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!