WELL....let's see...as usual, it's been a while since I last blogged. I'm sure it's hard to imagine that I have a few other things to do during the day that keep me from writing.
There is a lot to update on, so I'll just start with one kid at a time and try to get it all in, or else I'll come back later and finish. Let's just see what happens!
We'll start with Taylor, since, well, it should be girls first, right? Also, because her news is what has put a spin on our lives lately! She had a runny nose for about a week and a half. It ran clear, so I wasn't alarmed. With CF, any cold can become a problem, but in our experience, usually a clear running cold (ok, snot), isn't a big deal. If it were to turn green, we'd go get an antibiotic. However, this runny nose led to a cough and it got progressively worse until it was just really bad last Wednesday (July 30). She was breathing fast and her cough sounded awful (that's the technical term!). I had been in Tampa that morning with Jackson for his MRI, which I'll comment on later, so when I got home, I decided that she needed to see the Dr.
Her pediatrician was not in that day, so we saw one of his partners. The nurse took her vitals and weight and I was concerned with two things. First, I noticed that she had only gained 5 oz. in the past 4 weeks. That's NOT good. She's very small for her age already. Then, we found out she had a 101.2 fever. She had felt warm to me, but she always does and every time I took her temp, it showed normal. I had not taken it that day, though. As the dr. looked her over and reviewed her symptoms, I mentioned that she also has CF (I never know what they pull from her chart before they walk in the door). Immediately a light went off in his head and he said, she needed to go to the hospital. Ashamedly, my first thought was, "No, I have a conference to go to this weekend." I know that it's not uncommon for a CF patient to be hospitalized for 2-3 weeks at a time.
So, I went home and grabbed a few of our things. Made arrangements for someone to fill in at church and took her to the pediatric floor. There, they did a chest x-ray, some blood work, a sputum culture and hooked her up to an IV and antibiotics. They continuously monitored her oxygen levels.
Despite all the poking and prodding and unfamiliar territory, Taylor was a trooper and so happy all the time. The nurses and other staff fell in love with her and we had many offers to take her home! I always figure they say that to everyone, but I even heard them talking outside our door, to each other, about how cute she was! She is.
To make a long story short, after many breathing treatments and frequent nasal suction, she seemed to be doing well. The dr. couldn't release us until they determined what had been growing in her sputum culture so they would know how to treat her. In the mean time, RSV was ruled out and they were talking possible pneumonia. I talked with the nurses and the dr.'s and determined that it would be okay for me to go ahead and leave for San Fransisco on Friday. If that trip were for ANY other reason, I would have cancelled, no questions, but, this was the big CF conference that I have been working towards for several months and many (many of you) donated money to make it possible. The friend from church that she was going to stay with that weekend (had she not been in the hosp.) offered to stay with her as long as she was in and then take her home if she was released. I knew she'd be in good hands and there wasn't much I could do for her, so I went. It was not easy leaving her there, but I knew it was going to be worth the trip.
She was finally released on Sunday afternoon. They determined that the bacteria in her culture wasn't serious and could be treated with antibiotics at home. Greg went up to the hospital to sign all the discharge papers and help get Lisa and Taylor to her car. I got home Monday evening. I looked through all her hosp. notes and discharge papers and they mentioned pneumonia, but no one had actually said that's what it was to Greg or Lisa when she was being discharged, so I was unclear as to whether that was her diagnosis or not.
Today, Wed., she had her CF clinic appt. (good timing!). They had been informed of the hospital stay and I believe were consulted while we were there, but I brought all of the medical records and x-ray (on CD) with me. Her dr. reviewed the x-ray and told me that she did indeed have pneumonia. SO....added to her 4x's a day breathing treatments, 2x's a day antibiotics and additional chest therapy are 3 more breathing treatments (two are an inhaler used with a holding chamber, one is with her nebulizer), and another BID (twice a day) medicine. This should be interesting!
On a positive note, (and taking into consideration the difference in scales), she put on a pound in one week! YEAH!!! So, maybe the illness was keeping her from eating all she would have otherwise and hopefully her weight gain will continue. My biggest fear, these days, is hearing "G-tube" enter into the plan, so as long as she can put on weight by herself, we're okay.
I guess that's as far as I'm going to get for now. I'll just quickly mention that the conference was great and I'm glad that I went. It was the right decision. Thanks to all who helped me get there. You should hear from me soon (I'll try!) with more details and a thank you note. But, please know that I'm very grateful!