Monday, October 20

Trace- ER Trip Friday Night and More

Thursday night we nearly took Trace into the ER. He kept choking on mucus- leaving Trevor and I both very rattled. He wasn't running a fever anymore for a  couple days, so the cold itself was well past. However, for us often the scariest part of colds comes after the illness itself has ran its course and the body starts to try and flush out the excess mucus. It can start a chain reaction causing more mucus to be produced and our air passages to swell up even tighter then the actually virus caused. The resulting asthma flare is too often much worse then the illness was.

This seems to be the case of what's happened with Trace, and I suspect is happening with Tristian. So even with nebulizers and all our normal steroids- Trace's breathing was getting worse and choking was getting more frequent. Daytime is usually easier to breathe during so if you can get through the night daytime is normally better. There are a lot of theories about why this is but nothing really definitive.
Anyways, Friday evening we hit a point where even after a nebulizer Trace's choking was halting his breathing for several seconds every couple minutes or more often. I stacked a second nebulizer back to back and then Trevor took him into the ER. I called my Mom who took Tristian for the night and dropped me off at the ER also. Last time Trevor took Trace in because of choking during a cold was before we knew Trace had asthma. They told Trevor that Trace's lungs sounded perfect, he just had a little cold, refused to do a lung xray and sent him home. I called Tristian's pediatric pulmonologist and set up an appointment- which found damage already in Trace's lungs when they did an xray for diagnostic purposes. Something the ER would have seen if they had done the xray Trevor asked about. The ER also sent us home years ago when Tristian was a little younger then Trace and his lung was collapsing. Saying the same, "He has great breathe sounds!" that we hear every time we see a new doctor. They even did a xray that time because I pushed for one (and reminded them they had to do one legally if I requested it). So home we went and I sat up all night doing treatments while praying. The next morning we got called in by Tristian's pediatric pulmonologist who had been sent the xray the ER had done. Somehow the ER doctor had missed that my 3 year old's lung was visibly collapsing on the xray. Hey, but he had great breath sounds! So, understandably at this point Trevor really dislikes taking the boys to the ER if we can make it til we can see one of our normal doctors. However, it was Friday night at that wasn't a possibility.
So after I get there the resident tells me Trace sounds great. I tell her that the better we feel the worse we sound, the worse we are doing the better our lungs sound. I've had to prove this to doctors myself. I walk in and my peak flows are 400+ doctors listen to my lungs and say I sound awful- want to prescribe me steroids, antibiotics and anything else they can think of. I walk in with a peak flow of 200 and doctors tell me I have, 'Great breath sounds'.  I don't pretend to understand it, it's just the way it is. So we go through the whole choking on mucus family history and the resident jumps to cystic fibrosis. Nope, we absolutely don't have that. My oldest brother was incorrectly diagnosed with it at 10 months and as he's 34 now. I'm pretty sure we'd have dealt with some transplants by now if it was cf. The overseeing doctor is in a procedure so the resident sends for a respiratory technician. This is where it got really fun. She comes in and listens to him then leaves without discussing anything with us, not even truly responding to my questions. Comes back with a treatment. I say I'm not comfortable giving him another treatment this soon after he had two back to backs (remember, Trace is the size of an older 1 year old or younger 2 year old). I remind her he's not doing awful right now, the reason we came in was because we can't continue to give him back to back treatments to keep him breathing (you know, side effects and whatnot). She flat out ignores me and starts setting up the treatment.
Luckily the overseeing doctor comes in, Dr Heidt. He listens to Trace and does the normal, "Great breath sounds!" I try to explain again, at this point nearly resigned to having another ER visit end with me demanding a chest xray. At first the doctor continues to do the whole, "I don't hear any congestions" I repeat myself and was absolutely shocked when Dr. Heidt stopped and visibly considered what I was saying. He then asks if Trace already takes medicine for asthma. Yes, inhaled maintenance steroid daily, nasal steroid daily, albuterol hfa as needed, atrovent hfa as needed, albuterol nebulizer as needed, atrovent nebulizer as needed. "Who's Trace's doctor?" Dr. Konig or Dr. Fransisco. "Does he also see a pulminologist?" Those are his pulminologists, they are both in the Pediatric Specialist Clinic for this hospital (just down the hall). The boys see them more then our family doctor.

Here's the sad part, I still had no real hope the doctor was going to hear me yet. We've explained all of this including the doctors the boys see before and still had ER doctors stick to the, "He has great breath sounds" rhetoric. Dr. Heidt was different. I am so very grateful for that. I nearly started crying when he asked what we thought was going on (bear in mind that I had been sick all week with a cold and had been up nearly every night of the week giving myself &/or little boys nebulizers). I said his cough is really tight, he's spitting up mucus after choking periodically even with nebulizers but not coughing up anything. He's ok right now from the stacked nebs but around 2 or 3 am he's going to be in trouble again. Dr. Heidt nodded and asked if I thought he needed to be hospitalized. First, I'm the wrong person to ask that too, I have never ever said yes to that question- even when my own peak flows were in the 100s while pregnant. I kind of figure if the doctor is asking instead of rushing the patient in somewhere.. hospitalization is optional. Also, to be honest, besides oxygen, there isn't much a hospital can do for us that we can't do at home given the correct medications. I'm not prone to panicking and do have some medical training myself on top of my family history. I'm fully comfortable dealing with the breathing issues at home and recognize when to head to the ER or doctor. So my immediate answer was no, but I do think he needs an oral steroid. Dr. Heidt nodded and said, "I think that's a reasonable step." I could have cried at how much much nicer this was going then I expected.
Of course that respiratory technician who had been waiting with the treatment mask chooses then to ask the doctor (rather pointedly ignoring me) if she could start the nebulizer. I again say that I am not comfortable doing one while Trace is still breathing ok this shortly after stacking two back to back. Dr. Heidt nodded again and told the technician that doing the nebulizer was his (Trace's) parent's call.
BEST ER DOCTOR EVER. Seriously. Trace got a dose of the steroid at the hospital and was observed for a bit. We headed home in time to do another treatment around 3am at home. Trevor left sometime around 1am and Amanda came to get us and take us home (the joys of one car households) so that Trevor could get some sleep before his 6am work day. I was suppose to work at 11am, but after a week of two or so hours of sleep a night and a night of no sleep- that wasn't going to happen. Luckily I have a very understanding boss. I did go in about 4:30pm to close since I didn't want my boss to have to work the whole day through open to close. This way Trace was with either Trevor or me the whole day (and Tris was thrilled to have Mimi and Papa to himself for a day after getting a surprise sleep over).
Saturday night was a little rough. Besides one serious scare in the evening when Trace had ran around little too much while shopping and set off a flare (which had us halfway to the ER before the inhaler kicked in and he coughed up a mucus plug) we were ok. We did have to do some closer together treatments but we got through the night. I worked Sunday. Probably shouldn't have because I'm feeling worse and worse but after only working a partial shift Saturday I didn't feel like I could call in Sunday. Not sure if it's this cold (which I though I had kicked but I was running a fever again Sunday morning) or if it's just from being run down from lack of sleep all week. Sunday night has been about the same (it's 2am now and we just did our 3rd treatment since bedtime). Tristian's cough is getting tighter and tighter so I'm concerned he may be going down the same flare up road as Trace.

Planning to call the pulminologist first things in the morning and try to get the boys in to make sure it's not an infection and see if Tris needs to be on steroids too. I don't like putting them on oral steroids if it's not absolutely necessary but sometimes it is.

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