We Don't Plan To Make This A Tradition!

   It's been so long since I've blogged that I don't even know what to blog about or where to start!

   Think I'll start here.

   This year Tucker and I broke tradition. We didn't eat Thanksgiving at Gigi's. We didn't eat for a second time at Nanny and Papa's and we didn't eat for a third time at Papa Cash's. Instead, we spent the day in room 6C10. We don't plan to make this a tradition!

    The past ten days have been trying. They have been long and tough. Stressful. However, with God's mercy and grace we've made it and they are in our past. Woo-hoo! As most of you know Tucker was admitted into UNC Children's Hospital on Thursday November, 17th. He was a very sick little boy. Severe ear infection, dehydration, lethargic, low oxygen level, working hard to breath and lots and lots of wheezing. His normal symptoms...times ten. He was pitiful. Scary pitiful. I have to say at this point I have a whole new respect for "just an ear infection". While, the ear infection wasn't our only problem it was definitely a huge part of it.

   It all started a couple of weeks before. Tucker and Dylan both had ear infections. No biggie. In fact, nothing unusual at all. Almost seems like I can barely remember a time in the past seven years that someone in the house hasn't had an ear infection.   All three boys have ear tubes, so when they get an ear infection - it drains. I don't even have to go to the doctor. We have antibiotic ear drops on hand - we use them and the ear infection goes away. At least it's supposed to. For some reason, Dylan's drainage had stopped but, his ear was still sore so I decided to make him an appointment with the ENT. Well, Tucker's ear was still draining...a lot...despite the drops and I could tell that his ear was starting to be sensitive to the touch - so I took him with us to the ENT. Our ENT cultured Dylan's ears - cleaned them out and started him on oral antibiotics. Same for Tuck.  All was great...woo-hoo, just a couple of days and we will have 4 healthy ears again! 

    I have an amazing grandma. This means that my kids have an amazing great grandma. She often goes with me to doctor's appointments and what not. Just to help me out...and because I love her company!  After we left the ENT we took Dylan back to school and we came back to my house for peanut butter sandwiches. High class lunch! wink! We both started to notice Tucker not acting the same. We could tell he was working to breath a little more and he was just acting punky. He didn't want lunch - he didn't want to play - he just wanted to lay on the couch. Not normal for my little man. I just kept an eye on him and decided to hold off and see how he did. By about 4:00 I decided he needed to go to the pediatrician. We get there and his oxygen was low, he was wheezing, extremely lethargic...he was very sick, and it all happened in about 3 hours. We did 4 breathing treatments and antibiotic shots at the pediatricians office. She sent us home and told me to watch him close. If all went well to bring him back at 4 the next afternoon for his second round of shots. About 10 AM the next morning I decided he couldn't wait til 4:00 to be seen again. I took him back to the pediatrician around 10:00 and as soon as she walked in the door she saw him and said he needs to go to his pulmonary doctor. We packed up and headed to UNC. As soon as we got there the nurses took us straight in a room and got busy trying to get him to "wake up" some. We tried popsicles, lollipops, ice cubes...everything. He didn't want anything to do with any of it - he just laid there in his stroller looking pitiful. The doc came in and said he was admitting us and wanted an IV started as quick as possible. It took 5 tries to get his IV in. Poor guy. He was so pitiful that he barely even fought us. Not a great sign I heard one of the nurses mumble under her mask. It took almost 2 whole bags of IV fluids before they called him "normally hydrated" again. They got us settled in our room - did blood work and cultures of his really nasty looking ear. I have never seen an ear like this before. It was red, swollen, draining and you couldn't so much as blow on it without him screaming bloody murder. It was awful. He was so pitiful and all I could do was hold him. Nothing made it better. Upon being admitted I never dreamed we would be there for 9 days. We went through 6 IV's, numerous blood draws, ear exams, respiratory evaluations, broncoscopy, endoscopy, ciliary biopsy (the one I wrote about in a previous post - that I was dreading having to re-do), more blood work, a new set of ear tubes and a PICC Line placed in his right arm. This PICC line was placed so that he could come home on IV antibiotics and not have to stay in the hospital the whole time just for IV antibiotics. The ENT doc decided not to do a cat scan because he hated for him to be under that much radiation if it wasn't necessary. He said that the cat scan would tell us if the mastoid bone was infected - he said there was no need to do this because he already knew it was. That is what the antibiotics are treating - the infected bone.  It was heart breaking for mama - I hated seeing him so sick and so scared. Every time he saw a nurse about to walk in the room he would frantically reach for me to hold him and save him from whatever it was they were about to do to him. As the days went on he started feeling better and better. He started being our Tucker again. All of the nurses and doctor's fell in love with him. They would stop by just to say hello. They would tell him that he by far won the cutest patient of the year award. They nick named him "smiley" and "surfer boy".  They would bring him candy and juice, coloring books and stickers! They were so amazing to him...to us. It warmed my heart to see them love on him so much.

    We know that he had an usually large amount of a bacteria called pseudomonas. This is a common bacteria for ear infections in healthy children. However, it's not common to have large amounts of it that won't go away. It's also not common to also have it in your mouth, throat, lungs and possibly other places. Tucker does. We are still waiting on other biopsies to show if it is in his intestines, stomach or anywhere else. With all of that being said....while it's not common for a healthy child to have this type of bacteria all over like Tucker does, it is pretty common in children with cystic fibrosis and primary ciliary dyskinesia. Another symptom of PCD to add to our list. Eeek.

    While it was a long hard week - God brought us through it. There was lots of planning on where the kids could stay while Scotty worked or came to the hospital, lots of asking family and friends for favors, lots of trusting that the Lord would provide. And, He did. We came home yesterday afternoon and we were so glad to be pulling in our driveway. It was almost surreal. Almost like a dream. We may not have got to have Thanksgiving dinner with our family, but we were still so thankful for so many things that the Lord has blessed us with. 

I sought the Lord, and he answered me, and delivered me from all my fears. -Psalm 34:4

The Long Awaited Update....Tucker Scott

  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