Jadyn is sick :(

Momi2AntnJadyn · #1 06-01-2004, 09:50 PM

Jadyn has had somewhat of a cold for the past week or so, but usually she gets through them just fine. Last night she started coughing so bad, she barely got a break. She was just miserable all last night, and I said that if it went into today, I'd take her in. Well, she was soo much worse this morning. I started getting everything together to go to the hospital, and she just got so much worse so fast. She was not sounding good at all, she could barely breathe, and I did not think it would be safe, or quick enough, to drive to the hospital, so I called 911. First time I've ever had to do that. She has had a great winter, so this was so suprising. They gave her a continuous neb all the way to the hospital, but it really didn't seem to help any. She was just retracting worse than I'd ever seen. When they took her temp in the ER it was 103. They got a chest x-ray and what I overheard was something about "streaking" in such-and-such area, and "a little" pneumonia, possible RSV. She has been getting Prednisone, and neb treatments every few hours since she's been here, and she has calmed down some, and is smiling a little and playing, but she is still breathing very fast, her heart rate goes well over 200bpm at some times, and she is on a vent rate of 35, with 55% o2 (she is usually on a rate of 22 and 25% o2 and only during sleep) all the time. They tried to turn her o2 down, but she started desatting. She is still working so hard, and retracting so bad, but like I said, she is acting happier, but that is about all I can say. We were supposed to be leaving for STL Thursday night, but they said she'd at least be here for a few days, so it looks like we won't be able to make it

They have her in isolation and everything, just "precautionary" they said, incase it is RSV. SOO that is what is going on...

christyw · #2 06-01-2004, 11:17 PM

Amanda, I'm so sorry! I hate that you had such a scare with Jadyn. Hopefully the steroid will slow her breathing down soon, and if there is any pneumonia----are they starting an antibiotic as well? Hopefully it will just be a few days, but I hate that you will be missing the conference. Gaithy had a 103.6 fever on Saturday night, after we got in from grocery shopping. I was freaking out! I just knew she was going to get terribly ill and we'd have to stay home. However, by Monday she was fine...must've just been something she took care of on her own. Anyway, I hate to hear this, and I hope Jadyn is back to her normal self very soon!

Christy

annerae63 · #3 06-02-2004, 09:47 AM

I am so sorry to hear that Jadyn is sick. I do hope that her breathing and heartrate slows down-that is just so scary when that happens. Please know that we will miss you this weekend and pray that Jadyn has a full recovery.

Doug-Iowa · #4 06-02-2004, 10:51 AM

Jarita, Mason & I send our love and prayers for Jadyn. We wish you all the best.

akabot · #5 06-02-2004, 12:35 PM

I'm so sorry. I will keep Jadyn in my prayers.

Amy

Momi2AntnJadyn · #6 06-02-2004, 03:11 PM

Quote:

Originally Posted by [b

Quote[/b] (christyw @ June 01 2004,23:17)]Amanda, I'm so sorry! I hate that you had such a scare with Jadyn. Hopefully the steroid will slow her breathing down soon, and if there is any pneumonia----are they starting an antibiotic as well?

They have her on IV antibiotics as of today. Her chest x-ray looks better today, but they said she is "hyperinflated" and there is still some "streaking", whatever that means? They put in an NG to get some of the air out of her belly. She is down to a rate of 30 on the vent with 45% o2 right now, and they're going to try to keep weaning her. They turned her PEEP up from 4 to 6. She is acting much better, she is just mad because they won't let her eat

I'm bad, so I gave her some of a banana when they weren't looking. The doc. said with her being on the vent, he thinks she could be at risk for aspiration if she eats, but I feed her on the vent all the time, so whatever LOL. We happened to get a double room this time, only there is nobody on the other side... so we have a HUGE room and that is new to us LOL. Two TVs, lots of room to move around, etc.

I'm also very disappointed that we are missing the conference

It had to be now of all times! Like I said, she had a great winter with no respiratory related hospitalizations, and now this. But it looks as though she is getting better and I'm pretty sure she'll be back to herself in not too long. The nurse that was going to accompany us to the conference joked about us getting a hotel here in a few weeks and watching a tape of the conference, LOL.

ben's mom · #7 06-03-2004, 06:07 PM

We're in the same boat. Ben decided he missed his friends at the hosital and thought a bout of pneumonia should do the trick. We're at St. John's (right down the interstate from the conference) battling it out. Good luck to you and know you have our sympathies. Maybe this (the conference) will be an annual event?? Then we can try again next year....
Jenny

Momi2AntnJadyn · #8 06-03-2004, 11:07 PM

Just thought I'd update a little since I have some time. Love these computers they have in the PICU family room LOL. Jadyn is getting yet another x-ray that we left the room for them to do. Her tests came back negative for RSV today, so she does not have that. They're just concluding that she has a virus that she has taken for some reason especially hard. She has been on Flovent since I can remember, and at her last pulmonology appointment, her doctor said her lungs sounded good, and that we could quit giving it to her. Now another doc. on the team thinks that her not getting the Flovent could have made her take this illness so hard? Do you guys think that could be it? She has had so many colds, but has never taken them too much worse than Anthony or I have. They have her on continuous feed through NG tube, because they think she might be at risk of aspirating being on the vent 24-7 and coughing as much as she is from being sick. She is much happier now that she has something in her belly. I'm kind of worried that if it goes on too long, she will have a hard time going back to eating by mouth, but I really hope not. I asked her doctor today what point she wants her to get back to so that she can come home, and she kind of looked at me like they weren't planning on sending her home anytime soon. We have not had much luck weaning her vent settings as of yet. She desats whenever her o2 is turned down. The lowest we've gotten it is 45% which is quite a bit for her. She has been on a rate of 27 since this morning. Her pressure settings are much higher than her normal, but I don't know exactly what they are since I don't even know what that all means. Her doc. wants her down to at most 30% o2 and back to her home vent (she is on some diff. one and is also using some machine to work her secretions loose in her lungs?) before she'd think about sending her home, so we have no idea at this point. I absolutely hate the hospital! In the beginning, Jadyn was not on the vent, so when we were living in the hospital, she was on the regular pediatric unit. So since she has been on the vent, that means we stay in the PICU whenever she is admitted, which meant that the nurses weren't that familiar at first with Jadyn or with me and how much I like to be a part of Jadyn's care. They're getting to know me better since we've now been here a few times, so they're kind of just leaving us alone as long as I'm in the room, which I like. If I'm in the room, I would prefer to be the one to suction, do trach cares, change diapers, etc. But I also want to know that she is well taken care of if I do leave to eat or run home or whatever, and so far she's had good nurses during this stay. I just hate the hospital either way, I'm sure you all know what I mean. So that's about all I have to say I guess

arielsmom · #9 06-03-2004, 11:34 PM

Amanda,
This is just a long shot, but is it possible that Jadyn aspirated her feed and had an acute event? If she was a little sick to begin with it can make feeding more difficult for a trach kid and to have such a quick decline.?...Just a thought.

I really hope she gets better soon and I'm sorry you had to change your plans. Our lives are completely at the mercy of our little ones!
Karen

cariaad · #10 06-04-2004, 05:36 AM

Amanda, I hope you all are doing better by now...? I hate the hospital as well-who doesn't?-but sometimes it just happens. Our last stay was a mystery viral infection which led to pneumonia. It hit Alli really fast and hard. But she recovered well, so Im hoping Jayden does too! Keep us posted. Deb