Monday, May 20, 2013


Last week I emailed Jack's neurologist to give her an update on Jack.  I let her know that Jack was doing really well despite the presence of the 4+ cm kidney stone occupying half the space in his right kidney.  I also told her that Jack was having some blood work done and pointed out to her that I knew she'd be thinking "Why are you having blood work done if there aren't any obvious issues going on with Jack?".

Her suggestion: "I am thinking you get the blood draw and not ask the answer."

I could never do that.  Not only do I need to know ALL the information when it comes to Jack, I need to know it now!  Needless to say, I was not happy when I hadn't received a call from the nephrologist by Friday with the results of the blood draw on Wednesday.  When I called the office on Friday, I was told that the report was printed and in the nephrologist's inbox, but she was seeing patients all day.  I expected to receive a phone call at the end of the day from the nephrologist.  No call was received.

I called the office first thing this morning to let them know that I wanted the results of the blood work TODAY.  I was informed that Jack's nephrologist is out of the office for the week attending a conference. (Which makes her not calling me on Friday more than slightly annoying.)  Fortunately, I've established a good rapport with the nephrologist's nurse, (as tough a persona as I like to portray, I'm really quite reasonable and personable when dealing with most medical professionals.  Being an ass won't get you very far) and he told me that there was nothing concerning with any of the results. I was primarily interested in Jack's potassium level, which he indicated is "consistent" with what it has been. Not entirely helpful information.  When I asked him what the nephrologist was looking for with the blood test, his response was that she wasn't looking for anything in particular because "she wouldn't do anything with the information".  So, why did she even order the blood work in the first place?!  (To appease me, no doubt.) Based on our continued discussion, Jack's nephrologist has clearly documented in his chart what I told her back in November - that we are taking a palliative care approach with Jack.  Based on this, the nurse said that the nephrologist's main concern is making sure Jack is comfortable, not trying to figure out the "why" of the significantly abnormal numbers from his previous 24-hr urine analysis.

Isn't this what I want?  Back in November, after the year from hell, I didn't want information that would lead to pursuing more testing.  Now that Jack is doing well, the decision to not look for answers - or, more importantly, solutions, isn't as straight forward.  My question is, what would Jack's nephrologist be doing differently if we weren't taking the palliative care approach?

I feel so conflicted.  It's easy to say "enough" when Jack is feeling run down and his body needs to rest.  However, when Jack is feeling better and doing so well, the decision to do nothing - when you know that things inside his body aren't as they should be - doesn't come as easy.  Not gathering information and looking for answers goes against my very nature.  I'm an information gatherer, need to know kind of person. Those of you who know me well can understand how conflicted I feel. Nevertheless, I'm trying to keep my focus on my heart and not my head.  I know in my heart that it's not in Jack's best interest to dig deeper.  I need to just let things be.  It's a constant struggle for me to shut off my mind and follow my heart.

I shared with Jack's neurologist that I feel like I'm in purgatory these days.  In response to her suggestion that I not ask the results of Jack's blood work, I told her "that would take me from purgatory to hell."  

Compared to everything we went through last year, purgatory beats hell any day.

Just trying to take it one day at a time.


A few pictures from this weekend

Last Spring swim meet

Eric isn't the fastest, but he gives it his all and for a kid who was terrified of the water just two years ago, he is doing amazingly well.  He swims 3x a week with his swim club and he rarely complains about having to go to swimming. It's a great sport for him and definitely helps burn a lot of his pent up energy!

I was pleasantly surprised to find Eric hanging out in bed with Jack on Sunday morning. It's interesting because Eric never talks to Jack, but he must feel a connection just by being near him.

You can really tell how small Jack is for a kid who is 14.  
Eric is 11 years old and he is so much bigger than Jack. 

We are dog-sitting my sister's dog, "Annie" until at least sometime next year.  My sister recently transferred to NYC for her job and her husband works near Los Angeles for his job (and they technically live in Phoenix). They didn't know what they were going to do with their dog, so we volunteered to keep her.  I'm not known for being an animal lover, but this dog is growing on me. She's got such an expressive face and I think she likes me - mostly, because I'm the only one who takes her out for walks on a regular basis.  I'm still trying to master the walking the dog and pushing the wheelchair thing.  



Monday, May 13, 2013

My Heart

(serenity garden at Ryan House)

Jack and I spent this last weekend at Ryan House.  The last time we were there was November and it was time for a return visit.  Although I have the option of leaving Jack at Ryan House, I prefer to stay with him because he is so unpredictable and I wouldn't be able to relax if I was away from him for too long.  I like Ryan House because it's a change of scenery not only for Jack, but for me as well.  I find most weekends to be rather depressing because I feel "stuck" at home.  When I'm at Ryan House, I don't worry about all the things I could or should be doing around the house, nor do I feel guilty or like I need to hurry back when I do get away for a few hours.  It truly is respite for me, even though I stay there with Jack. 

One of my favorite volunteers at Ryan House is Grandma Bev.  She formed a special bond with Jack from the very beginning and really enjoys her time with him.  She spent Saturday afternoon entertaining Jack and after she left, I found this card she had written and left in his room:

My heart smiled.  What a remarkable woman Grandma Bev is to look beyond the barriers of silence and technology to see Jack for who he is.  All of the staff and volunteers at Ryan House are incredibly special people, but Grandma Bev - well, she has my heart after sharing such precious words about my Jack.

I went back through my pictures of Jack's first time staying at Ryan House, over three years ago, and found pictures that captured those very events that Grandma Bev was referring to in her note

Grandma Bev reading to Jack (March 2010)

dancing with her favorite dance partner (March 2010)

In addition to being a respite facility, Ryan House is also a hospice facility for children.  This weekend there was a child who passed away at Ryan House.  Being in the house and seeing the grieving family was tough.  But, it was also the kick in the pants that I needed to get me out of my funk.  It made me appreciate the fact that Jack was able to leave Ryan House at the end of the weekend and he and I were both able to enjoy our time there.  Ours was a weekend of joy, not profound sadness like the other family.  It was a reminder that I need to just take one day at a time, appreciate the day and not look too far into the future or worry about what is looming on the horizon.  I didn't book a weekend at Ryan House with the intention of being enlightened. However, the message was conveyed and I'm going to do my best to take heed. 

We'll be making a trip to Phoenix Children's this week for lab work. I made sure they included in the order that the IV team is to be called because I don't want a repeat of the last blood draw where the blood hemolized and skewed the results because Jack was such a difficult draw.  I'm just hoping we aren't there all day waiting for the IV team to show up.  Send positive thoughts our way on Wednesday morning, okay?


Sunday, May 05, 2013

I Know I Need to Update the Blog

To all my friends who check the blog, I know an update is in order.  Fact is, if I was to update the blog right now, it would not be a very uplifting post.  I'm trying my best to appreciate the good moments and those who follow me on Facebook see that "Life is Good".  But, to be honest - the good moments are fleeting.  Jack is doing fine for the most part, but I'm struggling. My emotions are all over the board.  I'll just leave it at that for now.

Tomorrow I have Jack's IEP to transition him from junior high to high school.  Probably one of the reasons I'm feeling down right now.  There's something not right about having a son who is high school age and still wearing diapers.


Thanks for checking in.


Celebrating my birthday this weekend with the boys
(the girls joined us for dinner too, but they didn't stick around for the picture)