trust?

C.  I expect that as my child's caregiver, a relationship with my child's pediatrician should include any conversation about vaccines that I would like.  Having a relationship with a doctor entails having conversations with them to guide you in the direction necessary for your child's best health.  That's hard to do if doctors avoid conversations about vaccines.

D.  Having a relationship with a pediatrician and trusting him/her should not mean you have to agree with everything they say without question.  This "my way or the highway" attitude exhibited in the article sounds like doctors acting like the toddlers they are treating.  I have relationships with lots of people and professionals and not one of them do I agree with EVERTHING they believe.  Having a relationship with anyone is about finding common ground and mutual understanding.  Parents are not meant to be submissive when it comes to their child's care and if that's the direction our culture is headed, we have problems.  It is completely normal to respect and trust someone without leaping every time they do.

So who is really misguided, the pediatricians who won't address the topic with their patients? Or the parents trying to make sense of a slew of conflicting information?  I mean really, doctors can think I am as misguided as they want for carefully considering various details of my son's care, but I am simply a parent who both respects the experiences of other parents and the training of doctors and is trying to navigate a world where none of them agree as best I can to make the best decisions for my kid.  
As for why I put so much stock in the experiences of other parents?  Parents know things medical school can't teach.  And every child is different.  For example, when Clayton gets a dose of zofran through an IV, he throws up within a minute.  He hasn't always done that, but for some reason half way through his chemo, he started doing that.  George and I watched the exact same reaction through the rest of chemo, radiation, antibody therapy and various other occasions even as recently as his vomiting from his head injury and receiving a dose in the ER.  So in varying situations over the course of years George, myself and Clayton's grandparents all witnessed the EXACT same reaction, yet few medical professionals believe us.  Seriously.  They always have an excuse as to why they think he vomited.  But Clayton's caregivers know different.  It's situations like these, medical professionals can sometimes dismiss as a parent imagining something or being crazy all because science can't/hasn't already explained this event.  Or because it isn't the "normal".  We have experienced multiple situations like this through Clayton's many medical adventures and we have heard tons and tons of similar stories from many other parents.  All of this is why when a parent says something like her kid began havig seizures for the first time ever shortly after receiving a vaccine, I stop and think.  And at the end of the day I don't know and I never will for sure whether that vaccine is to blame, but what those stories should teach all of us is that we should be paying close attention to what we are giving our children.  Contrary to what some folks might like us to think, there is nothing wrong with asking questions and it is our right to know what we are considering giving our kids.  All I can do is what I feel is safest for my kid and what avoids making our life more complicated.  

So where do I stand?  Clayton will get some vaccines, but not all.  I reserve the right to choose which vaccines I think are relevant for him and weigh that information with the controversial/potential risks.  I haven't figured it all out yet, but I know my approach and would love to have an open minded doctor to discuss anything I'm conflicted about.  Since Clayton's immunity test showed he could stand to start from square one with vaccines, I need to finish my research.

As of now, based on the CDCs information, I WILL NOT be giving him the polio vaccine.  I don't think it is relevant today.  If something changes, I will revisit this vaccine and determine what is best.  It is not lost on me that our progress with polio is made possible because of vaccines.  I think that is wonderful!  And if polio even looks as though it may become and issue in North America again, we will certainly do our part and give Clayton the vaccine and check if we need them ourselves.  God willing, that won't be necessary.  Unless that time comes, no polio vaccine.

However, I WILL give him the pertusis/whooping cough vaccine.  He has a sensitive respiratory system and this is something that is relevant today and we do see outbreaks with throughout our country, therefore, I think it is worth any potential risks if it saves him the distress of coming down with whooping cough and us hospital time.

And no Clayton didn't get the flu vaccine and he did get the flu, but we did the responsible thing and did not go anywhere or endanger anyone by spreading germs.  Other than the ER visit, we stayed home the whole time.  If Clayton is going to get a flu vaccine, it better have a much better prevention rate than this year's vaccine did.  With or without the vaccine this year probably would not have mattered.  The ER we were in said many of their patients with flu had had the vaccine.

Anyhow, I'm still researching other vaccines, but I think you can see where I stand from this.  I'm all about necessary risk and completely against unnecessary risk.  Obviously what is necessary is a matter of opinion for many.

Peace to everyone in making difficult decisions regarding their family's health and what options are the best fit for them and their circumstances. :). I am clearly not a doctor and my opinions are based on my research and experiences and are what is right for my family.  Whether you are for or against vaccines, wishing everyone good health!

Life isn't black and white and the quicker folks learn that the better off our world will be.

FYI: I have no idea why the font keeps changing and I can't seem to fix it!