Wow. What a long unexpected weekend we had.
First, I want you to stop and thank the good Lord for all of the healthy children in your life. While all of this is so very frustrating and such a struggle for Tucker and our family - after everything I've seen this past weekend I think we've got it pretty good. We saw and talked to so very many sick children and their families. Some of them have been there for months. So, I thank the Lord that, while my child is sick and has a lot of tests and struggles ahead of him, he is healthy enough to come home with us!
Second, I want you all to know what an amazing experience we had at UNC Children's Hospital. We had the most attentive, caring nurses you could ever ask for. All 3 days Tucker had the same nurse, Danielle. She was amazing! Every time she was getting ready to leave our room, no matter how bad Tucker felt, he found the energy to wave, tell her bye and blow her a kiss. As often as we wanted to, as long as he wasn't needed in his room for something, we could "check-out" of our room to go on a walk, go to the play room, to the cafeteria for me to eat lunch, etc. I think one of the things that impressed me the most was the way that they made you feel like you were the only patient on the floor. When Tucker started running a fever and having a hard time breathing on Friday within 30 minutes they had given him medicine, a breathing treatment and 2 different doctors had come to check on him! UNC does an awesome job of keeping things personal. The 3 days we were there the staff was basically all the same. By the time we left, basically, all of the staff on our floor knew Tucker by name. They were constantly playing with him and talking to him and telling him how adorable he was! Mr. Daniel called him crazy hair boy! Wink! So, while we were glad to come home to Daddy, Dylan, Madi and Dustin, we will miss Mrs. Danielle and all of our new friends at UNC Children's Hospital.
Diagnosis? Still none. However, I feel more hopeful now than ever that we are on the right track. There are 3 possibilities they are exploring right now. 1.) Immune Deficiency Disorder 2.) Cystic Fibrosis 3.) Ciliary Dyskinesia When they originally did blood work Friday night, Tucker's white blood cell count was 39. (extremely high) They did repeat blood work on Sunday and it had come back down to 13. This tells us that the antibiotics that they were giving him in his IV were doing their job. Yesterday, they did a bunch of blood work to begin the process of looking for an immune deficiency disorder. They are checking several different things. I will list them - they may mean something to some of you and may be completely foreign to others - IgG, IgM, IgE, IgA, total compliment, Diptheria Titers, Tetnis Titers, HIB Titers and pneumoccocal. They discharged us on the oral version of the same antibiotic he was getting through his IV. He will take this for 2 weeks and then return to see the pulmonary doctor when he is done with it. When we go back to see the pulmonary doc they are also going to do a sweat test that day - this will test for Cystic Fibrosis. The test they do to determine if he has Ciliary Dyskinesia is quite invasive and requires him being put under anesthesia - again. We are holding off on this test until we have explored the other 2 options since it's more invasive.
How's he feeling? Better than Friday. Same as "normal" for him. He still has a nasty cough and runny nose and a pretty persistent wheeze. He didn't have a fever at all on Sunday, however, he did wake up with one this morning. I have a call in to the doc now to see how they want to handle this....
As for Dylan, Madi and Dustin - they had lots of fun this weekend. They started with a friend's birthday party Thursday afternoon and then went straight from there to spend the night with some other friends! They were so excited! My mom picked them up Friday afternoon and took them up to the lake with her for the rest of the weekend. They were exposed to tons of fun, sun and lovin'! This is their last week tracked out before Dylan goes to 2nd grade and Madi starts 1st grade! Doesn't even seem possible! Given our circumstances - I'm hoping to make this week as fun as possible for them
Tucker got lots and lots of "Mama and me" time this weekend and now he has decided that there is no place better than Mama's hip! Between that and Scotty switching to "second shift" this week it could make for a long week!
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