Wednesday, February 21, 2018

Kaylee + RAD



It has been an emotional roller coaster ride with Kaylee since October with medical issues.
This time was most definitely the scariest yet, and we hope for it to be the last.
friday evening Kaylee started having a mucus like cough... she was not wheezing, yet. Around 4 pm she began complaining of being extremely tired and had a severe headache that was on and off through out the night. JD works night shift as most know, so when he got home around 6:30ish am.. he listened to her and instantly said "you need to get her to the hospital.. something is clearly wrong" and at this point she had started taking deep breaths, and you could even see her chest sinking in as if it were difficult for her to breathe. We get dressed, head out the door, and it was almost 8 am as I was pulling in. They checked her in and instantly thought their machine was malfunctioning but in reality her oxygen was really at 80. Very scary and dangerous. Once the nurse in the back realized her o2 was really that low, she went to get the doctor.. and she was put on oxygen. I was a little worried at this point, and being alone I had to let it sink in while wondering what was causing her o2 to be so low.. JD had worked the night before, so he was at home asleep. His dad was able to wake him up, and have him call me so I could let him know they were doing an X-Ray on her heart/chest to see what was going on. She tested negative for the flu, and also negative for pneumonia. She ended up being admitted to the pediatrics unit for Reactive Airway Disease. If there are any mommas who read this and their child has been diagnosed with this.. comment below.. I am all ears on any advice you have or hearing how your child was diagnosed with this same disease. I am aware this isn't considered to be "asthma", but we were also told not to be shocked if this happens again in the future with an illness involving the upper respiratory tract. The doctor explained it to us like this... basically there are children who react this way to pet dander, season change, and viral infection which are those who are diagnosed with asthma, and then there are the children like Kaylee who had the breathing issues and her o2 dropped due to a viral infection. the mucus in her lungs blocked her airway which caused the oxygen levels to be so low. the lowest it was at was in the 70's when it's suppose to be at 98/100. Finally after the 4th day, her pediatrician gave us the ok to go home, but to follow up with him on Friday.
I do trust her Doctors opinion, and specifically that one doctor because when the others were willing to send her home the second day, he was not comfortable with it and I wasn't either. he took the time to let us know he looked over her xray, and he also listened to her heart for a few minutes to see how it sounded.. he also told the nurses on the last night to keep an eye (around the clock) on her blood pressure.. we were to also watch her o2 levels on the monitor and count exactly how long she would be at a low number. I respect him for being so involved in making sure she was ok before going home, and looking further into it, and I know if there are any concerns of it being her heart, he would send her over for more tests to be ran. I am going to ask some questions about her heart on Friday when she has her follow up to be sure he's confident it isn't a heart issue. Trust me when I say, I am that mom who has anxiety and worries non stop. I would not allow us to go without any answers. she has an amazing pediatrician, he knows his stuff.


backing up the story a little bit..
Kaylee is all too familiar with the er.. with doctors and nurses poking at her, checking her all over.
she was ok at first, but she hears what they're saying, and she's at an age of understanding when something simply isn't right or ok. I'm 25 and I've never had an xray in my life.. Kaylee has had two, plus an ultrasound, and catscan. all within a few months apart, for two different reasons. she does great.. she is so strong.. much stronger than I would have been at that age.
she had her xray, she had been on oxygen for a while and she was starting to feel better.. they have been giving her a steroid since Saturday so she's been eating nonstop ever since. Once she was feeling a little better, she asked me for a taco to eat because she hadn't had any food all morning so my mom sat with her in the er so I could run home first, pick up Kylee, get both girls some food.. and then Kylee went home with my mom for the next 3 nights. finally we ended up in a room in the pediatrics unit around 3:30.. JD had to work that night, so I knew it would just be me and Kaylee in this together until they released her which is a little worrisome at first when you aren't sure what exactly "reactive airway disease" is until you ask and then google it. 
JD ended up leaving work to come there later on after figuring some things out.. which I can't thank him enough for doing so because I would have been exhausted being up and down with her, and the nurses for 3 nights with zero sleep because in a hospital you just don't get any sleep. we switched on and off through out those nights with Kaylee because her sleep schedule was a little off. JD and I make a great team.. just saying. I don't know how I would emotionally get through these types of things without him right there by my side along the way.


skip to day 3 and Kaylee was finally showing good signs and her oxygen was in the 90's.. therefore, the dr gave her the ok to go to the play room which was loads of fun. it was just us three in there, and I'm pretty sure we all 3 had the same amount of fun after being cooped up in one room for those three days. we had a lot of pretend play.. going to "target" and "starbucks" while her daddy pushed her around in the play car. we played air hockey. the entire time her o2 remained in the 90's but she ended up having to stay because they didn't want to chance her o2 dropping in a deep sleep. Kaylee remembered earlier that morning, a doctor told her she looked as if she could go home later that night so being told she was staying an extra night was tough on her but she didn't show the emotions from it or start crying because as she was told she was staying an extra night, a volunteer lady from somewhere brought in a support bunny for her to pet for a bit, and at the same time one of my best friends who she absolutely loves showed up with donuts, balloons, oreos, and a ninja turtle. all of Kaylee's favorites. others probably didn't realize the impact they had on her, but JD and I noticed. My aunt (who drove about an hour or pretty close to it which we SO appreciated) brought her a balloon and stuffed animal... she was so blah before she arrived.. and then ended up cheering up quickly. She loved and appreciated those who took the time to come see her because on and off she would roll over on her side, and cry to herself without even talking to us and when we noticed she wasn't wanting to talk.. we asked what was wrong and it was "I just want to go home.. I hate this place" 
both girls were emotional from being away from each other. we did have my mom come sit with kaylee for a few hours while we took kylee home to see the cat and dog, and took her out to eat, and then for a cakepop at starbucks. it cheered her up some, but she hardly took two bites because those two just haven't been away from each other that long since birth.
we let them face time every night because it was all they were asking for. when Kaylee would hear them say she wasn't improving, or when she had to stay an extra night.. the one person she asked for was Kylee.
it was so nice to finally be home. both girls are back to playing then fighting every couple minutes.
life will hopefully stay pretty normal.
kaylee was sent home on a steroid plus with an inhaler to be on the safe side until Friday when the doctor clears her for everything.
we pray, at least. 









she told her daddy she wanted to leave this specific balloon for the next sick kid, and she did. even though they can't technically give anything left over to the next patient, I do appreciate the nurse telling her how thoughtful she was, and didn't tell her they couldn't actually do that. we left the balloon behind. I am so proud of Kaylee for having such a huge heart and caring for others even when she's sick.


it was a beautiful day today.. 80 degrees.
I had to get a few things for a meal at the store so we made a quick trip to Target, and she asked to run in and see the new cats at petsmart. it was nice to spend the day with just her, not being in a hospital, and just enjoying her bubbly little personality. we bought her a new car seat today because she is growing like a weed.

**side note**
I don't care to hear any opinion from anyone on it, she's our kid and we make those decisions based on our feelings and a professional opinion.. she meets the requirements for the car seat.. we were told by an EMT back in October but we still waited a few months to be sure... however, Kylee does not. she is much smaller than her sister.. we even tested her to see for ourselves, which we already knew she would be way too small and way too short)  
ANYWAY. 
 we had a great day, but we didn't do much. we took it slow, she enjoyed the fresh air. and now we're relaxing on the couch watching a movie.
Kylee is asleep already... even when there is no school tomorrow.
that girl is her momma.. she loves her sleep.

keep praying.. and if you aren't a religious person, then just please send some good vibes this way. if you are still reading this, God bless you, because this was a long post.. but it was also a very long couple of days. we're so thankful, grateful, and blessed.
-- brooke

1 comment:

  1. I'm so glad she is feeling better! It is so scary to not know what is wrong or how to fix it especially when it's breathing related. Reese was diagnosed with RAD at 3 months. His was a severe cough from a viral infection. He would have a barking cough for 7 to 10 days every month. So we were only having 2 good weeks on average a month. We ended up doing breathing treatments twice a day of pulmicort(2 others first but they didn't work) and then added albuterol every 4 hours when he had a flare up. That really helped get it under control and after we gpt to only have an episode once or twice in 6 months we started backing off the pulmicort until he didn't take it anymore. He was diagnosed with asthma at 3 but I don't know that he really has it or not. Because they told me he grew out of RAD anf now had asthma but about 6 months ago his O2 levels started dropping randomly and they said his RAD was back. He is 5 now so he is able to do an inhaler. He gets chest pains and says it hurts to breath so he does his inhaler and we check his O2 and it is usually down. We have had down to 80 that we have caught. When he gets any kind of cold he syill ends up with a severe cough that we have to treat with the albuterol and inhaler but it is much less frequent that when he was younger. A good doctor that you trust is the key and learning what works best for you and your child. Everyone has an opinion, but when you are a good mom your gut instinct is the best ❤❤

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