My Inside Voice

Life is a constant struggle with me, between what I say and do and what I want to say and do!

Spencer has been in Africa for nearly 5 days now!  He tries to message us once a day, either early in the morning or late at night- Ghana time.  With every message, he says, "My mind is blown!"  I can tell that this will probably not be the last time he goes to Africa.  He is humbled in a very powerful way.  He has sent us a lot of pictures but most of them, he has asked me not to post yet because they are of the two young men who are boxing for the National title next week.  Spencer's portraits are so beautiful, they leave me speechless.  Without a doubt, he has found his passion in life.  When I look at his pictures, it feels surreal to me...I can't believe he is there.

He was able to attend church today (Sunday).  It was held on a dirt patch with just an  old roof to shade the sun from above, no walls. After church, they were headed down to the ocean where the young boys they are documenting, were swimming laps against the waves as part of their training.

Here are some pictures I have permission to share.

This is the grandfather of one of the boys.  What a handsome man.  It's interesting that these boys are friends.  They are training together yet, they will be fighting each other.  The winner of this fight will allow on of the boys to provide for their family, so unlike in this country...the title is not for notoriety, or gain, it is a fight for survival.  One will lose and that loss will be greater than most of us will ever know.

 This picture, is one I had to bite my tongue and keep my inside voice, inside, where it belongs.   These children are touching Spencer's beard and examining the freckles on his arms.  They rarely see red heads, beards, freckles or digital cameras so he's a hot commodity there.   I love that Spencer has immersed himself in the experience but I can't lie, this picture makes me crawl with anxiety...all those little hands on my immune compromised son's face and arms.    I do love this picture all the same. It is tender and speaks volumes to me of how much Spencer loves it there.

In other news.  We have been the rounds with Sam this week.  It became apparent in the initial testing that happened this week that his kidneys were taking a hit.  Then the tests came back with elevated liver numbers and an elevated white count.  Never, in Sam's existence has his count been 5 or higher and it was 5 this week.  I called the clinic to ask what they had planned to do with this and suggested that we should start antibiotics since he was clearly fighting something but the PA disagreed and that message came to me via a nurse.  

I didn't like that answer so I asked if she could have the doctor review everything and reminded them again that Sam is immune compromised and these numbers did indicate an infection.  It took two days for me to hear back and the nurse said, "The doctor isn't concerned.  His immune system is probably just getting better. His count was this high last year, the end of April, first of May."  

I agreed with her that they were that high but that was when he was having identical problems to what we are experiencing now.   She held her ground that the doctor wasn't concerned. For the third time, I asked about his urine samples and again, she said, "They were fine. "

So, Saturday, while I was in Utah, a different nurse called me from the clinic to tell me that Sam had bacteria in his urine.  Huh??  I was so irritated.  We are now more than a month out since we started down this road and they've had all week and three separate phone calls to give me this information.  I spared her my inside voice and politely asked if the doctor could please call in a prescription since he clearly had an infection and all his counts reflected that.   She said that she didn't think that would be possible since the Urologist in Utah was the one to order the tests.  

I don't really care who ordered the tests, I felt like they had a responsibility to start antibiotics immediately since it could be another 2 or 3 days before anyone from Utah gets the faxed results and calls me back. 

I don't want to be angry because I like this clinic, the nurses and the doctors we see but I'm so confused how this became such a struggle.  They know my kids catch every little thing.  They have been instructed by our Immunologist that we treat each infection or sign of infection aggressively yet, here we are and again, I had to beg and plead for Sam to get any kind of treatment.  I don't act like I know it all, but I have a pretty good handle on when my kids are going down and I have lived with their blood counts and know when something isn't right.  I just wish they would respect that. 

We finally did get the clinic to call in a prescription but because I was in Utah on Saturday, I had to pick it up today.  When I got to the pharmacy, they had put Sam's address as being from Denton, Texas.  We have never been to Texas.  It was a medical error that took nearly two hours to sort out. 

It's been an exhausting series of mistakes and missteps.  Ugh. 

Hopefully, this will help him to finally start feeling better!  

This week is going to be a busy one! I was offered a temporary job at a flower shop this week to help crank out some Valentine bouquets so I will be working out of town every day this week!  It will be a fun change of  pace but I suspect it will be exhausting as I try to keep up on my regular work as well. 

Such is life.  I had a sad conversation with my accountant which I will save for another day, so I feel like I have no choice but to take on  more work.