It's been so long since I've posted an update on Tucker that I'm not even sure where I left off...and to be quite honest with you I don't have much "news". We still have no "answer", but, I'll give you what I've got! wink!
Back on September 1st Tucker had a ciliary biopsy done. This was by far the most traumatic procedure we've been through. It was awful. The point in the biopsy is to collect cilia so that they can look at them through microscopes to see if they are working properly. If they aren't...then we have an answer. PCD. Primary Ciliary Dyskinesia. Not the answer we are hoping for, but....it's an answer. However, this answer would still leave us hanging. There is not much that can be done for this genetic disorder...other than treat the symptoms. Lots of pneumonia, ear infections, sinus infections, chronic cough and wheezing, etc. I will spare you the details of the biopsy....just know that it was not fun and not something I would put him through again. They didn't give him anything to calm him or put him to sleep....just made Scotty hold him down. Poor Tucker. Poor Daddy. Not only was the biopsy awful....it takes 8-12 weeks to get the results from the biopsy. Talk about God trying to teach somebody patience!
While we are patiently waiting on the results of his biopsy we are basically just maintaining. We did see the GI doctor and we saw an immunologist/allergist. The GI doctor told us that he is on all of the meds he can be on for reflux and there really isn't much more he can do for him. He checked for malabsorbtion, celiac disease and a few other odd things I have never heard of. Needless to say they all came back fine! The allergist also did some blood work that has all come back fine so far. She ordered blood work to check and see if his white blood cells are producing the proper amount of bleach. Betcha didn't know that! Learn something new everyday....I know I sure have! So, basically your white blood cells have 2 jobs. 1. They eat any bacteria "floating" by. 2. They produce bleach to kill the bacteria. Sometimes people have issues with their white blood cells not creating enough bleach...or any bleach at all. It just so happens to be our luck that the phlebotomist forgot to run the bleach test when she did the rest of the blood work. So, we have to go back to have this test done. She also did skin testing to check for allergies. He had this done back in January, but, she said that in young children it can often change. Wow. Did it change. He had 14 positive allergies. Dust mites, cockroaches (eww!), ragweed, mold, grass (borderline), dogs, cats, peanuts (borderline), pecans, milk, eggs, lamb (borderline), apples and strawberries. As a mother of 4 I have been very blessed to not have to deal with any allergies (Dylan has an allergy to amoxicillin) but, no food or environmental allergies. Our allergist has told us that since Tucker isn't having any "reactions" to these things not to change anything. They could be false positives. Our pediatrician and lots of friends who have kids with allergies all say they have never heard of continuing to eat foods that you have a positive allergy to. We are a little confused as to what to do to say the least.
We have recently found out that when we did Tucker's ciliary biopsy they did not collect enough cilia to get an accurate reading. Guess what this means? Yes. He will have to do a repeat biopsy. And, we will have to wait another 8-12 weeks to get the results. As I said earlier...this biopsy was awful and not something I would put him through again. Now, here I am eating my words and facing this head on. Several other doctors would like to do a few more tests (that require him being put to sleep...again) that we have been hesitant to do. Scotty and I have finally told them (after lots of thought and prayer...not in that order) that they have one last shot. They can put him to sleep one last time....and get what they need "while the gettin' is good". We are currently waiting on a date for this last procedure. This procedure will include a repeat broncoscopy, an endoscopy, an infant lung function test, more blood work, the ciliary biopsy and possibly a test that is very similar to the PH Probe that he had done before. They told us to be prepared to stay at least one night possibly two. The last time he had the PH Probe and the broncoscopy he got very sick and we had to stay longer than we thought we would....I think they just want us to be prepared for what could happen.
So, really...that's all I have for now...it seems like lots of information....but, in all reality it's pretty much...well, none. Please pray that Scotty and I continue to seek the Lord's will through this and that we can continue to have patience and do what is in Tucker's best interest. We really appreciate everyone's support .... in the past 14 months we have been to doctor's appointments, tests, procedures, research labs and more doctor's appointments...it's been long. It's been tiring. It's been frustrating. It's been possible because of all of the support from our friends and our family. So, really...thank you.
But you, Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness. -Psalm 86:15
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