When we were in Airo Digestive the ENT referred Jillian to immunology because of some suspected allergies, she always seams to be sick with something and it takes her longer then normal to bounce back, and because she struggles so much with vaccines. So, I called and got us an appointment.
On days were we meet I new doctor I have butterflies in my tummy! I told my coworker that it is like going on a blind date. You have no idea if you are going to get along with the person, if they will listen to you or if you will have the same plan. We have had (and still have) some amazing doctors on this journey who have helped Jillian and always wanted the best. They have listened and worked with us. There have been some that stand in the middle that do their job and while I am sure they care, they are not always the easiest to work with or the most open or have the best communication. Then there are the doctors that I would really like to never talk to again.... EVER. There are three specifically that are on the Amanda Crap List. Luckily the likely hood of us seeing one of them is next to none because he started his own practice however at anytime we might have to deal with the other two. It always scares me when we meet a new doctor that they are not going to listen to me or understand what I am talking about. Jillian has no overarching diagnosis. She has a lot of strange symptoms that have yet to make sense to anyone.
So I did what I normally do before we meet a doctor... I look them up on-line to find out about this guy. Everything about him that I read was glowing. He was voted one of the nations top doctors for 2013-2014. He has done a lot of great stuff in medicine. Honestly this made me feel a mix of hopeful that he was as good as the internet made him out to be, and a littler nervous that he was book smart and not talk to parent smart.
I was blown away! He is one of the most child and family centered doctors we have met. The whole clinic was great. The person weighing Jillian understood the need for us to get a good weight on her and they were fine with us undressing her first so we were not weighing her clothes (some clinics get really annoyed by this). Her weight and height are the exact same as they have been for months. She is back under the 5th percentile for both weight and height. She still sits at at 50th percentile for wight for height. Jillian hates the pulse ox and blood pressure and the lady doing those was great (her pulse ox was low for her yesterday... not sure why). The nurse that came in first was really good. Then the fellow came in. She took the time BEFORE she walked in the room to go over Jillian's chart. To me that is huge. I can quickly give someone the highlights of the last 22mo however hashing through it all takes a long time and I end up forgetting parts. There is too much to remember. The fellow talked with us for a while. She looked at Jillian and said that we would probably be doing blood work and that for one of the tests she would need to have blood drawn, get a vaccine, and then have more blood drawn 4-6 weeks later. This I was not expecting (actually this kinda hit me like a train and I did not know I was standing on the tracks). She said we would talk about in more when the doctor came in.
The doctor came in and we talked. He really wanted to hear what we had to say. He said that he agreed with the fellow that we needed to do blood tests and the testing with the vaccine. I loved that he had a conversation with us about the vaccine issues and did not just look down on us for not having her shots up to date. Many medical professionals have judged us for that and she is not up to date on her shots for medical reasons. With him it was a conversation about how he could best help in that area and what was most important. The decision was to give her the MMR shot.
We went down to the lab. They needed a lot of blood. They had to calculate it out to make sure they could take as much blood out of her in one day as they needed. Luckily they could. Jillian was not happy about it all but she was a trooper about it.
Now we wait. Ever feel like you are sitting on a bomb and waiting for it to go off? That is what I feel like right now. We are waiting for this shot to take its affects. It always takes a few days and then by 10 days out she is so sick she can't handle it and we need to see a doctor. So now we wait. We joked with them that they should just schedule us a room for 10 days from the shot. Hoping we don't need it, but reality and the past is very vivid in our minds.
The doctor said the he likely does not hold the magic piece to all of Jillian's problems. He doubts he will be able to solve the big picture stuff for us. We kinda stumped him. He said he has never seen a kid that gets respiratory symptoms from a shot. He told us his plan was to talk about her case with other doctors in the department to see if anyone else had an idea. I am thankful that he is not too prideful to collaborate with others to try to get my child the best care that he can. That means a lot to me. It is always a strange feeling when you stump a really smart doctor, but I feel like he is going to do the best he can for Jillian. Like we told them yesterday, we have a lot of tests that come back "normal," we don't want something to be wrong with our daughter however something is wrong with our daughter and we would love some answers. We always say we want them to tell us what is wrong... just don't let it be something too bad! We watch our daughter's body fail her daily (the fellow touched Jillian's legs yesterday and without us telling her she asked about Jillian's low tone because she could feel it in just touching her legs) and we want some reason why. We want something to point our finger at and say "this is the problem." The older she gets the less likely that I feel that the problem will be easily fixable but we will keep looking. Our goal is to give her the best life possible, God gave her to us here on this earth and that is the least we can do for her, to try to give her the best!
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| Waiting for labs. I was trying to distract her |
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| Jillian sleeping on my legs Tuesday night. She fell over with exhaustion |
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