No sooner did we finish giving thanks did Lucy have a clinic day. There were a few things that I really needed to discuss yesterday with her whole team of medical professionals:
-Lucy has had a steady rattling cough with no other symptoms for about two weeks now.
-She has had stomach pains, increased poop frequency and amount despite being constipated, and decreased appetite for about five or six days (including on Thanksgiving Day. She ate only apple cobbler al a mode once all day). Let me just tell you that being constipated AND having painful, bulky movements is what leads to all of her recurring rectal prolapses. It's not pretty, and only large amounts of Miralax seems to be helping.
-I would like to pretend that I am the responsible parent and get Lucy tested for any pet (dog/cat) allergies before she asks Santa for a kitten because he may or may not oblige her by bringing a furry friend this year!
The clinic visit was an extremely long four hours because she was due for a routine yearly blood draw to check her vitamin levels (I'll get to her amazing bloodletting story in a minute).
This clinic visit was a good one with a few disappointments sprinkled in...
The good news is that her weight is up a bit. She is just under 31 pounds which puts her at the 55% range for her age. She didn't grow in height (38+ inches) in the last 3 months which the clinic dietitian was not too concerned about because she is still in the 50% range for her age group.
The bad news from this visit is that Lucy is being put on a 14 day run of the oral antibiotic Bactrim to clear up her persistent cough. This really upset me for just a bit because I was so proud that she had not been on any oral antibiotics since January! She was given a throat culture during this visit, and the results from that should be in next week to check if her Pseudomonas is back. Lucy has colonized and cultured Staph since she was very young. We think she picked it up while she was in the NICU, and we now only treat the Staph with antibiotics if it becomes symptomatic. I really do think this is just another bout with Staph, but only the culture results with determine that. So with the cough and antibiotics, comes increased Xopenex and vest time everyday. She never seems to mind the extra half hour everyday as long as she gets to watch Caillou or Mickey Mouse Clubhouse on TV!
I will be calling to make an appointment with her pulmonologist this week to talk about getting her allergy tested for pet dander,and then I'll be giving Santa the 'okay' for a kitten. It is so nice that her pediatric pulmonologist is also an allergy and asthma specialist! How convenient for us!
...And this is the part of the blog post where I gush about how wonderfully lucky I am to have such an amazing little girl to call my daughter...
I have never been one to be squeamish about medical procedures, and really, I'm kinda fascinated by them (that's one of the reasons why I'm going to school to be a nurse, I suppose!) I am really go with the flow and matter-of-fact about all medical processes when I talk to Lucy about them, like it's no big deal. I buy children's Body Parts books and use LOTS of dialog to help explain what our body looks like on the inside, and what our parts are supposed to do when functioning correctly.
In short, I have tried to desensitize Lucy at an early age to the 'blood and guts' we have in our body so that when it comes to actually seeing them in real life (not in a book) she is excited to see it!
When I told her that she would be getting her blood taken out of her arm so they can test it for the 'monkey vitamins' that she takes in the morning, she was so excited. After over an hour of waiting in the pediatric lab waiting room, we finally got called in by the phlebotomist. The woman looked at us and Lucy's chart and realized that she was only 2 years old, and called in another technician to help hold her down. Little did they know, Lucy doesn't need any holding, just a clear view of the blood vial!
After a bit of arguing (she wanted to sit all by herself, but couldn't reach the table to set her arm flat), she finally got up onto my lap. I told her to instruct the lady which arm she wanted blood taken from, and she said, "This one" while pointing to her left arm. I explained everything as it was happening while gently holding her right hand. I told Lucy that the lady was tying the tourniquet around her upper arm, and that it will feel really tight. She said, "Okay. mommy." When the needle lady finally felt a vein that was suitable, she asked me if I should hold her a bit tighter. I told her 'no' and that she would be just fine if we only explain everything. No surprises. The other woman, who brought in to be a 'helper,' held Lucy's left arm to keep it steady. I told Lucy that it might hurt for just a second when they stuck the needle in, and then we would be able to see her blood go through the tube!
She never made a peep, mouth open gawking, as she watched the needle go into her arm. The lady adjusted the needle only one time until she found the vein, and then Lucy watched in awe as the blood went through the tube and into the vial. I talked to her the entire time about what color her blood was, how cool it looked, and what they were going to do with it when they were done. The only thing she was worried about was whether or not she was going to get her stickers when it was all over! The two phlebotomists declared that Lucy was the easiest two year old that they had ever taken blood from, and I declared that she was the coolest because she loved looking at her own blood!
Lucy was over the moon when they gave her TWO stickers and a miniature deck of Disney princess playing cards! And with that, we stand in the face of cystic fibrosis, and say, "Bring it! Lucy can handle it!"
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GO LUCY! I'm so proud of you both, strong and capable ladies!
ReplyDeleteOh my GOODNESS!!! AMAZING! I have always been one of those 'squeemish' people you talked about, and unfortunately I think I've rubbed off on my daughter :( You definitely just gave me the drive to change that about BOTH of us! I'm anxious to give your ideas a try!
ReplyDeleteWow, what an awesome story and awesome little girl. It surely has paid off to take teach her all the ins and out of what to expect! Thanks for sharing!
ReplyDeleteWe had clinic today too! (on the other side of the world). It is so good that Lucy wants to know what is going on. She will grow up to be very confident within her own body, and take charge of her health!!
ReplyDeleteWay to go Lucy, she'd put a lot of adults to shame!!
ReplyDeleteI must admit since we have started explaining everything to Sophie she is much better at having things done. It's unfortunate she had a few bad experiences when younger that have become deep rooted though.
That a wonderful blood draw story. Even better than Victoria's two-year-old blood draw. She looked at it and said 'ow'. Didn't make a sound when they had to change arms. Sadly this year was awful. Hopefully Lucy'll keep on being fascinated!
ReplyDeleteGod bless and keep you on this journey Kacie!!
ReplyDeleteIt's a tough road sounds like!! I use the same method for the difficult times in my life..minimization or desensitizing..your Lucy sounds amazing!!!
Lucy is awesome and has a great Mommy, too. :)
ReplyDeleteKacie,
ReplyDeleteHave missed reading your blog. Am hoping so much that you and Lucy are both well.
Please update us when you have time as you are such a great writer.
Blood Schmlood.
ReplyDeleteSo cool that your jr. phlebotomist in training is so cool with the pre-clinic jab(s). I may have to try that tactic (monkey vitamin analysis) with our two. Yearly is still 12 weeks away and I'm already stressed just thinking about the lab visit.
YowZahhhhh!
Great Post. It can be very useful for patients who need it.
ReplyDelete