Unscheduled Appointments

     I just never can get used to those calls from the doctors office when they say they want you to come in the next day for an appointment.  In this case, I get a message in MyChart from the Nurse Practitioner at the Nephrologist's office, saying that the doctor will see my son after playing a game of cat and mouse for about 2 weeks.  Needless to say, my frustration level is at about an 11 at this point.  I had been contacting LJ's doctor's office back and forth trying to figure out if he needed to be seen again before we go to Boston at the end of the month, and had heard no at first, then yes, then not this week, but next week, then we'll get back to you Wednesday afternoon.   Finally, I check my email at 4 o'clock on Wednesday to see, a message that was telling me I had a message in MyChart (the messaging center for my hospital) that said, bring him in tomorrow afternoon after his blood work. The blood work, which he is now getting every 3 days since being placed on this medication to hopefully help with the diarrhea issue, P. S, not much has changed.  At least his blood work has been OK.   Now, I am already on fire because, I forgot to mention, I had called Monday, key words being, I called to ask about the ultrasound from over a week ago at that point.  Here I am , thinking, no news is good news, as my mother would say, but I was wrong.  When I speak to the Nurse Practitioner again, I am told that there is a note in the computer saying that there was moderate hydronephrosis documented.  My immediate question was "Why was I not notified?", to which I got dead silence for some time.  I was then told that since Boston was his transplant hospital, they were waiting to hear back from them as far as what could be causing it, how bad it really is in comparison to previously, and so on.  Basically, in my eyes, it was a bunch of excuses.   I am freakin' out at this point because I don't really know what to think, so I wanted to get in to see the doctor to find out what was going on.  At least to know more than what I did, which was nothing at this point.

Always Smiling!! My baby at the doctor today


When we finally get to see the doctor, of course I have a million and one questions.  I was upset because I had to call myself to find out about the ultrasound first of all.  She said she called me, but when she didn't get me, she didn't leave a message because she didn't want to get me upset without being able to answer any questions I might have.  So you don't try back?  OK, Anyway, after all the apologizing, we got to the fact that she basically feels like she doesn't know enough about the ultrasound to give me much answers anyway, and I am still waiting to find out from Boston what they think about it.  This I won't know until we go there on the 25 of this month.  This is the stuff that gets me crazy.  How is it that I can have questions that go unanswered for so long?  Knowing that he has a kidney that we need to be attentive to, I feel like they drag things on too long, then it will just be like, Boom we need to do this, this and this Today! That's what I have always hated about about both of these hospitals.  Now she did tell me that it's not such an urgent issue as long as LJ is not peeing less, or anything extremely different, but being the mother that I am, and knowing how things do change as fast as they do, I am still nervous.  I have no choice but to wait though.  The thing is, when we get to Boston, I don't know how long they are going to want us to stay or anything, and I only planned to stay one day for his appointment.  Now that is travel, hotel, and nobody has told me anything about any other appointments.  So come Monday, I will have to be tracking everybody down to find out if I need to be pushing for a longer stay, and changing reservations.  It is never ending I swear.