 Update - Thursday, November 13, 2008 5:08 PM
Journal
November 13, 2008 10:00pm
Since last update we’ve been awaiting results of Madison’s metabolic exercise test. The Pulmonary clinic at Duke has been understaffed due to some illnesses and medical emergencies with family members of one of the Dr’s in particular. That doctor specifically being the same one that Madi is seen by.
At this point I actually do have a copy of her results but still have several unanswered questions surrounding them. I am a little frustrated with Duke and they are probably a little frustrated with me.
What happened was someone (not a doctor) called me and relayed a message to me that one of the nurse practitioners had looked at Madi’s results and said that she didn’t need to come back. So , I said okay, I’d like you to fax me the results with your number so in case I have questions once I review them, I can call back. I said that knowing that we were told during her test that on the pulmonary side of things some of her results post exercise were “clinically significant”.
So I get the results and there were three things I noticed on the results. First, Madison’s extensive history was not listed on the report. There was no mention of the fact that she is in remission from Leukemia, or mention of the fact that she has four inoperable obstructed veins. Next, on the results it said that the test was considered complete because her heart rate had reached 85% of the expectation. However, it also said the test was stopped prematurely because of fatigue, dizziness, and leg discomfort. Madison did have those feelings but I thought we were done with the test. I didn’t realize that they had stopped it prematurely. Thirdly it sited that Madison had a 16% drop in her mid-flow airway post exercise. This is what was specifically told to us is “clinically significant”.
So after reading all this I felt perturbed to put it mildly that this Nurse Practitioner said everything is fine. I have e-mailed a list of questions that I have asked that the doctor address when he returns from his family emergency. I am now waiting for them to send me a copy of her Pulmonary Function test that was done on October 7th. The results of that test were the reason the Metabolic Exercise Test was ordered. Duke assured me that they would fax them to me today but that didn’t happen. They apologized for them not being up on the patient portal that I look at but mentioned that some other Dr. had not signed them yet. I find this frustrating because the test was done a month and half ago. Someone needs to get it together!
The reason I say that they aren’t real happy with me is because after I reviewed Madi’s results, I called back and told them that the response they gave was a cop out and one that would have never been given had the person that made the statements taken the time to know Madi’s history before speaking. Might have been a little harsh but true!
Whether they are concerned or not we are concerned that the test was stopped because of dizziness and fatigue. From what I’ve read thus far, that should cause concern and the test should be stopped if that occurs. We want to know if the “clinically significant” drop in her airflow post exercise could make her a higher risk for Stroke or Heart Attack in light of the blockages she has. We also want to know whether or not they think that this is the culprit of the headaches and fatigue. We further need to know if we should have her refrain from any particular activities that could stress her body.
On another point, when the doctor ordered this test, he specifically told us that this test would measure the gases that she puts off through breathing through her mouth. He said that they would be able to know a lot with that data. Well, guess what? They didn’t do that part of the test. They said that it would be too hard for her to walk on the treadmill and breathe into the mouthpiece. I agreed. Since then though I’ve check around with other top rated Children’s Clinics that do this and they have a hat that the child wears and is strapped on and it is no problem at all for the child to breathe into the mouthpiece.
So here’s what I’ve decided. I liked the doctor she saw. I am going to wait and hear his thoughts and from there I will decide whether or not to have her records sent out to another facility. There are three that I’m looking into The Mayo Clinic, John Hopkins and one in NY.
I am thankful for Duke and still believe that had it not been for God’s grace and her HEMOC Dr’s she may not have been with us today. While I am thankful, I am growing more and more disenchanted with Duke as I experience other specialties outside of HEMOC. This is now the third bad experience we’ve had in the last twelve months. The first occurred with Neurology when they pigeon holed Madi and proclaimed she had extensive nerve damage. Then I questioned them, only to have more tests run that determined that she had NO NERVE DAMAGE. Now we go to a Neurologist outside of Duke. The second occurrence was this summer when I went back through Madi’s records to find out that they knew about her blocked veins FOUR YEARS AGO and never said anything about them! We learned about those veins for the first time in April of this year. Now this. So I believe I have a right to have our questions answered and if that make me a witch, please pass me my broom, but I will get some answers!
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