Gaithy is sick

[christyw]

I am at a loss as to what is really going on with Gaithy. The last few days, she and I both have had lots of allergy/sinus type stuff going on. Yesterday and today Gaithy has seemed totally miserable with it, although my symptoms have alleviated. She won't get up for more than 30 minutes, basically for me to feed her, and then she goes right back down to sleep. She has NO FEVER, but her breath rate is pretty high constantly, (40-60 bpm, and right now it's on the 60-end of things at 3am here), her sats are lower - around 94 to 96%, so not too low...but her heartrate has been as high as 180-190 tonight (beating right out of her chest!! very scary to me! she is usually around 70-asleep and 90 bpm awake), and is now around 150, with her being in and out of sleep, totally resting - doing nothing, other than the occasionally hacking cough. At first her belly was full (earlier tonight when she awoke for her last meal) and I was trying to attribute the high HR to that, along with her constant hacking of secretions. She has lots of icky secretions and thin, clear ones as well. She's drooling like crazy!!!! And then the thick stuff is in the nose, but especially from the trach. Again, no fever - so I'm confused on the high HR, and high breath rate. It's scaring me.... Â*Could a simple cold, with no fever, cause these symptoms? The weather has been CRAZY around here, and I know that is playing a part, but this is a little extreme. We've been in the 70's, then down to the 40's, and tomorrow night is supposed to be freezing, while today is warm and humid.

I just wanted some ideas....maybe someone has seen similar stuff...thanks in advance!

christy Â*

[cariaad]

I think I'd take her in and have her checked. Alli can get very sick and not show a fever (her body temp will drop instead!) All the sleeping indicates she's fighting off an infection, so maybe she needs some antibiotics or something to help. Have you increased neb treatments to loosen up the junky secretions? The high heartrate would concern me the most. That was actually our first indication last time Alli was sick, and boy was she sick (flu). Anyway, keep us posted and I hope she starts feeling better soon. Deb

[Jessica's Mom]

I am no doctor, but this is my opinion...
My son Anthony, he is 3, and without a trach, but he has had a hacking cough and thich nasal secretions for about 3 weeks now. Jessica, with a trach, also has the same thing. I have to suction her trach and her nose, secretions have been clear, yellow, clear, yellow for the past 3 weeks. Her heartrate and breathing was really fast for a few nights off and on, so have been Anthony's. Anthony can take something to dry him out, Jessica can't. I just had them both start on Amoxicillin two days ago. It seems to be working... When Jessica's heartrate was high a breathing fast, a dose of motrin helped common her down, even though she didn't have a fever, I still gave it to her and it helped. As far as the coughing! It stinks, sometimes she coughs so hard she throws up, but it is good because it is alot of mucas. I wish my son would throw up, he coughs so long sometimes, I wish he would just throw it up. Jessica usually feels better after a good coughing throw up fit. Also she is fine all day, then goes to bed at 9pm and the coughing fits start about 12am, same for Anthony. As far as the sleeping, I believe when a child is sick, they need to sleep more. A few days in the past weeks, Anthony has went to bed at 8pm not to wake up until noon the next day! Jessica has also had her days were she has been sleeping ALOT. I just let them be and take it as a little break for myself to get things done. My 5 and 6 year old had this cold too, but only for a few days. It seems with the younger ones it is lasting forever, which was I put them on antibotics. Again this is just my opinion, but it kind of sounds like what your daughter might have. Jessica has never required oxygen at night and last week we put her on .5 a liter for the night to get her over the hump. The cold is not gone, but I think it is better then it was. Are weather here too has been crazy. I also give Jessica an abuterol neb in the morning and before bed, this seems to help, and she is getting a pulimcort neb in the morning. One more thing, her appetite isn't what is used to be before the cold, but neither is my son's, so I am not too concerned about it. Good luck.
________
LAMBO TECH

[christyw]

I thought about nebulizer treatments last night, but I didn't want to use albuterol because her heart rate was SO high. Also, she is just so wet sounding anyway, so I really didn't think saline treatments were in order. I even took her off her mist thru the night last night and seemed to get better. She seems overly saturated with humidity just with the nose these last two days...which is a little unusual. her lungs were clear all night, sounds SO good actually - but when she would start couging things would get junky. It seem like it is all originating nasally and then draining, as well as her oral secretions working overtime and she chokes on those....her oral aversion is REALLY showing itself. But chest-wise she really seems fine (hopefully that continues!) Â*It is 11am the next day now and her heart rate is still 150 awake, and she's breathing pretty fast. I called the on call nurse at the ped's office...waiting for a call back. I'm sure we'll be going to the office - they have sick call from 2-5pm. Anymore info is still appreciated, and I'll let you know how it turns out. Oh how sad it is to see your child feel this badly! She's so upset, constantly, very irritable, very fussy, and just looks so distraught! It's terrible.

Thanks guys,

christy

[christyw]

Thanks all. We saw the pediatrician this afternoon. He had blood drawn, had her BP taken (which I guess was fine, I forgot to ask and he didn't say anything), and had a chest xray done. The xray showed some junky stuff in the right lung. Nothing really bad - but he says it is definitely pneumonia-like. So, we were given a script for Omnicef. I am starting it tonight.

The bad thing is, she had this "pneumonia-like" stuff just a couple of weeks ago. I asked him if we should really be alarmed that she is having this reoccur like this. He said he really feels like we're to the point where the trach is causing her more harm than good, and that it will just be nice to have it out. I agree whole-heartedly, of course, but if an LTP is needed, we will have to wait a bit longer. We are getting a second opinion on the entire LTP issue tho. We are actually switching ENT's in fact. We'll be getting an entirely new perspective from a more experienced doctor, but it may all be the same.

Anyway, Gaithy's heartrate is staying around 150...which is quite a bit higher than normal (usually 75-100), but hopefully it will come down as the infection is fought off. Still no fever and is breathing more slowly....I'm so glad next week is our Thanksgiving holiday at school and I don't have to worry about even taking her to preschool. She needs some more downtime for sure.

Thanks again,

Christy

You may want to ask your pulmonologist to switch from albuterol to Xopenex for neb treatments. They work the same, except that Xopenex does not elevate the heart rate. If your insurance doesn't cover it, ask your doctor for as many free samples as you can get.

Glad you went to the pediatrician, and I hope Gaithy feels better very soon!

Take care

[Jacob's Mom]

Christy,
Sorry for the late reply. I had all the same ideas as most everyone else, especially about the Xopenex.

I hope Gaithy is feeling better today!

Take care,
Amanda

[christyw]

Thanks for the heads up about the Xopenex. My husband (EMT) has been telling me we should use this (that's what they used in the ER and in the ambulance), but I kept saying that until the pulmonologist changes it, we'll just do the albuterol. Which, we rarely use anything or do any nebs at all...so it seemed futile. But right now it would be nice. Her heart rate gets up to 180 while doing a treatment, and then goes back down to 140-150 afterwards...and that's pretty much where it stays all day. I was very happy to see her get down to 105-109 last night while resting - on a little oxygen. I'm HOPING that once her breathing is slowed (after the antibiotic starts kicking the pneumonia) that her heart rate will slow as well - does that sound correct?? I've not seen her heart rate this high in two years, and it is alarming.

Thanks,

christy

[indiemum]

Chris,
Quick note. Indie has been going through very simialr things for 4 weeks now and I am worn out. We are now on our 4th course of antibiotics and it seems to be working, finally!!!! I'm thinking of you sister, take care of that little angel. I gotta go suction again.

Kelly

[christyw]

With all of our kids going thru so many similar sicknesses, at the very least it helps me to know that we're not alone! I ALWAYS let my mind run too wild when Gaithy gets sick. I start thinking crazy things, exaggerating the entire thing in my mind....

christy