Cardiology, pulmonary, ENT, GI testing...

Today was very long. Emotionally on many levels as well as physically from being so tired. Alana is doing amazing through all this though. The things that make it hard for people to sometimes handle her; the stubbornness, her ability to speak her mind (vocally at that), the bull headed attitude she takes as well as her ability to be completely oblivious to things around her are all ways that she has taught herself to cope with an invasive, scary, not-in-control of your own body world. We have been working with an amazing counselor to try and get her to find more soothing, relaxing ways to deal with her fears and doubts and we've made strides in that area. Today she used some of those techniques (like using the doTerra tension blend) and thinking of happy thoughts. While this only lasted about 2 minuets into prep before she became hysterical and needed to be held down by myself and 2 nurses to complete it, the fact that she mentally tried to prepare her self was more than I could ask for. It will get better, she's open to the concept and idea and that is what matters because eventually 2 minuets turn into 5 then 10 then endless. 

We started the day with cardiology and the option they gave us was to put her on a beta blocker. Dr. Mc and I have talked about this and I do not feel this is a route I want to go yet. It isn't imperative that we do that and I do not feel that the risk outweights the benefits in this matter. IF it continues to get worse or she is more uncomfortable then we will revisit it. The doctor wants either a HRCT of her heart/chest or an MRI. We are waiting to see the vascular malformations clinic tomorrow before that gets scheduled to see which route they will be going. 

After that it was pulmonary and a PFT. She did very well on the PFT! We saw the doctor and he feels that having a sleep study done, exercise study, HRCT (as well), and bronchoscopy with biopsies would be beneficial to her and her ongoing care. Trying to figure out where to put this all in is another story completely. He wants to know what her lungs look like. He wants to see if the "findings" on all her other CTs has improved,worsened or stayed the same before really giving us a path to follow. 

ENT was next. I really like the doctor that we are seeing for this. She was well prepared and very kind. She did go over of course all the risks with doing the sinus surgery being as it's in a "high rent area" and that she likes to be more conservative with her surgeries to help the kids heal when they are this young. You can always take out more but you cannot put it back was what she said. She also added another type of scope that she's going to do from and ENTs point. Alana has had a lot of scopes but I guess this one is one she hasn't had. It will be looking to see if there are any malformations around the voice box that could be allowing food or fluids to enter the lungs through a teeny tiny flap that should automatically close. She said that the voicebox is closing but there could be a connective tissue section that is more like a tiny slit that cannot close. 

After that we had the big procedure for the day. That took the longest and as mentioned above, was very unnerving. After that Alana was done and we finally got to come back to the hotel (pay no mind that it was now after 5 pm and we had been there since our first appointment at 7:30 am). After reting for about an hour she decided she wanted to try eating which was a great news. She nibbled on dinner a bit but slowly became more talkative and started smiling again, all of which made us even prouder of her and what she's able to overcome. By bedtime she going on about mindcraft and why her heating pad giraffe was spilling his guts (beans started to fall out) out of himself and how was I going to fix it.

Tomorrow is another very long day. We get the results of today's procedure and go over the 3-day impatient stay that starts next week, from there we go to another big one, immunology to go over her interleukins, cytokines, and other fancy immunology problems. This was one of the first appointments made and I am so very hopefully that something comes of these first two as these can dramatically change the course of some of the things we are doing to help her. After that we meet with genetics to go over her "genetic duplication of unknown significance" and then it's another important one, the vascular malformations clinic. This ties into the cardiology appointment because there is concern that she has a venous return problem and this is where these guys will come into okay to help her. These appointments run from 8:30 am until approx. 4:30 pm. 

I don't know even what to hope for or expect tomorrow morning. I know what I don't want to hear and that's another life changing surgery. Although we might not hear that until after next weeks visit i suppose.