My Sweet arts class

It was another fun morning at our Sweetarts music and art class! Kelsie is getting more comfortable but still a little shy and reserved. She walks up to the teacher with the other kids but then comes back to me. And she is starting to try to hit the drum or clap her hands during music time but still not quite there yet.

She likes the craft portion the best.

Although since we have been home, she keeps talking about the singing/dancing part. During the singing, they will say "clap, clap, knees...clap, clap, knees...clap, clap, NOSE!" at which point you are supposed to change it up and touch your nose. So kelsie keeps saying, nose...eyes...face... head...toes and touching each respective part as if we were doing the song.

I think this class is a great way for Kelsie to socialize with other kids and get to be involved in great age and developmentally appropriate music/art activities. And I get to participate along with her so its a great time for us to spend together doing something fun outside of home.

 

 

 

This was taken at last week's class by a photographer for the chapelboro website

My duty, my desire

And, she's down for a nap! While I love my days at home with Kelsie, I have to admit, I do look forward to nap time! It is often the only time I sit down all day, at least the only time I sit down when I'm not constantly giving all my attention to her - doing her PT/breathing treatments, trying to get her to eat, engaging her in play or art activities (aka keeping her from eating the crayons/paint/etc).

Being a mom is the greatest and most amazing job in the world. It is a joy beyond any other to conceive a child, to carry her in your womb and deliver her into this world, to see that precious and perfect little person for the first time, to nurture her and celebrate every new movement, to watch her grow, reach new milestones, to see her personality evolve, to help her learn, to see her change every day, to see the joy in her heart when she experiences something new and exciting, and to relish in the sound of her laughter, her smiling face, her hugs and kisses, and her unconditional love for you.

But being a mother is also extremely challenging and overwhelming at times. It means being in constant movement, alert to their every need - the feedings, the dirty diapers, the endless calls for attention, cleaning up after messes, the toys everywhere, the laundry, the food on the floor that you worked tirelessly to prepare, the need to provide healthy, well balanced meals, to make sure they eat enough and grow well, to provide constant stimulation to help them develop, to take them places to experience new things, to listen to their cries and protests, to witness their tantrums and outright disobedience, to try to discipline the right way, to try to always hold it together, to show them you love them more than anything, to not yell or show your frustrations, to never have time for yourself, to always worry about their well-being, to feel the unspoken critiques from family/friends about the way you are raising your child, to fear you aren't doing enough...the list goes on and on. 

For me, I have also been dealt with the responsibility of caring for a child with CF. This disease truly requires management all day, every day. With every snack, every feeding, every juice or milk cup, there are meds to be given or supplements to be added. When we go out, I have to make sure I have her meds, her applesauce, her Miralax in her juice, extra diapers/clothes in case she has a blowout, hand sanitizers, antibacterial wipes, Pediasure in her milk, enough snacks, and extra food to have as choices in case she is being picky because the pressure of her getting enough fat/calories is so high. I have to be in constant alert to changes in her appetite and bowel movements, new symptoms of respiratory illness and pay attention to her fat, caloric, salt and fluid intake. I have to make sure we get her PT in every day and get her breathing treatments ready every morning. Even when there is a lot planned for the day, I have to try to figure out how to get those 2 30 minute PT/breathing treatment sessions in. And after I clean up dinner dishes every night, I have to set everything up and thoroughly wash/sanitize all of her nebulizer accessories.  And underneath all of the day to day tasks, there is the unsettling reality that this is constant and will only become more and more challenging as the years go on. You know that your time with the greatest love you have ever felt, the light of your life, your precious child, is likely one day going to be cut short because of this illness. So you just feel that weight on your heart...daily. No matter what people say or how much hope or faith you have, you just can't shake the underlying fear of when that day might come. You don't let it consume you. But while you continue to live each day of your life, you know its always there in the back of your mind...

My job also adds another dimension to my life as a mother. In my opinion, being a mother is a full time job in and of itself. Every mother is faced with the constant demands of raising a child and maintaining a home, whether she works full time, stays at home with her kids, or works part time. I am currently working two days a week at one job and 1 night a week at another job. This has been a pretty good balance for me. It is such a blessing to have a job and I love what I do. Nursing is very close to my heart and it is definitely a rewarding career to work as a nurse practitioner and take care of children. I often see my job as a bit of a break but it can be demanding as well. I always have work to bring home but with all the other demands of motherhood, it is often hard to find the time for it. When you add to it the responsibilities of trying to be a good wife, housekeeper, and cook, it can be a lot for a woman to bear sometimes.

But regardless of how demanding it is to be a mom, raise a toddler, care for a child with a chronic illness, and work... I wouldn't trade this life for anything...nothing I had before, and nothing I could have without it. Being a mother is a gift, a responsibility, and a choice!  I know God designed me for this very role. In this season of my life, I feel my greatest responsibility is to be the best mother I can be - to train my child, to teach her, to love her, to nurture her, to give her the best care possible, to guide her and lead her, to enjoy her and relish in her every delight, to show her the beauty of the world and all it has to offer and to help her discover and explore who God has created her to be. It is both my duty and my desire. I wouldn't have it any other way. I love that little girl with every ounce of my being and I will do everything I can to make sure she feels that love every single day.

And for the pressures of life, I will give them to the Lord. I will rest in his abundant love and grace and find peace in his faithfulness. Instead of complaining of the tasks in front of me, I will count them as blessings. Blessed that I have this precious child to care for in the first place, that I have a home to clean, and food to cook. I will give thanks for my supportive husband who works hard to provide for our family and for the job that allows me to use my knowledge and my talents while serving the community. I will be thankful for my family who is always graciously willing to help when we need them. I will think less about how I measure up according to others' perceptions of me and focus more on how God sees me and what I am doing for His glory. I will trust God with Kelsie's future and hand my fears over to Him. Most of all, I will embrace my duties with thanksgiving and positivity and praise God for this crazy, but beautiful life I have before me.

Mysterious fever

Kelsie kept a fever all night despite me alternating Tylenol and Ibuprofen every 3 hours. They gave her a high dose of Ibuprofen at the ER which broke the fever (it got down to 98.5) but when she woke up from her nap it went right back up again. She had Ibuprofen at 11:30am at the ER, I gave her Tylenol at 4:30 but at 6:00p, her fever was up to 104.1 again. She was still acting ok, trying to play and acting herself for the most part, but the acetaminophen was doing nothing to bring down her temp. So I gave her another dose of Ibuprofen at 5:30pm and around 8:30 it was 99.5. But by 10:00, it was back up to 101 and stayed between 100.5-102.5 all night. As a PNP who sees kids with fever all the time, I usually don't get too excited about fever. I usually don't even treat Kelsie's fevers unless they get above 102 or she is acting sick. But after what happened yesterday, I was a little more on alert last night. I actually set my alarm so I could make sure her fever wasn't getting too high.  She still ate a good dinner last night, and slept well (except for me waking her up to give her medicine). But this morning, she is still sleeping as of 9:10am and that is not like her. She is due for more medicine but I checked her temperature and it was 100.0, so I'm just going to let her sleep it off.

As to what is causing this, we're still not sure. She still doesn't really have any symptoms. She coughed 3 times since being home from the ER but that could just be her typical occasional reflux cough. A UTI is still a possibility because they didn't check her urine at the ER. Since it was just day one of the fever, they didn't want to traumatize her with a catherization and I didn't disagree. However, since it has been almost 24 hours since this started and we still don't really have any symptoms to clue us in to the cause of this fever, I still want to rule out a UTI. So I went by her doctor's office last night to pick up a urine specimen cup and I am going to try to get her to pee in the potty for me when she wakes up (they gave me a hat for the toilet too so I can catch it). The other possibility is an ear infection. The resident looked in her ear yesterday and thought it looked a little red but when I looked, I thought it looked ok and I definitely wouldn't have treated that as an ear infection. (They didn't think it was bad enough to treat yesterday either). But I saw her sticking her finger in her ear last night and checked again and it definitely looked worse in the left ear. I will check again this morning and may have her doctor take a look when I go to drop off her urine. She definitely isn't acting like a kid with an ear infection (still eating well, not fussy, not complaining of pain, not waking up crying, no cold symptoms etc), so even if it still looks worse this morning, I'm not so sure that I would even treat it with an antibiotic yet as it could still just be viral.

They gave me Tamiflu and wanted me to start that even though her flu test was negative. If by some slim chance this was actually a false negative and she did have the flu, it could be more serious for her because she has CF. But I just really don't think that is what this is. She doesn't look or act like all the other kids I've seen with flu this year. And Tamiflu can cause a lot of abdominal discomfort and GI upset, so it could make her feel worse. I have actually taken it before and it made me throw up after the first couple of doses. So I didn't give it to her last night. I didn't know how it would affect her and I didn't want to risk her having a tummy ache and vomiting during sleep. I still haven't decided if I am going to give it to her this morning or not. Ahhh its both a blessing and a curse to be both a pediatric health care provider and a mother! My mind teeter totters all the time on how to care for my child's many healthcare needs!

Scary ER visit.

What a day! It started out like a typical Monday. We had breakfast, played with toys, I washed some dishes, then packed up our bag for a trip to Target later. I changed a dirty diaper, then changed Kelsie's clothes, did her PT and her breathing treatment and was putting Kelsie's shoes on when I noticed she felt warm. We were about to leave to go to Target and Kelsie was waiting at the door saying "bye-bye?" and I said "yes, we are going bye bye but first we have to put on your shoes". I picked her up and was putting on her sheos and she was complaining that they were "tight". And they were looking like they might be getting too small so we went upstairs to get some more shoes. And she was still whining "tight...tight". Not crying, just kind of whining. And then she just laid her head down and I noticed she felt warm. And her face just looked different, weak all of a sudden. So I ran back upstairs to get the thermometer and it read 103.4. And I just held her and she laid her head back and closed her eyes. She could barely hold them open. She went from running around just a few minutes earlier to falling asleep in my arms. I got her to sit up and take some Tylenol and called Nathan. I kept checking her temp and it was going up and up and up ...103.8, then 104.7, then 105.5... I wiped her down with cool wet rags but that wasn't helping. I was thinking this is probably just a virus, I just need to get her temp from getting too high. And once it got over 105 I knew I was taking her somewhere.  I was cradling her in my arms about to leave when she vomited. So we went back up to change and I laid her on my bed. Her temp was up to 105.7 or 8 and by this point, I was really feeling nervous. This was literally all within a 10 minute period of time. Nathan knows that as a mom, I can lose my sense of nursing judgment so he always asks me, what would you do if this was your patient and the mom called in saying their temp was that high. And I said I would tell them to go to the ER. I am a firm believe in NOT over-using the ER but this time, I felt like it was warranted. And so thats where we went. Prior to that I had called her primary care doctor and left a message with her nurse. By the time she called me back, we were already in the ER. She left a message saying I hope this means that you have already left for the ER because that is where you need to be.

This is how she looked before going to the ER...not really sleeping, but couldn't keep her eyes open.

At the ER, she remained still in my arms for a while, and didn't say anything for a while, until her fever started coming down. And then she ate a whole baggie of Cheerios and drank her Gatorade.
The doctor said she heard some crackles in her right lung so she did a chest Xray just to make sure their wasn't any pneumonia. It was normal. They also did a flu test but discharged us before the results even came back. Her pulmonologist came down to see her and recommended giving her Tamiflu anyway. (Thats the medicine used to treat flu). I checked once we got home and the flu test is negative. They think this is just a virus so we will see how it plays out. It was a scary morning though seeing how high her fever went and how sick she was acting! But she has perked up now. She just woke up from her nap and is happy and playing at present.

Once the fever came down, she was gobbling up some Cheerios. But then she fell asleep again while at the ER, even though the doctors were talking in the room...so not like her!

 

 

Kisses goodnight

These are the days I will cherish forever. I know that with all certainty. Putting Kelsie to bed is such a special time for me. I love the cuddles, the story time, the bedtime prayers and the kisses goodnight. Every night isn't as tranquil as that sounds but it's all the same to me. The giggles and tickles, the squirms, the run away and chase mes, and yes, even the protesting cries--they are all special. Even when she is in a bad mood and fighting going to bed, she still gets quiet when I say it's time for our prayer. She listens intently to every word I say. As my eyes are closed in prayer, she rubs my face but eventually brings her hands together as well. And as I end, she echoes my ending with an "amen" of her own. We have our special mommy daughter talks and then give hugs and kisses. Tonight, she gave the best Eskimo kisses and didn't want to stop. I relished that moment and was conscious of the fact that I wanted to etch it in my brain and never forget it. She giggled as I walked out of the room blowing her another kiss, then throwing my arms out as wide as they could go saying "I love you soooooo much!!" She laughed and repeated, "maaaaa much!" Then said "night night!"

But, still, before I go to bed, I can't resist another kiss goodnight. This time while she's sleeping. And I have to say, this is one of my favorite moments of the day. Staring at the face of your child while they sleep is such a precious moment. I kiss her sweet face over and over and just thank God for giving me such an amazing gift. Yes, I know without a doubt, I am going to miss these days like crazy when she grows up!

Art

Kelsie is getting more into coloring, painting, craft projects etc. I have been doing some sort of craft time with her on a regular basis but she is now ASKING to do it. "Paint? Paint? Paint?" She got several painting/coloring sets for Christmas so I'm sure that has sparked the increased interest, that and she's just getting to that age. I also took her to 2 art/music classes call "My Sweetarts" in December. The individual classes were called "Little Elves Workshop" and they made holiday themed crafts. She absolutely loved it! And I did too! They had several craft stations set up with different activities so the kids could move from table to table as they liked. She got to bring home several handmade crafts and got to show off her work to her daddy which made her feel very proud! :) I signed her up for the winter session class that will start this Friday and go through March. I'm even thinking of doing an art party for her 2nd birthday (thanks to my aunt Ana for the idea!)

The painting was going so well until I got distracted, turned around and found her eating it!

Cutting those eyes, knowing she did something wrong!

Showing me her messy hands!



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Cart for PT machine and nebulizer

We got a new cart to hold Kelsie's PT vest and nebulizer! Its an audio-visual cart like we had in our classrooms at school for the projector. It has a power strip on the back that we can plug the machines into, so all we have to do is plug in the one cord from the cart and then start the machines. We are very excited because now we can just roll them away in between uses and they don't have to sit next to our couch all the time! The PT machine is really heavy so its not practical to pick it up and move it all the time, and the cords were always in the way. Since we use it twice a day every day, it makes sense to keep them nearby.  This cart helps us easily access it but also gives us a convenient way to roll it away and store it. We cleaned out a space in the downstairs coat closet so we just push it in there after we finish PT and its working perfectly! 

Health update

1 - Appetite...back to being an issue. She started eating well again for maybe a a week, but is now refusing food again. She'll eat oatmeal in the morning consistently (if she's distracted by TV), but other than that, her intake has become pretty minimal again. Now that we've started Pediasure, she will drink that without fail, but I have to be careful not to give it to her too early during mealtime or thats all she'll take. For a child who never liked much milk, she definitely asks for it a lot now! She's getting about 2 of those a day. I usually just mix 1/2 bottle of Pediasure with whole milk to give her at mealtime and she gets some at snack too. If she doesn't eat her food, I keep trying to find something that she will eat and if she still refuses, I just give her more Pediasure. It has all the nutrition she needs for a full meal so if she doesn't eat, I at least feel better that she is still getting nourishment through the Pediasure to help fill in the gaps.

2 - Constipation - this has been difficult to manage with her. Once she gets backed up, its always very difficult to get her back on a good routine. I did the 1 cap a day daily until she was having consistent soft/loose stools then I backed down to 1/2 cap but as soon as I back down, it seems she gets constipated again within a day or 2. Her stools are not hard so I don't think she's having residual old stool, its just more formed and she's only passing a small small amt. Big belly, and not eating. So makes me think constipation again. ?

3 - Reflux - We have obviously always known this was a problem for her but I never actually saw her refluxing since she was a baby until recently. Even though we have restarted the Zantac, we are definitely noticing her burp things up more than we ever have.

4 - Cough - I got sick with a virus about 2 weeks ago. I had the worst sore throat of my life, was in urgent care on Christmas Eve and took a Z-pack, and thought for sure Kelsie would get it. It led to the classic congestion/cough but was never terrible however I am still coughing some. I definitely think Kelsie has had a touch of it and even wondered if she could have had a sore throat which might explain her lack of desire to eat...but she seems to be passing it pretty well. She had a slight elevation in her temp last Sat (99.8), some nasal congestion, and coughing both overnight and during the day. But that seems to be resolving!! :) Keeping fingers crossed! Cough is way less, maybe once or twice a day, none at night. No more congestion. She is overall more cranky/tired so I think she has felt bad from something but hopefully improving.

5 - Hypertonic saline! We waited until after Christmas to start it (just with all the traveling, thought it would be easiest) and we have been able to do it 15 min twice a day consistently since we started it on 12/29. She is doing super! I am soo soo proud of her! The doctor told us she would be happy if we could get it in just 4x a week at first, expecting that it may take 6 months before she got to the goal of 15 min twice daily. But we're already there!  The first night she fought it, we bribed her with a prize and ever since she just seems to get it and understand. She's not fighting anymore, and will even help hold it. I feel this is likely responsible for how well she has done getting through this little cold. It makes her cough but that is a good thing because the point of it is to help her clear out secretions.

Love you!

Kelsie has just started saying love you back to me and I can't even express how sweet it is to hear that! And when I ask how much does mommy love you, she throws her arms back really wide and says "maaa much!" (aka SOOOO MUCH!). "And how much do you love mommy?" ...."maaa much!" :)

No words could ever express how in love I am with that little girl. I could kiss her all day. Hold her and snuggle and rub her pretty little head as long as she would let me. Nothing can compare. When I go to kiss her goodnight before I go to bed, sometimes I can hardly pull myself away. Sitting next to her bed staring at her perfect and peaceful little face just makes my heart melt and I feel so incredibly blessed that she is mine. I thank God for that precious little girl.

Breathing treatments begin!

We just started Kelsie's first breathing treatment last night, hypertonic saline.  Her doctor has talked about doing it for a while as a preventative measure but since she never had any respiratory symptoms, there was never any real indication to start it. Then she got that illness with the cough that never wanted to go away, so she felt it was a good time to start.

The first one was kind of rough. For both of us. She didn't like us putting that mask up to her face and I didn't like the fact that I had to. I felt full of tears inside thinking "this is permanent." I give breathing treatments to my patients and their parents have to give them at home too, but for them, its temporary or just when needed. For Kelsie, we have to do this EVERY DAY. SHE is going to have to do this every day! Its both a blessing and a curse. I'm so thankful this exists and that it will hopefully prevent her from getting as many lung infections and untimately prolong her life. But it still makes me sad that I have to make her do this every day. I will not waiver though. It too, like everything else will become part of our daily routine. We will figure out how to add this piece into our lives, embrace it, and thank God we have it available to keep our little girl healthy!

Kelsie got a baby doll after her first treatment. We told her she would get a prize if she did it so I had to follow through. I had a baby doll I was going to give her for Christmas but decided to return...needless to say, I decided to go ahead and give it to her as her reward for doing the breathing treatment. I guess we will need to scale down the prize value if this is going to be a daily routine!! :)

Weight check

I had to go to the hospital yesterday to pick up Kelsie's nebulizer for her new breathing treatments so I just took her with me and put her on the scale to see if she had gained any weight. And to my surprise, she has gained almost a full pound in just 1 week! (And she has been pooping like crazy so she had to have lost a lot of that extra weight during the past week as well.) She weighed 27lbs 6oz!

It was really cold and windy too so I had her all bundled up and had to snap a few pictures of her in her wool coat! (Which I got at a consignment sale for $3!)

Learning new words

Kelsie makes me laugh everyday with the funny things she tries to say. Her language really started coming out over the summer and she has been gaining new words every day. She will also repeat just about anything.

Lately we hear alot of:
Mine!
stop ("dop", "bahp" or other variations)
arn-doof (orange juice) - We hear arn-doof or just "doof" every night after she goes to bed and every morning when she is ready to get up! And she yells it.
Yay! (when she is excited or proud of something)
Woowww!
NO-NO!
toys
walk (she will come up and grab your hand and say "walk", this means she wants you to come play with her)
baby (or just "bay")
Elmo
"Beht-Beat" (Fresh Beat) - her favorite TV show. This is our go to for distractions during chest PT or mealtime or to calm her down if we are out and she is fussy.
"Moan" for phone
Mommy and Daddy of course!

Other words: Mommy, Daddy,  "Keh-sie" (Kelsie), apa (grandpa), mehma (grandma), "Valulwee", "Dew", Nana, papaw, wahwah (Mamaw Roberts), Will, Ava, Keh-kie (Kelly), eat, doggie,  apple, pear, hairbow, ball, book, baby, Alright (or just right), now, tree, star, eyes, nose, arm, hand, feet, toes, beh-ba(belly button), "bupp" (her bottom), hair, ears, eyebrow, throat, teeth, neck, earrings, what?, fit (when she is playing with blocks or shapes), "Kah-ket" (chocolate), bread, bird, "fovers" (covers), mess, wash, bath, "fues" (shoes), boots, shirt, pants, socks, chair, light, poop, peepee, hat, cold, hot, seat, car, off, on, stairs, march, "te-te" (TV), Tarheels, Ramses, ah-pack (wolfpack), bed, night-night, pizza, pickle, cheese, milk, fall, fell, dizzy, help, toys, Ah-Clause (Santa Clause), Reindeer, stocking, tirsty (thirsty), oh-k!, Jesus, angel, shy, house, flowers, more, brush (toothbrush), oopsie, wiggle, blocks, wet, food, pictures, watch, cook, duwl-dee (dirty), moon, macaroni, Max and Ruby (mat and ru-ree), spoon, fork, too, heavy, bye, c'mon, ummmm (when she is thinking about something), num-num, (yum-yum), nummy (yummy), vest, broke, laugh, trash...and I'm sure there are more.

She is starting to try to put together words but doesnt have many 2 word phrases yet: help me and all gone are the only 2 I can think of off the top of my head.

She tries to count but its always the same: "two...nine..." :) (no idea why she picked that up)

When she falls or hits something and gets hurt, she will go back to it and yell "NO NO" like she is getting on to it. I started that...I did the same thing when trying to console her one time after she fell.

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Follow-up

We went back today for Kelsie's follow up appointment. She has been doing well and her cough has essentially gone away. The cultures did not grow any bacteria or viruses so NO INFECTION in the lungs. Very happy about that! So we are now able to stop the antibiotic.

Her weight was up slightly from last week - like 2 oz - but it is still down from where she was 2 months ago so we are going to have to work hard to get that back up. She weighed 26 lbs 9oz today and was 26lbs 13oz on Oct 13th. She's still at or slightly above the 50th% weight for height and they like to keep their CF kids from falling below the 50th%. Kelsie is still eating really poorly but we think that might be coming from constipation so we are going to ramp up the Miralax a little more and make sure we are getting everything cleaned out. We also had long discussions with the nutritionists about how to manage her meals/snacks, new ideas for getting her to eat, and implementing supplements such as Pediasure. She has hit a picky phase of eating which is typical for all toddlers, but with her, we have to more aggressive about it. The Pediasure will help fill in the gaps and give her 100% of what she needs in a meal. So if she goes a whole meal and refues to eat, we can rest a little easier knowing that she is getting the fat and protein she needs from the Pediasure. We are also going to keep trying things like distraction to get her to eat, adding more fat to her diet by adding butter and/or heavy cream where we can, and giving less juice (low calorie beverages) and more milk based drinks (even if that means giving an extra enzyme when her meal or snack dose has ran out).

We are also starting a new therapy called hypertonic saline. This is like really salty water that she will breathe in through a mask for 15 minutes twice a day during PT. they did a "challenge" to make sure she could tolerate it. She did ok in the beginning but only made it a couple minutes before she started pulling it off and fighting it. It causes the airways to spasm causing her to cough. So she has to take albuterol first to keep her airways open so her breathing won't be compromised by the spasms. The salty solution helps balance out the sodium chloride and water transfer which is the foundational problem of CF. This has been shown to be a beneficial preventative measure in people with CF by helping to clear secretions from the lungs. I don't think it took Kelsie long to realize that she doesn't like this new therapy. It causes the nose and throat to burn and makes you cough. Doesn't sound too comfortable to me! They say it will take some time for her to get used to it and we will have to slowly work up to our goal of 15 minutes twice a day.

HOME!

From yesterday:

What a whirlwind of a day! We went in this morning with so many questions and uncertainties. But are thankfully back home now.

Her PFTs (pulmonary function test) looked great, as good or better than the last! Which was great news. There did not appear to be any obstruction in her air movement. They also give Albuterol during that procedure to see if there is any improvement by opening up airways. There wasn't which is a good thing suggesting that things are working like they should at baseline. There was one number that was slightly worse, suggesting some air trapping, but was still within normal limits.

The bronchoscopy showed no secretions in her left lung but did find some white secretions in the right lung - upper lobe and lower lobe. There was not a significant amount and the secretions were not yellow or green, both good signs. They also found her airways to be very irritated and inflamed. There a few things that could be causing this. It could be reflux, could be viral, or could be something like asthma. They also looked in her nose and saw that her adenoids were really large.

The doctor said based on what they saw, she did not see any strong indication to proceed with the IV antibiotics today. But still gave us the option. She said the most aggressive approach would be to go ahead and do the PICC line, start the IV antibiotics and make sure we were getting a head start on it if it was a bacterial infection causing the secretions in her lungs - all with a hope to be done with it by Christmas. But the other option was to wait and see what the cultures show, knowing that if they do grow bacteria, we would have to go back in for the IV antibiotics - potentially putting us in the hospital over Christmas. We took the chance and decided not to put in the PICC line and admit her, thinking this is unlikely to be something that needs IV antibiotics. And if by chance it does grow something that requires strong IV antibiotics, then we will deal with whatever we have to do when the time comes, even if it is over Christmas. I just didn't want to put her through everything that goes along with a hospital admission without knowing it was absolutely necessary.

We are also adding some new treatments to help with the information they found during the bronch. So this is the plan from here:

Restart Zantac (medication for reflux) - we started this medication when Kelsie was only a month old but have tried stopping it several times. She also takes another medication for reflux but the Zantac was added as an adjunct. In the past, each time we have stopped the medication, I have noticed her to start coughing. We last stopped it in September, she then got sick with the cough the first of October. So we never had a chance to see how she would respond to being off the Zantac. The doctor also said they tend to see secretions in the right lung when a person has chronic reflux. So I really feel like this is the issue. Reflux alsos causes chronic inflammation in the airways, so thats where that could be coming from as well.

Restart Flonase (nasal steroid spray) and increase to twice a day - this helps with the large adenoids, inflammation in the nose and nasal congestion.

Start hypertonic saline  - we go back next week to do this "challenge". This is a breathing treatment and it helps her clear out secretions in her lungs. Some times kids do not tolerate well so they like to do a trial in the hospital setting in case she has problems with it. If she does fine, then we will start doing those treatments at home on a daily basis indefinitely.

Continue Bactrim - She still has a little over a week left on this antibiotic so we are going to continue doing that to clear up any infection that is left.

Start nutritional supplements - She had lost weight since her last appointment (about 1/2lb), which was concerning to all of us. Kids with CF are at an increased risk of nutritional deficiencies since they do not absorb fat/protein on their own. She has not been eating much over the past couple of months and has been really picky. Basically, she is eating like a 2 year old, but we can't let her do that. I refuse to get into food battles making her eat because I know that only makes them want to eat less. When you do that, mealtime becomes more of a battleground and less of an enjoyable experience. It is really important that she eats, and that she eats high fat/high protein meals and snacks. But at this stage, its hard to find many things that she will eat alot of. She loves cheese and would eat that at every meal if you let her. I don't like doing that because she still needs a variety of other foods, plus cheese is very constipating and that is another problem for her. Yes, we can treat it with Miralax, but she still has to eat something besides cheese! So for now, we are starting nutritional supplements like Pediasure and Boost. I am also going to look into some new ways to increase the fat content in her food, like using whole milk Greek yogurt for example. Its definitely time consuming not only to find some recipes, shop for the food, make it, and then try one thing after the next during mealtime before you find something she will eat. I think every mom with a toddler has frustrations trying to get their kid to eat, but mine are taken to a whole new level because her nutritional needs are so much higher than the average kid. So I HAVE to figure out how to get her to eat again!

Reassess next week -  We go back next Thursday and the doctor will go over her culture results, check up on the progress of her cough and we will go from there. Hopefully, things will be at least somewhat improved. We do not expect the cultures to grow anything significant but if they do, she will have to get the PICC line put in and be admitted to the hospital after all. But we will continue to pray that doesn't happen!

After coming home - Saturday 12/8
Kelsie is doing really well today. She was really tired after getting home yesterday and unsteady on her feet but otherwise seemed to be back to her usual self. She wanted to lie down a lot, and would snuggle with me on the couch which was unusual for her but expected given what she went through yesterday. She drank a lot of fluids after coming and ate a fairly good dinner last night. She had a fever but they told us to expect that. They wash out the airways with sterile salt water but some of it gets left behind so the body recognizes that as foreign and raises the temperature to try to take care of it. That extra fluid left behind in her lungs also causes a lot of coughing so we've definitely been hearing quite a bit of that. And she is a little extra tired today. Still happy, just sleeping a little more but that will be good for her.

This is in the PFT lab right before falling asleep for the test. They give her oral sedation medicine for this procedure. Its a lot of volume and yucky but I got it all in her. She then sat in my arms watching Fresh Beat Band on the iPad until she fell asleep. 

 

 This was after the bronchoscopy. It took her a long time to wake up from the anesthesia. She first came out of it coughing like crazy, gagging, and very agitated. I would kiss her and rock her and she would calm down, go back to sleep, and then that mucous would come up and gag her and she would get agitated again. She finally went back to a deep sleep and we had to get out a cold wet washcloth to wake her up. I was happy to have it all over with and enjoying the cuddle time! <3

 

Here we are heading home! Getting some juice and puffs after being NPO all day!



 

Finally back home! Some strawberry milk and peanut butter crackers. Mmmm.

Good to be home! 

 

 

Taking it easy with mommy! So glad we got to spend our evening like that and not in a hospital room! Thank you God!

What is necessary

When Kelsie was diagnosed with Cystic Fibrosis, I knew there would come a day where she would be sick. I knew there would likely be frequent respiratory infections and hospitalizations. But of course, I didn't know when to expect them. At first, we expected the worse. But little by little, those anxieties were put aside as we just enjoyed each day with our perfectly normal and healthy little girl. She has been exceptionally healthy and has only had 3 colds her whole life - which in my line of work in pediatric primary care, I know how rare that is. So I think we even started to think at some point, "maybe she is just going to be one of those CF kids who have little respiratory involvement." She literally NEVER coughed until this infection started 8 weeks ago. But now, here we are, her first cough and she is getting a bronch and facing possible admission. And she isn't even 2 yet. I still can't believe it. I know some kids with CF don't experience their first admission until they are teenagers. Others are infants. I always thought, and truly believed, that we would at least make it until school age before Kelsie got admitted. And we still don't know what is going to happen tomorrow, so I'm still going to hope and pray that happens!

I just hate putting my child through these scary procedures. She is too young to understand why we have to do this. I don't want her to hurt and I don't want her to feel scared. I feel so sad that she has to go through this and that I can't stop it. I have done everything I can to avoid this and I still don't know that I have made the right decision. I didn't want to overreact and make her go through all of this without knowing it was absolutely necessary. But I didn't want to blow it off either and risk a subtle infection causing damage to her lungs. I felt completely torn. But then when she woke up this morning coughing much worse than she has been, I knew it was time. I realized it was now necessary and I couldn't prolong it any longer. The realization hit me hard. That no matter how well I take care of her and do exactly like I am supposed to, and no matter how closely I monitor her every symptom, I just cannot prevent her getting sick. Its simply the nature of the disease. I have to accept it. I know its not that bad right now and in the grand scheme of things, things could be a lot worse. But its the first time we are having to go through this and its our first real confrontation with her disease. So its hard. Hard to accept and hard to deal with. But I will muster up the strength to make it through it and will do all I can to make sure it is the best experience for her it can possibly be. I will be right there with her through it all and will make it as fun as possible. We will make it through it regardless of what happens. God will give me the strength to be my best for her and He will protect her. When I can't be there during the procedure, He will be the One holding her hand. And I have to trust that He has a purpose in all of this.

First bronchoscopy

CF seems to be rearing its ugly head. Kelsie has now had a cough for 8 weeks now. It is also the first cough she has ever had, but she just can't seem to get over it. It started out with a fever and a couple of coughs here and there. That went on for about a week and then her doctor decided to start her on and antibiotic (Augmentin) for 20 days. She continued to cough the entire time and the cough even worsened during that time. We saw the doctor again about halfway through that course of antibiotics and she thought she looked great and just suspected that she was hit with 2 respiratory viruses back to back. She advised we continue with the antibiotic regimen and also started a nasal spray to help with any nasal congestion/allergic etiology. We did that for a couple of weeks, but the cough persisted. The amount has varied but there definitely hasn't been a day without cough since this all started.

So about a week and a half ago, I talked to her doctor about her peristant cough and she wanted to start a different antibiotic and talked about the possibility of doing a bronchoscopy and admitting her if the cough did not improve while taking the antibiotic. The cough has since been waxing and waning. Some days the cough is very minimal (maybe 1-2x), but other days it has been much more. The cough seemed to be better overall, especially in the quality (not as wet and junky). It was better over the weekend and I thought it was going away, but 2 days ago she coughed 12 times. Then only 7x yesterday. We talked to her doctor last night and she said she was still on the fence about whether or not to proceed with the bronch. After much discussion, we decided to hold off on the bronch, and do hyptertonic saline (an inhaled therapy) instead. This is like really salty water that she would breathe in through a breathing machine and it would help her cough out secretions. Her doctor and I both thought this was a good middle ground and a good option to avoid the more invasive procedures. We also thought it would give this cough more time to settle out if it were viral or the result of sinus drainage. However, this morning she woke up with a lot of cough again. She has probably coughed 25x today and thats the most I've heard in several weeks. :/ It also sounds junky again too and has almost gagged her a few times. I broke down a couple of times realizing that this bronchoscopy procedure is now inevitable and necessary to make sure infection is not growing in her lungs.

Prior to the bronch, she will have PFTs (pulmonary function test) which measures how well her lungs are working. She has had two of these before and she will get these routinely for the rest of her life. Since she is still too young to breathe on demand and show how hard she can breathe, they have to sedate her for this test, put her in a special box, force air in, and measure how well her lungs are doing. This isn't a bad test, its just the sedation that is the hardest part. So she will have this in the morning around 9am, then while she is still sedated, they will move her to the bronch lab where they will put her into an even deeper sleep, but she will still be breathing on her own.  During the bronchoscopy, they will go down and look into her airways for secretions. We know that kids with CF have more secretions and have a harder time getting rid of them. So this poses this risk of bacteria growing, causing pneumonia and inflammation of the airways.  So in kids with CF, it is sometimes necessary for them to go in and look closely at all the small spaces in the lower airways to make sure there isn't any infection.

If they do find secretions in her lower airways tomorrow, they will take samples and culture it to see exactly what type of bacteria it is growing. They will then go ahead and put in a PICC line(peripherally inserted central catheter), which is long catheter that is inserted in a vein in her arm and ends in a large vein near her heart. This will be there to allow her to get long term IV antibiotics if needed without having to worry about getting multiple IVs and doing damage to her veins. It ensures good IV access so that she can get the stronger IV antibiotics if the cultures show they are needed.

So at this point things are still up in the air. She will definitely get the PFTs and bronch in the morning. If both look good, they will send her home. If they find secretions they will take cultures, put in the PICC, then admit her, and start IV antibiotics until the cultures come back. And the course that follows will just depend on what they find. So please keep her in your prayers and lets all hope that her lungs will look clear and that this cough is just coming from some post-nasal drainage from a sinus infection or virus. Which is also a very real possibility since people with CF are also at a greater risk of sinus infections. They will also look at her sinuses while doing the bronch as well so we will know if thats the source of the inefction as well.

21 months

Kelsie is 21 months old. (once she turns 2, I'll stop counting in months!)

New words she has added to her vocabularly the past few weeks are "MINE" and "toys". Oh yes, we are definitely approaching the terrible 2s. Not only does mine mean she is claiming ownership, but it also appears to mean leave me alone, as this is MY SPACE and I want you out of it..don't try to lean in and kiss me when I am feeling ornery..."MINE". Yes, we hear this many times a day now!
Toys is a really cute sound though. After having a fit in the middle of Kohl's one day, I had a talk with her about not ever doing that again. I then told her that we were about to go into a toystore but as soon as I said it was time to go, she better not cry or have a fit or we would not go back. I asked it she wanted to be a good girl and go look at the toys and thats when she said "toys" for the first time. And then just couldn't stop saying it. And just in time for Christmas.

She is still running around, getting better at climbing steps, still holds our hand but climbs with alternating steps. She is learning to jump - or at least tries to. She is throwing a ball well overhanded. And likes to sling her toys out of the toy box ... like hard. She reaches in and just slings them behind her. Heavy toys too. She even likes to pick up her play kitchen and slide it across the floor. She often picks up heavy toys and carries them into the kitchen. This girl has some muscle!

She is adding to her vocabulary every day. She tries to say any and everything. Most of what she says doesn't sound much like the actual word but I can understand it. She tries to put words together too like "Help me".

She is crazy about Elmo and her baby doll. And quite affectionate and nurturing to all of her stuffed animals and baby dolls.

Still hooked on the paci at night...not sure how we will ever break her from those. But it will happen one day. I haven't even tried yet. But I will conquer up the nerve eventually.

Big highlight of this month is the new big girl bed! We got it a few weeks ago and she has done so well from the very beginning. I was worried about the transition at first but it wasn't a big deal at all. She cried a little more the first night about falling asleep but then slept pretty well. She did fall off the bed a couple of times and I had to go in and put her back in the bed. We have her old crib mattress lying beside the bed and the bed sits really close to the floor anyway, so its only a short distance to roll of as it is. But its enough to startle her. She doesn't do that as often anymore but when she does she just gets back up and climbs in bed on her own. The first week of getting the bed, she would walk up to her room and just laugh, so excited over her new bed! She still loves to go in there and sit and read books. And she now wakes up so much happier than she did when sleeping in the crib. She used to cry when she woke up; now she wakes up saying "ma ma" or "mommy" in the sweetest little voice ever! This morning was the first time she actually woke up and walked to my room without calling for me. It was quite cute to see her walking in here. I'm surpised it took her 3 weeks to do this but am sure this will not be an common occurrence anymore.

She has such a great laugh and I can't get enough of it!

Antibiotics...again

After 3 weeks on Augmentin for the cough that was thought to be from a sinus infection but never went away, we are now on another round of antibiotics. And this time it is much stronger. I kept thinking since the cough was still lingering around, it was probably just all part of a viral infection as her doctor had suggested. But it has now been 7 weeks since it first started and 3 weeks since she has been off the antibiotics. I emailed her doctor to let her know, and she suggested starting more antibiotics first thing. She also gave me a more invasive option which included taking her in for PFTs under sedation, starting a PICC line at that time, doing a bronchoscopy to view her lower airways and planning for possible admission to do IV antibiotics. I have to say, I was pretty surprised at that 2nd option and opted to just try another round of oral antibiotics first. She agreed with that plan but said if the cough isn't improved in a week, she would like to proceed with option 2 next week. So I am just praying this goes away before then, because imagining her being hospitalized for the first time at this age is just unbearable for me right now.

Besides that little lingering cough, she really hasn't acted sick. She hasn't been eating well at all the past 2 weeks but part of me just thought that was normal toddler behavior (although I was still concerned it could be something else). Her doctor was concerned about that as well because kids with CF often have a decrease in appetite and weight loss when they have pneumonia. But I'm hoping thats not what it is. And if it is, I hope this antibiotic kicks in quickly. So far, her cough is much better today. She did cough for about an hour last night during sleep which she hasn't done in a long time but then coughed only once today. She ate better today too. The antibiotic is Bactrim and she is getting the highest dose. She is taking 15ml and boy is it a struggle to get it in her. In the past, she had learned to love taking her medicine because I would sing and dance around the kitchen, but even that isn't working this time. I hate forcing meds but thats what I ended up having to do today and she hated. And so did I. We both cried. Hopefully some of my other tricks will work in the next day or so. I'm really hoping and praying this doesn't turn into anything more and that we don't end up at the hospital next week.

Love of my life

She is the light in my eye
The song on my lips,
The music to my ears,
The joy in my heart,
Love of my life.

Please God, never take her away from me.

Happy Monday!

Had a great day with my sweetie today!

This is what followed craft time today!

Her laughter is contagious and is the greatest sound I have ever heard.

She is doing the big belly laughs now and just gets so tickled. I LOVE IT!

My sweet, beautiful girl!

I love this pucker too! We see it the most when she says "Juice"

 

Her new word today is "toys". And just in time for Christmas.

 

We also have a little battle over the Tarheels and Wolfpack

around here on a pretty regular basis. You can tell she is

already a little confused.

Days of Thankfulness

I will updating this post daily as we prepare for this season of Thanksgiving. Every day we should give thanks to God for all his blessings, but this is a particularly good time to remind ourselves of all we have to be thankful for.

Day 1: I'm thankful for my Lord and Savior
Day 2: thankful for the most precious gift of my life, my sweet and beautiful baby girl
Day 3: thankful for a husband who loves me unconditionally and works so hard to provide for our family
Day 4: thankful for parents who raised me in a Christian home and taught me to live for the Lord.
Day 5: thankful God saved my life and my legs from my near-fatal car accident 6 1/2 years ago. And thankful for what I learned about myself and about life as I pushed through the painful experiences that followed.
Day 6: Thankful for all the kisses, hugs, laughs, cuddles, storytimes, piggyback rides, dances, tickles, playtimes, and countless other precious moments with my little girl and for the beautiful bond we share. I ♥ you my sweet child.
Day 7: Thankful for my education, my career, my job, and the ability to be a part time professional and a part time stay-at-home-mom. I love being both.
Day 8: Thankful for technology so I can still talk, text, and do face time with Nathan even though he's out of the country.
Day 9: Thankful that my mother-in-law is able and willing to keep Kelsie 2 days a week while I work so that we do not have to risk her health by putting her in daycare. And for my mom and aunt for making sacrifices and adjusting their schedules to help fill in the gaps anytime I need them. I am truly so blessed to have such loving and supportive women in my life. Because of them, I can relax while I work knowing that Kelsie (and her health needs) are being well taken care of.
Day 10: Thankful that Nathan made it home safely from Brazil!
Day 11: Thankful for this wonderful day of quality time with the 2 great loves of my life!
Day 12: Thankful God blessed me with a sister, someone I have shared my life with, the ups, the downs, the laughs, the tears, the screams, the cheers, the quiet times, and the hours of conversation. There is no one else I would choose as my sister. We are so alike yet so different but we are perfectly sisters. I love you Valerie Campbell Runnfeldt and I'm so glad you are the sister and friend God chose for me. ♥
Day 13: Thankful for my child's laughter and my ability to hear it. Every day is a whole lot sweeter because of that beautiful sound!

Day 14: Thankful for my scenic drive to work. Fall is such a beautiful time of the year!

Day 15: Thankful for my all my college friends and the times we shared together at Carolina. I miss you all SO much!!

Day 16. Thankful for this job that allows me to work from home on Friday nights.

Day 17. Thankful for a warm bed to crawl into tonight.

Day 18: Thankful for bedtime stories and goodnight kisses! ♥

 

Day 19. Thankful that Nathan is such a great daddy to Kelsie, adores her, and takes such good care of her.

Day 20. Thankful for my family's health.

Day 21. Thankful for the kiddos that make my job more than just a job.

Day 22. I am thankful for the Holiday season. I love everything about it! The time with family, the laughter, the joy and anticipation, the reminder of thanksgiving, the food, the decorations, the tree, the ornaments, the gift giving, the lights, the music, the cheerfulness, the memories made, and the story of the miracle birth of my Savior.

Day 23. Thankful we live just a few miles away from the one of the best CF centers in the country.

Day 24. Thankful that Kelsie's diagnosis was made at just 2 weeks of age so that her lungs didn't suffer any damage before we found out

Day 25. Thankful for the meds she takes everyday that allow her to grow and develop like any other kid her age.

Day 26. Thankful for her amazing doctor that is always there for me to talk to me anytime I need her.