I wanted to post a couple of videos of Jax coughing spells so you can see them, but the dang computer won't let me! And I don't have the patience to fight with it today. So I'd thought I'd post these cute pics from last week. Nurse Brandon doing his own version of therapy! Hey whatever works the muscles right?Yesterday we went to our ped. She just wanted to make sure that Jax isn't getting something viral with all this coughing. He did spike a temp yesterday of 101.7, I gave tylenol, and 45 mins later it was actually higher at 102. But he was hacking that whole time, and he really can work himself into a pretty high temp. But better be safe than sorry, expecially because our ped will be out of town all next week. We did a chest x-ray, VRP, and checked him out head to toe. The chest x-ray wasn't too bad. There was a little more yuckiness around the area's of lung disease that are already there, but nothing like when he gets sick. Plus he vomited a couple of times during the coughing fits (so much for a nissen!) so he probably aspirated a little. His right ear had fluid, but his tube is out, so that would explain that. She said she could hear a bit of a wheeze, so why in the heck aren't nebs working? Expecially with our family history of asthma, its crazy! We'll see what the VRP shows, I'm thinking nothing. If it does show nothing then we call ENT and get another look at his airway.
Last night was a little better. He coughed nonstop from 10 till 12, and finally conked out. Then he slept till 4, which means I got about 4 hours of sleep in a row! Wahoo!
He was up for about an hour, but the coughing wasn't as bad as its been, then he went back to sleep and he's still asleep now at 9am. Hopefully the steriods are kicking in finally and we are at the end of this coughing episode. Oh and we also changed out his trach last night, wondering if for some reason that was causing it. I don't know why I didn't do that before! I just want to know what causes these severe coughing episodes, because it happens every few weeks.
Oh and just so you know, the nurse from Monday night is not coming back! I don't need the hastle!
Great job sitting up and doing therapy with your nurse, Jaxson!!!
ReplyDeleteHopefully the steroids will kick in fast and both of you will be able to sllep better soon!
As for the nebs not working, if the lungs are a mess from lung disease, aspiration or continuous illnesses, it may take weeks for you to notice that they are doing any good.
Were you able to get nursing approved for longer now? I hope so!
Have a great day! Hugs!!!
I know you don't know me but I just watch to see how Jax is doing because I think he is a cute little Guy! I understand how you feel about the no sleep.. I don't have a little guy with a trach but I have the hacking cough and no sleep going on. I have woke up my little boy who has come and slept on the couch with me the last 2 nights (I was trying to let my sweet hubby get some sleep).. I hope all gets better with Jax and your sleeping. I just wanted to let you know that I am thinking of you and your family.
ReplyDeleteFour hours in a row? That's refreshing! :) I hope his cough is on it's way out. I hate when we can't figure these little guys out.
ReplyDeleteWait a sec, you ped has an Xray machine in the office?? That is so convienient! Im slightly jealous.
ReplyDeleteJonah has a nissen as well, and can vomit too. I ask what is up to the drs, and the reply is always, "nissens are just looser now days"..I don't fully understand it, why did we do this then? Aspiration is aspiration regardless if its on throw up or stomach acid.
The second thing I was gonna write was that this is probly why he is wheezing even tho he is using nebs. Jonah is always wheezing, (he doesnt even have asthma) He is just a little wheezer. I know when it's bad by how long the wheeze lasts from exhale to exhale.
Its awsome how well he is doing with his therapy. Isn't that a great feeling?
To see that it's actually working?
im not sure if you read the anawser to your q about which rm J was in in the PICU... he was in rm 18,21 & I think 11...Its the fish bowl room made of windows so all can stare as entering the PICU...yeah that room.
WOW with 4 hours in a row you must feel like a rock star today! Glad to hear the coughing is getting better and he had a good check up. Also thankful that the nurse isn't coming back. I am sure there are others that will be awesome and serve your purpose so much better. Will keep praying for sweet sleep for you & Jax. Love the pics with Brandon they obviously have a great connection.
ReplyDeleteJax is looking good - even with the coughing. Isn't amazing how little sleep they can get by on - then us too? :) We have been in that mode since Christopher was born...It is sometimes hard for people to understand why you are exhausted all of the time when you are home AND have nurses! Keep trying for a night nurse. Once you find one you love, you will wonder what you ever did without them! :)
ReplyDeleteStay well! Hugs!
Steph and Christopher
Sure hope Jax feels better quick, all that coughing has to be miserable for both of you
ReplyDeleteHow funny I have chiils! the girl on Echmo is Shaney... known at the hopsital as Jonahs girl friend. Jonah went in with RSV they were not sure what was wrong with Shaney, but Jonah and her were following the same course. Everyone thought it was super strange, one child went on the respirator then the next. It was like that through the entire month!But She is doing really good but has been diagnosed with having CF. Kind of ironic...Jonah and her were room mates the ENTIRE time in the PICU. So yeah, we must have seen each other. What a small world...or small Hospital. haha. I am going to a CF parents night out tonight and I hope to see Shaneys mom there. So...Maybe we were in Room 17 wow, if we could go back in time I would have loved to of mneet you then. i was falling apart...They wanted to pull the plug on Jonah.. can you believe that...He was put on the Osccilater which is the reason I think he is now the way that he is. Who was your attending? Did you ever have Bo as your nurse?
ReplyDeleteIt's good that you got more sleep, that's always refreshing :) And it's good that you don't have to deal with the dumb nurse again. Having someone around that stesses you out makes everything feel so much worse.
ReplyDeletePoor little guy! Hope he's back to feeling like himself soon.
ReplyDeleteLoved seeing Jax sitting with Brandon - great - just like a little penguin. :)
ReplyDeleteOh man, I hope you get some answers soon. I am glad you got some sleep though, that is better than nothing.
ReplyDeleteHugs and prayers.