Today I open up the blog to you. What question do you have? What do you want to know. I know I have written over 130 blog posts in the last year about Jillian but I am positive I have not made everything clear. I am sure there are still questions out there either about Jillian or about tube feeding in general. So ask away today and I will answer.
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| Coloring in Her Doc McStuffins coloring book |
So I have been busy this week writing about general stuff so let me update you about our week:
First off we have spent a lot of time watching the Olympics. I LOVE the winter Olympics. I have loved being curled up on the couch with my little miss watching the Olympics. The first part of the week was pretty normal. Thursday she woke up with a runny nose. That is not too uncommon for her. Friday I had off and we were just enjoying a day at home. We were loving the plan of seeing no medical professionals in February.This was huge since she has never gone a month in her life without seeing a doctor. I went to pick her up at one point and noticed little white bumps on the inside of her mouth. I called the doctors office and told them I thought she had thrush. She is the prime candidate for thrush. She takes antibiotics daily, is take an inhaler twice daily, is unable to drink water to rise her mouth out, and has a yeast infection in her diaper area at least 10 days out of every month. The nurse called back and said that she did not think it was thrush and wanted us to come in. We got ready and took off. Jillian's weight on their scale was down to 9.56kg (down another .1kg) and their scale tends to run high. The nurse practitioner came in and looked at it and said it was most defiantly thrush. She said that no one told her I thought it was thrush. Now she is on an oral antifungle med on top of the topical. She looked at her tummy rash and I showed her how the same rash that is on her tummy is now coming and going on her one hip. We are all still at a loss with that. After the appointment we ran to Walmart and Target to pick stuff up and then came home and had dinner and dessert while we watched the Olympics.
Today her rashes are all looking pretty good. I am hopeful that by catching the thrush so quick that we will be able to treat it quickly. The little bumps are almost gone already! Yeah!
I talked to the GI nurse on the way home from the doctor's office. I love the GI nurse. She has made this journey so much different and to be honest she has made our time at Children's so much better. Jillian loves her too! She is actually one of the people who helps to do the motility testing so she was able to talk me through how it is going to go. We were also able to discuss Jillian's meds. For her test she has to be off of her acid reflux med and erythro for 7 days before the test. The acid reflux med can not be cut cold turkey so we have to wean her off over the next week. If we craw in a hole for the next two weeks it is just because as the GI nurse put it "she is not going to be a happy person by the time test day comes around." We will make the best of it.
I also talked to her about the no sickness before the test. The paperwork that we got said that she could not have a cough or a runny nose before the test and honestly that is comical to me, and if that is true we should probably put her in a bubble now. She said that they understand with complex kids like Jillian that they will never have a time when they have no symptoms of anything but that she can not have pneumonia between now and then and that if she does the test will probably be pushed back at least 5 weeks. So now we do what we can to prevent pneumonia. Sadly this morning she woke up with a nasty cough. We are just hoping it is a normal kid kind of cough and means nothing. I never wanted to be the parent who jumped at the first sign of the sniffles. Most of the time we are very level headed about things and we don't take her to a doctor unless she has had a cough or runny nose for days. I feel like between now and these tests tho we have to treat everything quickly. Please join us in praying that this cough does not develop into more then just a bad cough. Please also pray for these test results to come back in a way to show us the best plan for Jillian. Help them to not hide what is going on but expose it. It is one of those times were you pray for the test to come back abnormally because then you have some guidance instead of more questions. Pray that we are not basket cases the next few weeks with every sneeze and cough.
Thank you all for joining us in Feeding Tube Awareness week. I hope you have learned a bit more about our journey and from that you are able to help others.
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| Climbing in her chair. Her eyes are havey today |
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| Her super chapped hands. She bites them all the time and then cracking open and bleeding does not stop her. Put stuff on them but have to be careful so that she does not eat it. |
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