It is always an interesting stat to Pulmonology appointments because they have you fill out a questionnaire about how your child's lungs are doing. Normally these are hard for me because Jillian normally needs her neb for about a week out of every month and the way the questionnaire is set up it makes it hard to accurately document that. Well this time was not hard. Her lungs have rather sucked lately. She has done four different rounds of steroids since we were last in Pulmonology. I have stopped keeping track of neb meds we have been though this fall/winter because it would be depressing (as I type this she is taking yet another neb)
They took Jillian back for vitals. She was such a big girl and I was so proud of her. She is really improving with how well she does with vitals. In the past she has always gotten upset with pulse ox and blood pressure but she is growing up so much. The lady taking her vitals was so impressed she gave Jillian a crown! Jilli was so excited! (ps, her pulse ox was not all that great yesterday...)
We then went to the room. A nurse came in and went over stuff with us. The nurse was really nice. I think every time we have seen pulomonology we have seen a different nurse. Thats a little weird for us because we are so use to having "our" nurse in GI, but all the nurses we have seen in pulmonology have been kind too!
Then the doctor came in. She commented about how long our winter has been with Jillian's lungs. We talked a little bit. We had to switch Jillian in January from Advair to Simbacourt because of insurance. I don't think the new med is working as well as the old one. There is one other med that is on the insurance preferred list that we have to try before we can appeal to get her old med back. This just seams CRAZY to me. So we are switching to the other med to give it a trial for a month and then go from there and figure out if this is a good med for her or if she needs to change meds again. We have already met a challenge with the new med because Walgreens does not have any and they are not sure when they can get any! We will see how that turns out.
The doctor then listened to her lungs. She kept going back and listening to one spot. Oh those moments when you wish you could be in someone's head. She then went back and looked at her most recent chest x-rays. She did not have a x-ray when the pneumonia was the worst.
The doctor then said that she wants to get a CT of Jillian's lungs. She wants it in the summer after virus season has passed. When we scheduled the test they told us that she would have to be sedated for the test.
We then went over to the mall. Jaime and Jason met us for dinner. We have been trying to meet for dinner with them in Milwaukee for many months so it was good for it to finally happen. Uncle Jason taught her how to play "drums" with chop sticks.
Sometimes after these visits I feel bad. I know that sounds strange, but I feel like I am a realist with Jillian's stuff. I don't like to think im pessimistic (maybe I am) but I tell it like it is. Her lungs are not doing great for her. As she gets older her lungs are needing more and more help. She is needing meds for her lungs more and more. I don't sugar coat Jilli health stuff, because that will just hurt her. If I go in and say that she is doing great but yet she is needing neb treatments most days in a week I am not doing her an favor. I try to put a positive spin on it and talk about the great things that she is doing because she is one amazing little girl, but there are many things going on that still need to be worked on and that we need plans for. I feel bad though because I feel like I come off as being so negative. People don't really want to hear reality when it is not happy (I have learned this to be true frequently when people ask what is going on with Jillian many don't want to hear about the struggles or will say something really odd to make themselves feel better about her situation) We do have a lot of joy in our life. We are blessed to be Jillian's parents. I would not trade her in for the world! I love her a lot and she does amazing things. I want to portray an accurate depiction of Jillian. Thats my goal... explain the real because explaining something else is not a service to anyone.
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| Our Tubie Princess in Pulmonology at Children's Hospital of Wisconsin |
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| Uncle Jason teaching her how to play chopstick drums at PF Changs. Service last night at dinner was SLOW (and they were snippy about Jilli when we were seated) so she was needing some entertainment while we waited for the check |
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| Jillian's look today. We got her these 12mo pants this weekend. They keep falling off of her but. If it was not for her onsie today she would have plumbers crack! But they are super cute! (ps, they looked like they would fit and they are the same brand as hear jeans from last week... maybe we will get her a belt!) |
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| Dino nebulizer girl watching Mickey on the iPad. I am so thankful for the iPad! |
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