Consult with doctors (LONG POST)

I have honestly dreaded sitting down and writing this post. It's not that it's bad but that I don't want to deal with the flood of emotions I have going on right now. Well I better start from the beginning...

So we arrive at the hospital for our consult with the pediatrician, pulmonologist, and cardiologist. We meet our pediatrician in her office and she escorts us to the conference room. My mom went with me, like always, cause she's the greatest! I wouldn't of been able to keep up with Arianna and listen to the docs without her. Plus she is a second pair of ears in case I miss something.

So we are the first in the conference room and I start to ask the pediatrician how much she knew about immunology. Last night I was trying to review her most recent labs and have to tell you how frustrating it is. Immunology is one area I absolutely don't understand. Since I don't have much faith in our immunologist it makes it very hard for me to feel she is getting the best of care. Makes it even harder since I'm always told this is the best doc to have and we are honestly thinking of switching back to the original immunologist. (If you can't tell already..I'll be all over the place in this post.) So back to the meeting... The pulmonologist and cardiologist arrive and our pedi starts by introducing us to the pulmo, and surprisingly enough he remembers us from when Arianna had her surgery. I start out by giving him a some what brief history of Arianna. I also expressed my concerns I have with the other pulmonologist, which are the following: not calling with results, doing bronchoscopy before a CT when clearly that is NOT the best thing to do (makes it hard to see what exactly is consolidation in her lungs), leaving it up to me whether to give her the Flovent inhaler, chalks everything up to Arianna's OHS and multiple anesthesia's, and tells me we no longer need to follow up with pulmonary. (This is the doctor who is married to our immunologist...beginning to see the picture! UGH)

The pulmo first asks the cardiologist to explain Arianna's cardiac function. Our AMAZING cardiologist (can you tell I just LOVE this guy!) explains her function: no residual ASD or VSD; trnsannular patch for pulmonary valve; created monocusp valve for PV, which is no longer there which means it is free flowing (pulmonary insufficiency); generous right ventricle hypertrophy with no signs of heart failure. He goes on to explain Arianna has tolerated all her weanings from Lasix...which I interrupt to tell him she has very puffy eyes every morning. He gives me a shocked look...but goes on to explain this is just because her kidneys are trying to get used to the new volume and should balance out soon. From a cardiac standpoint...this is the best news I heard today...Arianna is doing GREAT!!! He said she will need a pulmonary valve placement done sometime but not in the immediate future.

After the pulmo heard this he felt comfortable saying the lung issue is not being caused because of her heart. Good news...but where does that leave us? He reviewed her CT last night and told me it's hard because the CT was done right after the bronchoscopy and since they do a lavage (fill the lungs with liquid, then suck it out) it makes it look consolidated on the CT. This doesn't account for all the consolidation but it didn't help it any. I asked why this was done that way and he said it must of been a scheduling issue. So for anyone going to have both these tests done together...make sure the CT is done BEFORE!! Wish I would of known that beforehand.

He ruled out aspiration. YIPPEE!

I ask what caused her respiratory distress in January and he answers honestly, which means alot to me, that he doesn't know. It could of been the chronic illness she had a month prior but can't be certain if that's the case. He said Arianna has basilar (lower lobes) lung disease. He said of all times this is the best time to have this because she will produce more lung tissue over the next couple of years. His hopes is that the damaged areas will recovery as her new tissue is made. He mentioned the immunologists most recent report showed she has a low lymphocyte count, which he never mentioned to me...so I'm pretty upset about that. He also mentioned his colleague gave Arianna a diagnosis of asthma. This really upsets me because this was NEVER told to me. We are told basically to keep an eye out for wheezing and if she gets a cold to start her albuterol treatments. It may very well be something we just have to treat in the winter months, but once again we're not sure. We were told to consult with him before going on any trip that would require her to go higher in elevation, even Mount Lemon would be a concern. He said her sats would drop and she would probably not be able to walk or eat...so I told him we just won't go anywhere. This is sad for me, because I've been waiting to take her to the Rose Canyon Lake to go fishing ever since she was born. My grandfather even bought her a fishing rod months ago, which has been sitting in the closet. Just another thing we won't be able to do...but we'll find other places to take her! Lets see...anything else...I think that covers most of it from the pulmonologist. Oh yeah...we follow up in 6 months.

When we were wrapping things up I start talking to our cardiologist about something I discovered last week while watching Discovery Health...I'm addicted to that channel. LOL! There was a 9 month old baby girl who had a pulmonary valve placed in the cath lab. For those who don't know...we are hoping that research would get to the point where these valves could be done through the cath lab, which would elevate the need for multiple open heart surgeries. We have been praying that science would get to that level and Arianna wouldn't need to have another invasive surgery. I found the article on the Stanford website to make sure this was correct information. Here is the article if your interested. He told me he was unaware of this happening with children this young and wants me to forward the article to him. He cautioned me about where I get my information, but once I told him it was at Stanford he told me he is friends with on of the doctors in the cath lab. I'll be curious to see what he thinks after reading the article. There is hope for the future!


Then, once all but the pediatrician leaves I begin to discuss my concerns with her about the immunologist. After several minutes of talking she asked if I would mind if she made a consult for all three of us to talk, just like she did today. I thought, "GREAT!" I told her I don't want to step on any toes but I really am thinking of leaving this doctor, but know he is the best and want to try to make this work. She is very interested in learning more about immunology herself...and this will be the way she gets us into this consult without the doctor thinking I'm pulling the pedi in because I don't trust him. She then mentioned Arianna is her first DiGeorge patient and she is wanting to learn all about her sydrome along with me. She has treated DiGeorge kids in the hospital setting but says it is alot different when you follow the child there entire life. I feel so blessed to have her working so diligently with us and being such a great advocate for my daughter and myself.

So...where does that leave us...we are told to still stay away from large groups of children, church, daycare, any who is sick, etc. It would of been beneficial to have the immunologist attend this meeting today but that was thought of too late. Our pediatrician did asked, "When can I start to treat Arianna like a normal child?" And basically the answer was led back to..."keep doing what your doing." We may never know WHEN or IF we can treat Arianna like a normal child, but we can give her the best life possible. It truly breaks my heart that I cannot take her to church and enjoy a Sunday morning service like most people, let her go to the toy store and pick out a toy, attend our support group meetings, and so many other things I would love to do with her. But we will make the best of our situation and remember that God is in control. The doctors made it sound like we should continue this path for, at least, the next year. That is just a small amount of time when your looking at the big picture. I had a vision tonight of Arianna being in her early 20's, sitting down for tea, talking about her life as a child and all that she has been through. She looked at me straight in the eyes, as I cried and explained to her how horrible I felt for never being able to take her places that most children could go....and she looked at me with the sweetest face and said, "Mom...I don't remember those times so don't worry." I guess when it boils down to things, she really won't remember these first years. It's us parents who go through the emotions and struggles of adjusting to our new 'normal'. Then I sit here and look at a beautiful little girl who has the energy to run around the house screaming and I just thank God for all that He has done. I'm so thankful that she is even alive today. So many families lose their children due to CHD's or other medical illnesses. I have to be thankful I even have Arianna here with me today, to love on. Who cares if he have to spend SO much time at home. One day when she is a teenager I'll be looking back wishing she was this little baby who couldn't go anywhere, just to get a few minutes alone with her. I know we all have our areas we struggle with and I thank God that he has shown me the bigger picture. I appreciate SO much but sometimes I just hate MY situation...no matter how big or small it may seem to others. I just wish I had a NORMAL like everyone else. I wish Arianna didn't have a genetic condition that could possible be passed to her children. I wish she could go on play dates, attend Mommy & Me classes, or even play at the playground. I guess I feel like I'm still mourning for losing the 'healthy' child I thought I would have. I know that God has a plan for her and even though it wasn't the plan I was hoping for, I know she will touch many lives along the way.