Calling all experienced trach/vent moms..confusing child here

[TeraNicole]

Hey everyone! I have a very confusing situation and I think the ped is as stumped as I am. Bear with me, this is going to be long.

It all started six weeks ago Zachary started on medication for hypothyroid. Two weeks after starting the medicine, wierd things started to happen. First, the oximeter started to alarm saying his sats had dropped, sometimes down into the 70's, yet he looked fine to me. I could mess with him or it and it would come back up. So I thought I had a faulty machine and just dealt with it for a couple of weeks until I asked Apria to bring me another. I got the second oximeter about 3 weeks ago. Right after I got it he got sick. He had bright red bloody secretions and a trach culture came back with proteus mirabilis and ecoli. He did 10 days of Augumentin and started to act like he was better but the oximeter was still acting up. This is where it gets confusing. For the last 4 weeks he has also had alot of swelling in his legs and feet which I know now was a side effect of his thyroid medicine. Thats a side note I guess. So a few days ago the bloody secretions are back and he's acting sick again. Take him to the ped for tests because I am clueless. His sats are awful and he's on 2 liters just to get a 92. Zachary is normally room air. His Co2 is excellent at 29, his xray is clear as a bell and his lungs sound good. His white count was normal so he can't be sick. If he was, his Co2 would be up. The only things we found were hemoglobin was low at 9 so he's anemic and his platelets are very low which explains the bloody secretions. His urine was clean of everything and normal. But his sodium was up. The ped says that she thinks he's a little dehydrated, even though his urine was not concentrated and she wants me to do another 10 days of Omnicef because she thinks there may actually be something on his xray that we cant see. I just dont buy that. I dont think he could be sick with a great Co2 and clear xray. But then why in the heck are his sats so bad? We did another trach culture so we'll see what it says but I just dont buy that he's sick. His vent settings seem good since his Co2 is good but whats going on with his sats? Also, he shouldn't be retaining fluid by swelling if he's dehydrated.

Is everyone confused yet? I am and I dont know what else to try for him. I went ahead and started the Omnicef but I just dont think thats is. He doesn't seem sick now. He's been smiling and laughing. Secretions are normal white/clear and the only issue other than the sats are his allergy runny nose.

Does anyone have a clue? Any ideas what I can ask to be tested?

[KJKK8437]

Make sure you have your new monitor tested side by side with one in your pulm or ENTs office (one monitor on each foot). Fluid retention or excess fat or anything that puts more between the probe and the veins can cause false low readings. We really struggled with this issue. (We have a Nonin 9600, and we have heard that we are not the only ones to have had this problem, per our nurses.)

I don't know that this is the answer to your problem, but you should rule it out, just in case. One clue that your monitor may not be picking up ideally is if you leave the probe on, but pull the cord from the monitor, then plug it back in after a few seconds. If it reads higher for a few seconds, then drops, you probably have a sensor problem.

Our situation got so bad for awhile that the pulm wouldn't let us use the monitor for awhile, deciding that visual inspection was more accurate. We finally found a monitor spot just below the knee that would pick up, and our lives improved.

Anyway, I don't know if this is what is happening to you, but it can happen. It isn't the monitor, or the probe, but how they are picking up the child's signal. Hospital probes are much less susceptible.

If you want more info on the problem we had with Alex about this, please feel free to send me a PM. We agonized about this for months, so worried about him, to find out that it never was anything at all. His sats read anywhere from 77-92, with flashes of things higher when we fiddled with the probe. It was stressful and frightening. No matter what the cause, I do understand the feeling.

[TeraNicole]

Thank you Karen! See thats what I think is going on. I did try my oximeter (Nellcor) and the peice of junk they brought me at the same time, one on each foot and they were exact. Zachary has very fat feet, so fat I cant find shoes to fit him. He's overweight and as big around as he is tall. I just dont feel that his sats could be so bad if his Co2 and xray is normal. Makes absolutely NO sense. Another thing that strikes me as wierd and I didnt mention it but no matter what I put his O2 on, his sats dont move much. That is not normal either. The ped wanted to put him in the hospital which I told her was a little over the top considering I have the stuff at home that they have and what else could they do? Nothing. I am going to ask Apria for yet another monitor. My ped's office oximeter was running high 80's yesterday and I told her, look at him, his lips were beautiful bright pink, cheeks were pink. That was NOT right.

Thank you for assuring me that I am not crazy!! I would love to hear about where you can get a reading on the knee area. What kind of probe do you use?

[KJKK8437]

I don't know that the knee works for everyone. We wrap the sensor about halfway between midcalf and the knee. We use the oxisensor II N-25 probes, plus tape to hold it on. The lights for the probe are on either side of the midline of the back of Alex's leg.

We don't need to do this in the hospital. In fact, in the hospital, we get a better reading on the foot (with tape). Our pede was never able to get any reliable reading from Alex in his office. We only figured this out by taking our oximeter to the pulmonologist, where they put their probe on one foot, ours on another, and watched them side by side. Hospital-grade said 97, ours started there, then dropped and never went above 87. We had two Nonins, thinking ours was broken. No change. What was confusing is that it worked on me, so I thought it MUST be right. What broke the logjam for us in find the right spot was that the monitor didn't work well on DH. (He's a hairy guy.) He couldn't get a signal on his foot, so he practiced on his own limbs until he found a spot on his leg, and matched it with Alex.

Maybe they can do an outpatient monitoring for a few hours on a side by side? Also, see if you can get a "spot check" on the forehead, the thumb, or the earlobe. If you see a flash of a high number, I would be inclined to believe that you need to ask more questions.

I think you are right to pursue this, and I don't think you are crazy. I think we put too much faith in technology sometimes. When it works well, it is great, but if you have nurses, or sometimes doctors, that won't look past the monitors to see what their eyes are telling them, then we have issues.

Does your child have retractions? rapid breathing? flaring nostrils? Wide eyes? flares below the ribs on the waistline? Any sign of distress?

[TeraNicole]

No signs of distress at all. He's on a vent and his pressures are normal. When he's sick or his Co2 goes up, he does this gasping thing with his mouth. Not doing that. He's acting normal, his sats are just off. Day before yesterday, as soon as it turned on it said 100 then quickly dropped down to high 80s. It has been doing that alot, both of them, our normal monitor and the borrowed one. I am going to see what I can find tonight. Zachary's fingers have never been reliable in the past because his temp is always so cold. I'm just at a loss. The ped definitely can't look past the numbers at what his color, etc looks like. There isn't a way to do a blood draw for an oxygen sat like they do a Co2 is there?

[drct1245]

Can you use the sensor on his finger/hand -?-

If they think there is something they can't see on the xray, is it possible to do a MRI - would that help??

I don't know either. Wish I could help.

[lil' G's mom]

Have you tried his big toe? My son has really fat feet also and sometimes we have to use the toe... and this is with the hospital oxmeter.

[scm]

if he has excess fluid in his legs and feet, he could be retaining and possibly in his lungs too. That would make his sats go down. You might not see that in an xray. Have they tried a diuretic (lasix, aldactone, diuril) to see if it helps?

I am normally hesitant about going in to the hospital, but on the other hand you may find the answers you need. If you go that route make sure you have a plan in place. You will have access to iv medications and accurate monitoring to see how he is responding.

for example: he could get a dose of iv lasix and see if that improves his sats, it works very quickly you would find out right away. If that did nothing, move onto the next thing.

also, you could get a blood gas draw- that would tell you if his sats are correlating with the external read you are getting from the monitors.

good luck. I have been there, and pulled many all-nighters wondering if the problem was the machine or my baby

[JWorthington]

I'd be confused too, but Christina's suggestion sounds good to me. Sometimes we rely too heavily on the technology. I hope it works out, update when you can.

Juliex

[TommysDad]

Just catching up on the boards and saw your problem. You've gotten lots of great advice. What's the latest culture show? How's Zachary & his secretions now? Something must be going on if there's blood in the trach. Have you called the pulmonolgy department and explained everything to them. Maybe they know something because they are the specialist.

~Maggie