Twists & Turns

Where does it stop!

This is how my day went:

1. Leave 2 messages for the immunology nurse.

2. Call Lab Corp and speak to the same manager I spoke with last time. She tells me she'll look into it and call me back.

3. Get a call back from immunology nurse and this is what she says: She is sorry that no one in the office realized it was the labs from last year, however, the immunologist says to still get the MMR vaccine. She goes on to explain that once these labs are checked the levels never change and since Arianna had a moderate response last time, she is fine to get the MMR. I tell her I am not satisfied with this answer and demand to know more information before giving this vaccine. I ask her if this test doesn't change then WHY would he have us do it again. She said, "Well maybe he didn't know she had them done." This is when I lost it. We have met him before and he has the labs in her chart. The only way he wouldn't know was if he didn't look at her chart and if that is the case, then I don't want him taking care of my daughter. I was PISSED!!! I told her I am at the point of taking my daughter out of town to make sure we are getting proper care. (Kathy...I was just talking to Robert today about going to CHOP.) She asked me what I want her to do and I said...nothing. We had an appointment to see the pediatrician this afternoon and I wanted to talk with her first before doing anything.

4. I talk to Robert about the possibility of going to Children's Hospital of Philadelphia (CHOP) because they specialize in 22q Deletion.

5. I decide to call our previous immunologist to see if he would talk to me about our current situation and give us his advice. (It's a long shot but I felt I needed to try) I look at some old labs in my charts and see a fax that he had sent to Lab Corp last year. I called the number, thinking it was his office, and to my surprise Dr. Lahood answers the phone. I quickly realize this is his cell phone I just called. I explain who I am and apologize for calling on his cell but this was a number I had in my charts. I went over everything with him and told him I really value his opinion. He agreed with everything our immunologist said so I felt alot better about getting the MMR today. He tells me to call him any time if I have questions. What a nice man! You may be wondering why I left him...and so am I. (But honestly this immunologist doesn't practice at the hospital we take Arianna to. And our immunologist now is supposedly one of the best...could of fooled me.

6. So I'm on the way to the pediatrician appointment and I get a call back from Lab Corp. Guess what...they found the CORRECT labs that were done in May of 2008. I ask her to fax them to the pediatricians office since we were on are there.

5. We get there and there is no fax.

6. We talk to the pediatrician who is just confused as to why we are having such a hard time with the immunologist. She asked me, "What did you do so wrong in your life to deserve this?" Joking of course, but now I'm beginning to wonder myself. We go over EVERYTHING and she told me she just doesn't feel comfortable giving Arianna the MMR today. I ask her about doing the shots separate so she is looking into that for me. We then talk about the pulmonary appointment she is scheduling for us and it looks like we are going to try for next Thursday. She took the liberty of printing our the emails that have been done between herself and the pulmo. I just LOVE this doc! Last week she asked us to email her a list of questions, which she forwarded to the pulmo to read before our appointment. One of our questions was if we needed to have a pulmonary and cardiology consult together, just because the heart and lungs work so closely together. The cardiologist said he wouldn't mind doing this a few months back. The pulmo replied saying he thinks that would be a great idea. So we are having the cardiologist, pulmonologist, pediatrician, and myself at this meeting next week. So hopefully we can get some answers. Now only if we could find a good immunologist. Highly unlikely :(

7. Next our pediatrician takes a listen to Arianna and comments on her murmur. I ask if I could take a listen with the stethoscope. She said I should listen a normal heart first to hear the difference..since I have a murmur I listen to our pedi's heart then Arianna. Wow...what a difference that is. It's weird because it's a different type of murmur than before her surgery...of course thats because the VSD is patched, but it still brought back some bad memories. Right before Arianna's OHS her murmur was so loud I didn't have to put my ear to her chest to hear it and she sounded like a washing machine. It breaks my heart that my baby doesn't have a normal heart but I'm just so thankful that she is doing well and thriving. That reminds me...are you ready...she weighs 19 pounds 8 ozs!!! I'm so proud of my baby girl. I think we'll have a celebration when she hits the big 2-0 mark!!!

7. So the pedi goes to check the fax and still nothing. UGH! I call Lab Corp and after waiting for 5 minutes I get disconnected. I call back and no answer. I leave a message for them to re fax it and we had to leave the peds office before talking to the pediatrician again (she had to step into another appointment since I was just on the phone and she had patients waiting)

8. We get to my Nana's to check on her and I get a call from the pedi. She received the fax...everything looks within range from what she can tell. There was one thing that was low but she said that is normal...I'll have to find out when I get my copy. She says she feels better having these results and is going to look into the separate vaccines and get back with me. I asked her to send me a copy in the mail which I'll probably get next Tuesday. Once I have the results I'll put a call into the immunologist and see what he thinks.

9. We then had a wonderful evening at my Nana's and we're just so thankful she is doing so well.

10. We drove home, Arianna feel asleep in the car, but woke up after getting home, and the last time I checked Robert was holding her trying to get her to sleep.

I'm done...Ta Da!!!

I know I could of summarized that up better but I guess I'm the technical type of person and like to spell it out for everyone.

Now I am just planning on enjoying my weekend. Tomorrow night I am going to a Ballet with my mom, dad, and sister. It's our mothers day present. I was in ballet as a child (only for one year but LOVED it). I have always wanted to see a real ballet and tomorrow I will! Plus I could really use a break from all this doctor stuff. So tomorrow night it will be Daddy Night for Arianna. They will have a blast as always. I still have a hard time leaving her though. It's not very often I do that.

I want to wish all you mothers a Happy Mother's Day! I plan on getting some more pictures on here soon. I'm still unpacking and been really busy with the support group. Love you all!