Tripler Army Medical Center is where Rachel goes to the hospital. She has a great team to help her manage CF. Usually clinic day is not one we really dread, but it's not something we look forward to either. We've gotten into the habit of making special treats for the CF clinic team. I think between seeing Rachel and her unique personality and the treats, they look forward to seeing us. Hehe.
I'm a little late in sharing this, but November 18 was Rachel's last clinic day and it was one to remember! Oh, what a great day. No tears, wonderful news, and lots of laughs.
The appointment started with the usual vitals which are no longer a problem for Rachel. She used to have issues with the blood pressure cuff. Nurse Laura always does the vitals and chats with Rachel about what she's been up to. Then we see Nurse Carol. She came in that day wearing her paw print scrubs and socks and she had a stuffed puppy dog for Rachel. Rachel loved it and said (in her sweet Southern tone), "Awe, it's so cute. Thanks." We talk about how Rachel's been doing. Nurse Carol asks if I have any concerns. I say, "No. She seems to be doing really well." (it's been over a year and she hadn't even had a cold or cultured any bacteria from the throat swabs). Then Nurse Carol asks Rachel, "Hey Rachel, do you want to do your throat swab now and get it over with so you can play with Julie or later?" With only a little coaxing, Rachel picked "now". Nurse Carol finds Julie (child life specialist). Rachel chooses to sit in a kiddie chair all by herself (instead of my lap), she holds my hand, I count to three, then she closes her eyes and opens her mouth. I was so proud. No crying. She did make sure to says how much she doesn't like throat swabs. I said, "That's fine Rachel, nobody likes them." Rachel sits with Julie and they do their own thing and talk about CF stuff. We see respiratory, the dietitian, & I talk to the endocrinologist (I had questions regarding CF related diabetes - Rachel doesn't have it - just wondering about it). While I was talking to the doctor about CF diabetes, Rachel notices him (he's rather tall & has big feet) and tells Julie that he looks like a penguin. They laugh and when I heard the story I laughed. My silly girl. Last we see the pulmonologist. He came in and I said, "It's been a good visit. So, don't bring any bad news!" ha He says he's not. He chats with me first, asking if I have any concerns and how Rachel is doing. Again, I have no real concerns. I did ask him about her recent annual abdominal ultrasound. He said it was normal. I was amazed because last year's results her liver was classified as a "fatty" liver and it been slightly enlarged since birth. I questioned the "fatty" liver classification and he said, "Rachel's ultrasound was classified as normal.....a normal liver." Not a normal CF liver, but a normal liver. Period. I was on cloud nine. So, after the ultrasound chat, the doctor pulls out Rachel growth chart...specifically the weight one. He kinda timidly talked about where they like the CF patients to be on the chart and how Rachel is at the 95th percentile. He goes on to talk about added calories. I cut him off and say, "Hey, if I need to stop feeding her so much, just tell me. I'm not offended one bit." I think that is something a parent and a person with CF would love to hear. Usually, people with CF struggle to maintain a healthy weight. So, after my chat with the doctor, he examined Rachel. We left the CF clinic team with the goodies we brought and got the heck out of there.
So, to recap - a throat swab with no tears, normal abdominal ultrasound, excellent growth (especially the weight), and there's a penguin like doctor in the pediatric clinic!......oh yea, and a super happy Mommy!
|So there, CF!|