Finally on to something

I'm going to warn you all, I'm in a very upsetting mood. This morning I took Arianna for her check up with the pediatrician. When we got there they weighed her and she was at 19 lbs 1 oz with all her clothes and diaper on...but at least she isn't loosing any weight! Then we go to the room to wait and already I can feel my blood boiling cause I didn't want to deal with another clueless doctor, then all of a sudden OUR pediatrician walked! I was SO releived and a little unprepared. I told her I thought Arianna might have an ear infection, which she looked and she doesn't..THANK GOD! Just a little bit of fluid but not enough to even treat. Then I told her we just had the bronch and CT's done and I had some questions. This is where it all begins...


I explained the entire story I posted about in yesterdays post and she looked in the chart to see if Arianna has ever been diagnosed with pneumonia. I knew she wouldnt find anything and she seemed a little concerned at this point. She didnt' understand why no one has called me back if they thought she had pneumonia in multiple areas of her lungs. I told her that is exactly what I was wondering. She walked out and went to go see if she could pull up the CT scan herself. A few minutes later she asked me to go in her office and she proceeded to show me the CT scan of Arianna's lungs. You can clearly see the upper lobes are non-affected and look normal. As you get to the mid-lower lobes you start to see white patches across the lungs, which get worse as you get lower. She explained this is all suppose to be black but in Arianna's case it is not. She told me she thinks she has pulmonary sequestration. I have never heard of this before so I provided a link that give you some information about it. The pediatrician has dealt with this issue before and told me the only treatment option is to removed the affected lung tissue. She isn't sure if they will want to do a biopsy or not. She told me this diagnosis isn't set in stone that she will contact the pulmo and discuss this together then give me a call.

So I was at my cardiology appointment and received a call back from the pediatrician. She said she spoke with the pulmonologist and asked if she reviewed the CT scan yet. Of course she hadn't so they sat on the phone and reviewed it over the phone together. The pulmo said SOME of the cloudiness can be due to the bronchoscopy lavage that was done prior but it does not account for all of it. The pulmo thinks it is micro aspiration. UGH...hello, we already rulled that out. The pediatrician wasn't completely sure if we had the swallow study yet so told the pulmo that she would look in the records and get back to her. That is when the pediatrician called me. I explained to her that Arianna had a complete GI workup while in the hospital and ruled out aspiration as a source of the problem. That was why the initial pulmo wanted the CT and bronch done. I asked if we needed to get Arianna's GI docter involved at this time and she said no not yet. I'm beginning to wonder if they will want to do the pH probe to check her acid levels. We'll just have to wait and see.

The other thing the pulmonologist mentioned was that the bronch showed high levels of eosinophils in her lungs. This means she has allergies, but we don't know what her allergies are to. The pulmo, however, wants to put her back on the Flovent inhaler to help with inflammation for the meantime.


So after discussing all of this with the pediatrician I completely forgot to mention to her about the CT scan saying she has normal thymic tissue. We should be getting her immunology results this week so it will be interesting to see those results as well. She took notes of everything we talked about and will be composing an email to both the pulmo and immunologist to see what the next steps will be. She is being so kind and cc'ing me on that email. I told her I am completly overwhelmed trying to get all Arianna's doctors together about her issues and could really use some help with the communication. She is taking into her hands now (which should of been done a long time ago) and getting things going in the right direction.

I did ask about whether we need to keep Arianna in isolation and she said yes. The first and biggest concern is the measeles outbreak and there have been 10 reported cases. Because Arianan cannot be immunized this could be a deadly disease if Arianna gets it. Also the fact that we don't know how serious this lung issue is, we can't afford to have her get sick. So my hopes for being out of isolation soon were just crushed. It's okay...cause the most important thing is my daughters health. I'm just so thankful I don't have any other kids and can focus fully on Arianna's health right now.

One other thing I wanted to tell you all was...THANK YOU...without you guys I would feel totally alone. If you have ever been in isolation you know how lonely it can be. You spend all your days at home with only a few outting to get necessary items for the house and occasional doctor appointments and tests. I am so grateful for the internet, which allows me to stay connected with such wonderful friends like you all. I know you have alot going on in your day but you take the time to stop by and check up on us. You leave messages to let us know you care. You will never understand how much that helps me get through my days. So once again...THANK YOU!!