Still no results...UGH!!

I haven't wanted to post lately cause I've been in a little upset. I would sit down and start writing and realize I am being so negative so I just delete the message and walk away. Now that I'm not as angry I'll let you guys know whats been going on.

As you can tell from the title of this post, we still don't have the results from the bronchoscopy and CT's. I called the pulmonologists office last Wednesday to see if the results were in. I got no call so I called back on Thursday. I told the nurse (who is really nice) that I wanted to talk with someone about the test results.

Okay....here's the thing, we have yet to have a pulmonary consult with any of these docs. The pulmonologist that we saw when Arianna was in the hospital is the one that told us to have these tests done when she recovered. If you don't recall we had the pulmo consult scheduled for April 8th, which I complained about because it was 2 months after Arianna was discharged from the hospital and I thought that was ridiculous to have to wait that long to see someone for a consult. So awhile back I called and asked to talk with Dr. Brown, who is a diferent pulmonologist, but the one we were going to do our follow up with. I have yet to speak with this doctor which makes me a little frustrated. The nurses were the ones who spoke with him and asked if we should schedule the bronch and CT before our appt on April 8th. Dr. Brown agreed and went ahead and had us scheduled for April 8th, which was the day of our initial appointment. We had to canel that appointment but they said it wouldn't matter cause when we see Dr. Brown the day of her test he will make sure to schedule us for a follow up.

Are you still with me? :)

So...we get to the hospital for her tests and there was a different pulmo there to do her bronch, but we were happy cause she is married to our immunologist and was able to coordinate Arianna's labs that were recently lost. Plus I felt better having a woman perform this test anyways. She talked to us after the broch and tells us what she saw and says she will call me that Friday or the beginning of the following week. I asked if I needed to schedule a follow up and she said no, that she needed to see what the bronch results were to determine the next step. So Wednesday rolls around and nothing. So I call and leave a message for someone to call back. Thursday comes and still nothing so I call and finally get Addy on the phone, who is a wonderful nurse by the way. (We've only talked on the phone but she is great!) I explain to her that I haven't heard back from anyone and we are literally keeping Arianna isolated because we don't want to expose her to anything until we get the results. It's the logical thing to do...right?!? We've kept her isolated for these tests why would we stop until we find out the results. I tell her that I am the kind of mom that has ALL my daughters records and since I didn't hear back from the pulmo I went ahead and got the results myself. That normally wakes people up a bit. She explained that Dr. Daines, the pulmo who did the bronch, was out till Monday but Dr. Brown (the doctor we were originally suppose to see) was in and would give the message to him. I told her I was a little confused because on the CT scan it clearly states "normal thymic tissue seen" WHAT!!! She has a thymus! Dr. Copeland, Arianna's surgeon, clearly stated to us that he did not see any thymus went they opened her chest, which confirmed the DiGeorge diagnosis. I do recall our initially immunologist stating you can have thymic tissue in other areas of the body but they aren't as large as the actual organ and don't produce as many T-cells. But in the CT scan it clearly states the thymic tissue is in the anterior mediastinum, which means it would be right in front of her heart...HELLO - don't you think the surgeon would have seen this?!?! I don't know, so my mind is swirling and I'm beginning to wonder what is really going on inside my daughters little body. I'll be really curious to get the immunolgy results back this week.

And the second thing that just ticks me off is the medical records states she has a history of recurrent pneumonias...WHAT?!?! She has NEVER been diagnosed with pneumonia. So who is saying she has. I have a feeling it's the pulmonoglist, who we've never seen, because she has never had this on any medical record before. Well except for the initialy ER visit when she was in respiratory distress but that changed after the pulmo saw her. I may not be a doctor but I know that our medical records are vital in our medical treatment. If someone writes a wrong diagnosis, like the pneumonia in Arianna's case, then later she has more respiratory problems, the docs will pull her medical records and see that she had pneumonia before and probably assume this is whats going on. What if there is something else going on inside her little lungs and because one idiot decided to say the wrong thing, it gets overlooked. I explained to the nurse I left the message with, that I just want a doctor to take care of my daughter and make sure she is okay. She didn't have these test done for no reason.

See...now you know why I haven't posted in the past few days. I do feel better getting that out of my head though. For those that read that and have absolutely no idea what I meant, I'm sorry.

Now I think Arianna might have an ear infection so we're going in tomorrow to the pediatrician. She is pulling at her ear and been very irritable. If I don't keep up the motrin she is miserable. You think I would be happy to be seeing our ped but we actually will be seeing someone else. Our ped is only there on Wednesdays and Fridays, another reason why I really want to switch offices. I think I might look into that after we move.

Then I have my own cardiology appointment tomorrow afternoon. It's nothing major but I have this wonderful friend who told me I have to get it checked out because if I don't go, she'll come pick me up and make me go. Gotta love those friends that actually care! :)

Wow...just realized I typed quit a bit. For those that made it through my mess of thoughts...I aplaud you! LOL! Hopefully I will have some good news to share with you all tomorrow! Wishful thinking....