The school called me today to tell me Brianna had some spots on her torso that were suspicious of chicken pox. They didn’t want me to pick her up, but wanted us to watch them to see if things got worse. Great. Brianna needs one more thing. I took her to the doctor to have him look at them and he said the spots aren’t defined as of now to be chicken pox, but that kids that get chicken pox usually feel sick prior to getting spots - headache, low grade fever, etc - and Brianna hasn’t been sick - the first time since Halloween. I think she hasn’t been on antibiotics for 2-3 weeks now! So, he said it was a low probability that they would turn into chicken pox, but we’ll know tomorrow. So we wait.
- I met with a chiropractor that specializes in supporting health, not just the spine, to discuss Brianna’s issues. I first asked if eating gluten / dairy could have the effects we’ve been seeing with Brianna for a week (Her behaviors have been horrible! Everything seems to be sensory related - it seems Brianna’s sensory system is all of a sudden too sensitive) - would it last that long? She said, “Absolutely.” She said she does not believe that kids with the correct guidance have behavior issues if they are healthy - she believes behavior issues frequently point to an unhealthy gut. And with the two page health history I gave her about Brianna, she believes Brianna’s system is very inflamed and unhealthy - which leads to food intolerances. She also said that the gut makes up an important part of the immune system. So if we can get Brianna’s gut back to a healthy state, it will just help her to be healthy. She thinks we are probably correct that the soy and dairy are triggers for her eczema and she thinks we should continue to keep these out of her diet for a while. She suggested some supplements for Brianna and she is going to help me with the pace to change things for Brianna - she believes that Brianna’s system is so sensitive, that we can’t change too much because we’ll overwhelm her. I am also going to meet with a nutritionist to look into a milder diet for a time to give her gut that time to heal - while she eats foods that are easy to digest and will give her gut some time off. I feel so much better that we now have a plan. And she did not make me feel at all that I’m a crazy mom. I am just so tired of doctors not considering all of Brianna’s health issues and how they work together. I believe this doctor will be able to help us heal Brianna’s system from the past two and a half years of attack.
While we were at the doctor, I asked him to look in her ears because she has been so resistant to wearing her hearing aids. He said she didn’t have an infection, but that the tube in her right ear was out and was sitting in the ear canal. He thought it could hurt her to put the hearing aids in with the tube there. So now we feel bad that we tried so hard to get her to wear her hearing aids, and she really had a reason to not want them, but she couldn’t tell us. The weather is finally changing! Good things are coming for Brianna!
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- Today was Brianna’s first appointment after treatment. She was scheduled to go the first week of December and I had to reschedule. Then she was scheduled the following week, but we had a huge snowstorm. So we went today - in the rain/sleet. Brianna is so excited to go to clinic. Funny how she loves it. When we got there, the child life team and the nurses were excited to give Brianna her Christmas present. She carried it around, happy as could be, without opening it until after vitals. It was a Poochy pet - a puppy in a purse. She LOVED it! Funny how she carried it around everywhere we went - we’d get ready to go and she’d get her purse. First we went to get her echocardiogram. Brianna started to protest when we went into the room. We were able to calm her down, convincing her they were going to just take pictures and she sat very still for most of the procedure. She did great! Then we went back to the room and Simeon was in the room next to us having his end of treatment party!!! Woohoo, Simeon!! Congratulations! Then the nurses came by with a Barbie for Brianna. Who needs Christmas? Then we went to the lab for blood. Again, Brianna protested at first until we convinced her she was going to get her finger poked just like in Cedar Rapids. OK. She sat well and did great. Dr. Staber came to see her and didn’t have much to tell us about the rash on her face. She said it could be viral or it could be a drug reaction. She said to put Aquaphillic on it four times a day and see how it was when she is done with the antibiotics that she is taking for her ears. No answer, really, just told us to wait and see. Frustrating. She was also shocked when I said we needed the paperwork for Dr. O’Brien because we were going to be seen the next two months in Cedar Rapids. She said she’d like to see her patients for the first six months and then let them go to their local doctor. But since the staff doctor had already said we could do this, she reluctantly agreed. We arrived at the clinic at 9:00 and left shortly after 11:00 - not too bad.
Merry Christmas!!! Stay warm and drive carefully!
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I am so proud of Brianna. She is never afraid when we take these side trips to the doctor. She has every reason to be scared, but she struts in happy to greet the day and some new people. Of course, everyone thinks she is just adorable. She is so cooperative for getting her temperature, blood pressure, O2 sats, and for listening to her heart and her breathing that many commented that she is just too experienced - that statement is just too true. They reviewed my health history items and we played as we waited for her turn to go to surgery. I asked on the phone if I would be able to take her to the OR and they said no. I asked at the hospital and they asked the doctors and everyone was fine with it. It sounds like this is not their normal practice, but I kind of felt like Doug and I had earned the “experienced” badge and they allowed me to take her into the OR. (I also think it helped that the anaesthesiologist went to the University of Iowa so was used to this practice). Brianna held my hand and we walked down the hall to the OR. She was just so brave!! When we went through the double doors into the OR suite, she held my hand a little tighter and hugged her bear a little harder. She started to act nervous and started to cry a little as we walked farther down the hall. When we got to her OR, she stopped in the hall and started to cry. I told her she’d be ok and picked her up to carry her in. When the doctor was ready, I put her on the table and held her hands while the doctor gave her the gas. It went so smoothly and I so appreciated first of all, being able to be with her until she fell asleep and secondly, that this doctor had her lying down when he gave the gas. Other times, she has sat on my lap and then she gets very heavy when she goes limp so I usually need help lifting her onto the table so we can protect her head. It went very well with her lying down this time - and she could see me instead of just feel that I was there. The doctor came to tell us he was done about 15 minutes later - amazing how quickly it went. He said her ears didn’t look too bad, but the right ear did have fluid so he drained it and will culture it. He decided to put in round tubes because they fall out easier on their own - and I think he would like to avoid future sedations if he can. He told us we needed a break because she’s a sweet girl and has been through enough. Can’t disagree with that! Then they came to get me to join her in the recovery room. She gets so mad when she comes out of anaesthesia. She was wanting me to hold her and pushing me away at the same time. She sounded hoarse and wanted to cough something up, but nothing came. The nurse even told me how sweet she was as she was in this mad mode. I told the nurse that she really is sweet when she’s not like this. Her response was that she’s seen LOTS of kids come out of anaesthesia and she could tell Brianna was sweet. :) When the doctor came to check on her, she started clapping and gave him a thumbs up - she knew he was responsible for this and now it was done! Once she calmed down, we went back to the room to join Doug. She did great once she got over that hump. We left the hospital probably less than 2 hours after surgery. Excellent! We spent the rest of the day trying to get her to allow herself to sleep. She ate some popsicles because I think her throat was a little sore. Then she kept asking for more food items - more popsicles, juice, chips, chili, crackers, etc. - if she has something in her mouth, then she wouldn’t fall asleep. By evening, she was exhausted! Hopefully she has a restful night tonight. It feels good to have that behind us now. We hope this helps her ears and her balance issues that have maybe been off with fluid in her ears this last two months. She really is such a trooper! She made me very proud today - she is a great patient!
Don’t know if I’ll have time to update again until after Christmas so - Merry Christmas! Stay safe with potential bad weather and enjoy time with your families!
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We got a call from St. Luke’s Hospital today that the surgery is still on for Monday, but it will happen at the hospital instead of the outpatient surgery center. Whew! I was worried it would be rescheduled. Brianna really needs to have this done so she can start healing. Now I just need to get my shopping, cards, baking, wrapping, etc. done for Christmas. I can’t believe it is in a week. I am not ready yet. So, instead, I need to stop and remember that the true meaning of the season is not that I get these things done, but to remember that God gave us the the true gift of Christmas.
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