Faith had her clinic visit this morning. She was going once a week and we now go every 6 weeks. Most clinic visits we are there anywhere from 2-4 hours. Clinics involve seeing her team of doctors (nurses, doctor, nutritionist, physiotherapist, respiratory doctors, gastrointestinal doctor, and a pharmacist). Sometimes she sees the whole team while others she may see less. We learned a lot in clinic today so forgive me for being all over the place in this blog.
Today we were very anxious to go to clinic as Faith has been acting different. Over the last 24 hours Faith has thrown up twice. The first time was while she was sleeping. We had to strip her sheets, change her, bathe her, etc. The other time was last night and it went everywhere (all over the couch, floor, her, you name it). She easily threw up one bottle if not more. She threw up so much and so hard that she pooped her pants as well. She has also developed a little cough, had a runny nose, been sneezing, etc. She has not slept much at all and Brandon and I have spent much of the last 24 hours trying to keep her as comfortable as possible. We are exhausted, but when we look at her and realize what she is going through we quickly get over our exhaustion. Now I know most of you may think she just has a little cold so what is the big deal. The big deal is Faith cannot fight off things as easy as other kids. She has mucus in her lungs so everything sticks. Bacteria can grow in the mucus causing infection in the lungs. We want to keep those lungs as healthy as possible to prevent long term lung damage.
Ok enough of getting side tracked. So we went to clinic this morning and explained everything that was going on with Faith. Faith even spit up 3 times while we were there (went through 3 outfits).They decided to run some tests to rule out any bacteria. They did a throat culture (same test we have as adults to test for strep throat) and she also had to be suctioned (they stick a tube down her nose that goes into the back of her throat). Both tests will be sent to the lab and we should get the results early next week. If she tests positive for Pseudomonas (the bacteria she had just over a month ago) she will be back on the TOBY treatment (see earlier blog for explanation) for 3 months. We are praying the test comes back negative. She has had her nose suctioned now three times and you would think we would be used to it by now but seeing her scream like that makes you feel awful as a parent. There are so many times when we think this isn't fair. She didn't do anything to deserve this, but then reality slaps us in the face as we know this is the hand that has been dealt so we have to make the most of it.
The positive news from today's clinic is Faith is now in the 75% percentile for length and weight. This was great news as she was not even in the tenth percentile when she started this process.
We also learned some interesting news from the social worker. In Canada Cystic Fibrosis medicine is covered until they turn 18 years old. Once they turn 18 it will be critical for us to have the best benefits as medicine is no longer covered. Without benefits medicine usually runs about $50,000 A YEAR!!!! WOW, we were shocked and at the same time so thankful it is covered for now!! We will definitely be doing some research to get the best benefits.
Now we wait to find out the results from the test. We are keeping are fingers crossed for no bacteria. Faith came home and ate before going down for a nap. We were at clinic for 4 hours today and they definitely exhaust her.
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