Tuesday, August 14, 2012

And You Wonder Why I Drink?

I don't like to whine.  But, I left the house at 7:45am this morning and finished up with all of Jack's appointments at 5:15pm and it's freaking 115 degrees outside.  So, if this sounds whiney, blame it on the heat.

We saw the nephrologist today.  I didn't have high expectations and I was not disappointed.  The doctor was nice enough, but I left the appointment without having any confidence in him and the likelihood that he will help us with the "why" and "how do we resolve the problem" of the kidney stones.

Let me just take you through my day - because if you are reading this, then you must be interested in the minute details of my day, right?

Our appointment with the nephrologist was at 9:30am. I managed to schedule the CT scan that the urologist ordered for 10:30am.  I was instructed by the radiology scheduler to go to radiology and get registered before our appointment with the nephrologist so that we would be good to go once we arrived. We got on the road early and thank God for the commuter lane, arrived at Phoenix Children's by 8:45am.  When I signed in at the front desk and told them we needed to register for a CT scan with radiology, she looked at her "list" and told me we weren't on the "fast track" registration and that I needed to start with admitting.  Not what I wanted to hear.  Not what I was willing to do.  I informed her that I was told to go to radiology and register and I was not going to go to admitting.  She didn't argue with me. It is never my intention to be obnoxious, but darnit! I don't have the time or the energy to mess around doing things that I shouldn't have to do and I was not going to waste 20 minutes sitting in admitting to then go to radiology, especially because they have all our insurance information from the  multiple times we've been to this hospital in the last 5 months!  We were able to get registered at radiology and then head over to a different building to see the nephrologist.

From the get go, it was clear that the nephrologist was not comfortable with Jack. I had received a copy of the lab report from Jack's urologist, so I knew what all his numbers were and thanks to PubMed, I had a list of questions and ideas of what I was hoping the nephrologist might want to investigate as far as what might be causing the high calcium oxalate and low citrate.  I went in with an open mind willing to hear whatever this physician had to say.  Problem is, he didn't have anything particularly enlightening to say.  He discussed the results of the 24-hour urine collection - which I already knew because I had a copy of the report.  He suggested it might be due to his diet - contrary to what Jack's urologist and pulmonologist both said - they said because he is on Pediasure, it is not a dietary issue.  It really isn't worth repeating the play-by-play of the appointment, but I will say that he mentioned that he could put him on a citrate supplement to address with low citrate in his urine (citrate is what helps to keep stones from forming), yet we left his office with no prescription for citrate.  I asked if he might want to do some blood work - which he agreed to (but why did I have to suggest it?) and then he checks a bunch of boxes on the lab form and asks me if there is anything else we might want to check.  I suggested checking his Vitamin D level based on my discussions with Jack's St. Louis neurologist last week and his response was "that's a good one, we were just talking about that last week." Who is the doctor here?!  Really, I have no doubt this doctor is well educated and knows his stuff, but for Jack - he is not the right guy.  We left with no information and no plan.  Maybe when he calls me after he gets the results of his lab work, he'll have a plan.  But, again, I'm not optimistic.

Next stop was radiology and the CT scan. We got right in, right out and it was uneventful.

After CT, it was off to the lab.  Maybe I'm expecting too much, but PCH just built a brand spanking new Children's Hospital and you'd think along with the new clinics, facilities and offices, they would have nice big signs that direct you to where you need to go.  We were told the lab was on the second floor next to the clinic suites.  We arrived on the second floor and there was no sign that said outpatient lab anywhere.  I asked at one of the clinics where the lab was and was told "next to the bathrooms".  Nice.  We went around the corner to the bathrooms and saw a door with a small sign next to it that said "blood draws".  Right! Of course, the outpatient lab should be a closed door next to the bathrooms with a tiny sign that makes reference to blood.

The lab tech asks me where are they usually able to get a good blood draw on Jack.  I tell her that it usually takes the IV team to get a blood draw, but the best place to look are his feet.  To which she informs me that she can't draw blood from his feet that only the IV team can and if they can't get blood and need the IV team, then we have to get an order from the doctor who ordered the blood draw to request the IV team.  ARE YOU KIDDING ME? This is a Children's Hospital, right?

I won't even expand on my thoughts about the whole blood draw thing because it wouldn't be nice.  Fortunately, they were able to get blood from Jack's hand.  It took forever for him to bleed enough to fill all the vials, but they got what they needed ... I hope.

It's now noon and we are finally done at PCH. After I pull into the driveway at home, I hear Kristi say, "we have a problem".  I look at Jack and he is pale/gray and looking quite out of it.  #$%@!  I tell Kristi we need to bag him.  I grab the ambu bag and Kristi grabs the suction machine.  After a few minutes, we "revive" Jack.  The way our van is set up, Kristi sits in a seat behind Jack, so she can't see him when we are driving.  Not a good set up, obviously.  We don't travel with the pulse-ox and it's never been a problem, but apparently, we need to keep a better eye on Jack when we are driving around town with him.

We were home a few hours and then back on the road for an appointment with the pulmonolgist - who we were supposed to see in May to follow-up on the change over to the new vent but never did see because we've been dealing with kidney stone issues and hospital admissions and I've already missed a ton of work so there really was no time for a follow-up appointment in my schedule.  But, I like our pulmonologist - he totally gets me and he is so good to Jack. Knowing that we had multiple appointments today, I just bit the bullet and decided to take the day off and fit the pulmonologist appointment in.  I brought him up to date on the kidney stone saga and my thoughts on the appointment with the nephrologist today. He was understanding and supportive and gave me some ideas and also gave me the name of another nephrologist in the group we might want to see. He also suggested that we might just want to wait and have this dealt with in St. Louis.  I told him the problem is that I know too much. His response was that I can't ever know too much, that I have to stay on top of things to be the best advocate for Jack.  Like I said, he totally gets it.

So that was my day in not-so-much-a-nutshell.  I'm frustrated.  I want answers and I want a resolution to the kidney stone saga.  Is that asking too much?  I'll wait to hear from the urologist regarding what the CT shows and then I'll forward all the information I have to the St. Louis urologist and depending on what he says, we'll have to make the decision as to whether this issue will be resolved in St. Louis or Phoenix.  It's a difficult decision because this appears to be a chronic, ongoing issue.  Not something that is really conducive to appointments with doctors 1500 miles away.

And, my friends, you wonder why I drink?


Justin and Victoria Nelson said...

I get it =)

ssouth said...

That is one frustrating day, made more unbearable by the fact that it isn't rare. All I can do is repeat that I'm sorry it's so hard and that the cross is so heavy. I'm glad Jack has you to show up for him and do all you can.

Sarah said...

So terribly frustrating. I can't believe you had to be Dr Ann at your own appt! He needs an Ann letter ASAP!! Hugs friend! Have a glass for me!