The good news is that I spent today furiously cleaning and making cookies to keep myself busy while waiting... The bad news is that we never received the call from the doctor at the Pediatric Hematology department with the girls' blood results.
Two and half months ago I called (after being referred by our pediatrician) Mount Sinai's pediatric hematology/ oncology department to set up an appointment. The purpose was to draw the girls' blood in order to determine the identity of an unknown variant in their blood. When babies are born they receive the PKU test. Most babies are born with FA red blood cells (fetal and adult) and by the time they are one, they only have the A red blood cells. The girls PKU came back as FAV (fetal, adult, and a variant). Our pediatrician recommended we go to a specialist, but not until they were at least one.
I find out that we apparently cannot just set up an appointment on referral, we have to have our doc send all the paperwork and ask for the appointment himself- and then the hospital will call us back to set up an appointment. I had our doc do all the necessary steps... 2 weeks go by. I call Mount Sinai... they said they received the paperwork and were just waiting for us to call... what?? Weren't they supposed to call? Anyway, we set up an appointment.
The appointment itself was four weeks ago.
So 4 weeks ago, we went to Mount Sinai; we were brought into the exam room (aka hospital room) and told how to work all the electronics and where the play room was with free snacks and refreshments. It felt like we were checking in or something! As it turned out, we used the play room, ate some snacks, and watched cartoons in the room.... as we were there for 3 hours. We arrived thinking we would be there maybe an hour at most, since all we were going to do was draw blood. We had an intern chat with us for 45 minutes. She asked us a lot of random questions and would take several minute breaks between each question and just watch (was it her personality that prompted her to do that? Or was it part of determining if there was something 'wrong'?- who knows...). Fortunately, hospitals are clean.. very clean so the little ladies were able to explore in the room throughout the wait. When the doc finally came it we had been there for 2.5 hours already. He explained that there are over 500 variants and there are only 5 groups to be concerned about. Since neither Dave nor I know if we have a variant (and one or both of us do), he explained that it could either mean something for girls (if both Dave and I have a variant), or not much (if one of us only has it)- but then it could mean something for their children. Or it could mean nothing for anyone... which of course is what we are hoping.
After we were done speaking with the doctor, he told us to call back in 2 weeks. They were sending their blood to the Mayo Clinic and they would know then. He leaves and then we are finally ready to tackle the actual blood-taking. It was not fun. I had taken measures to make sure that both girls were rested and fully hydrated before we went to the hospital, and of course it was now over 3 hours later.
We get home, I mark the calendar for 2 weeks from that day. The two weeks go by, albeit slowly. I call in the morning. They transfer me to the nurses line to leave a message. Its the afternoon, we have heard nothing. Dave calls. He talks to someone who tells him to call back in another 2 weeks....aaah!
I mark the calendar again. Two weeks go by, again, slowly. I call this morning. The receptionist remembers us-- oh you have the red-headed twins! Yes. Our results our in; the doctor wants to call and talk. I call Dave and let him know the results are in. I am nervous. Is it good or bad that the doctor wants to talk? Is it normally just a nurse? It's the afternoon, I have heard nothing. I call back. They said he was definitely going to call today (the second time they confirmed this).
It's 8:30PM, we have heard nothing. Out of any department in a hospital- one would think that a department that deals with your children and specializes in hematology, not to mention oncology, they would be a little sensitive to the fact that parents would like to be notified regarding results (good or bad)... especially if we are told they are in and we are going to be contacted on this day... AAAH!!
My first official blog vent.
I just have to remember the good news...
It was a sunny brisk Halloween today in Birdland (aka Oriole and Raven country). Our whole family woke up this morning with perfectly appropriate halloweeny goop streaming from our breathers. Despite the seasonal snuffles, we still enjoyed the day. We carved a mini- pumpkin and visited Dave at work so the girls could show off their new statuses as Princess Lucy Goopella and Princess Stella Snotella (thanks to Amy L. who passed the cute costumes down after her twin girls were done with them!). We also visited a couple of our neighbors and got some trick or treating in!
