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Discussion Starter · #1 ·
My poor baby. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/fever.gif" style="border:0px solid;" title="Fever">:<br><br>
He's been on antibiotics for a month due to a treatment-resistant ear infection. The most recent one (the third drug) was started on Tuesday. He gets better for 48 hours or so, then declines again. Saturday night, he started getting even more irritable, his fever increased (it's been low-grade, but he's had a fever for a month straight, every single day), and he went from spitting up just a bit after each feed to vomiting ALL of his feeds. He's also rubbing and pulling furiously at his ear and nose, and obviously feeling crappy. Talked to his pedi today, who said that if he was truly inconsolable (he was), we should take him to the ER, so we did.<br><br>
He was, of course, charming the pants off of everyone there. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/loveeyes.gif" style="border:0px solid;" title="Loveeyes">: He's a very gregarious child- when we got back to the room (this is a children's ED, which was fan-freakin-tastic), his nurse walked in and he *giggled* at her. He clearly wasn't looking sick, but thankfully they believed us when we talked about his symptom history. He was still febrile, and his infected ear is still, indeed, infected. The pedi we saw is a preemie mama herself, and completely agreed that something else needs to happen since 3 broad spectrum abx haven't done squat.<br><br>
He got blood drawn for counts and cultures, as well as a urine culture (I thought DH would pass out watching them cath the poor little dude). He's slightly anemic (not surprising), and has a high platelet count and high sed rate, but his white count was on the very low end of normal (which kind of concerned me- why isn't his body mounting a response?). He got a dose of IV rocephin, and I'm taking him back to his usual pedi tomorrow to see if that helped his ear at all.<br><br>
If not, the next three things we have to look for are an abscess, infection of the sinuses, and low-grade meningitis. The pedi today thinks those are a distinct possibility, though not common in the general population, since he's not responded to treatment yet. I don't love the idea of any of those diagnostic tests (MRI, CT, spinal tap); at the same time, I'm less in love with the idea of a persistent infection in his head, KWIM?<br><br>
Ugh. Poor kid. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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OH MY!! I am so sorry that you have to go through this! I'm glad you were greeted by knowledgeable people and were in a good environment, and it sounds like they are trying to be really thorough. Still, this has got to be so tough for you, and I'll be thinking of you! Keep us posted and hang in there!<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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My 30 weeker had several ER visits, lots of unpleasant tests and procedures and several inexplicable fevers/illnesses during his first 15 months of life. Sometimes we were so discouraged and felt as if the rollercoaster of the Preemie/NICU experience would never end. It was hard to be strong during that time, hard for all of us - my DS, my DH and me. But we made it through and I know that you all will, too! Just take it one day at a time.<br><br>
Lots of information helped me feel in control (I see you're a nurse - that must come in handy when advocating for your son!). My husband was the master of positive thinking and positive visualization and I believe that this really works. These preemie babes are incredible fighters and yours has the luckiest birthday I have ever seen - wow.<br><br>
Also, for what it's worth, remember to take care of yourself. I will be thinking good thoughts for you and your family. Keep us updated!
 

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Discussion Starter · #4 ·
Thanks to all of you for your support- it helps so much! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/innocent.gif" style="border:0px solid;" title="shy"><br><br>
We saw the head of our pediatric practice Monday and he thinks one of three things is going on. Either it's a very, very treatment-resistant bug causing the ear infection (both ears are badly infected now, even after all the other meds); or it's some sort of abscess in his inner ear or throat; or he has some sort of inborn immunodeficiency. He got another dose of rocephin at the doctor's office yesterday, and one on Tuesday. If he doesn't get better and stay better, we'll get a CT of his head to look for abscesses. If that doesn't provide answers, we have to take him to an immunologist for testing for a primary immune deficiency.<br><br>
He also suggested sending us to a pediatric ENT to get him evaluated for tubes, even though he's so young. He has torticollis too, which is either from prolonged ear pain, or it could indicate there is, in fact, an abscess in his throat or inner ear. So we have to do stretching exercises on his neck for three weeks...this doc said they can use a 'neck brace' for him it if doesn't resolve, but I've only seen the doc bands, and only when there was plagio involved. He is a tummy or swing sleeper <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/duck.gif" style="border:0px solid;" title="Duck">: so his head isn't really getting flat.<br><br>
He's also pretty anemic, and his white count is pretty low for him to have an active infection. That's one of the reasons he's thinking we need to see an immunologist (high lymphocytes and lowish total WBC, plus high platelets- I have no idea what that means for him). Even for a preemie, he's getting sick too often, according to this pedi. But right now, we're going to operate on the assumption that this is just bad luck and a really bad, stubborn ear infection. They drew blood cultures at the hospital, and we found out today they were negative.<br><br>
What's interesting is that most immune system disorders are x-linked, and there are hundreds, including many that go undiagnosed because they're relatively mild. So (and this is coming from the doctor yesterday, who was wonderful) it's possible that I have one of these disorders and passed it on to Lucien. I got sick constantly as a kid, and tend to get sick pretty easily even now. It could be something quite mild and insignificant in me, but because he was premature, it's causing him problems now. The fact that I had such bad and frequent ear infections made this pediatrician think it was a strong possibility.<br><br>
It's annoying because everyone keeps saying, 'why are you BF/pumping? Obviously it doesn't help his immune system like you said it would.' <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: The #1 reason I worked so hard to continue BF was for the benefit to his immune system. What a kick in the head if my milk is sub par in that regard.<br><br>
If it turns out he has an immunodeficiency, I'll obviously need to stay home with him. That's a whole 'nother can of worms, since none of DH's job prospects have panned out yet, but oh well. My PTO balance resets on January 1, so at least I'll have some days available, if I don't get fired before then. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:
 

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Wow..... what a mess. This must be so hard on everyone!!! Tubes for such a youngster? Ouch. Poor little guy!!! And all those tests!<br><br>
It's so great that you are still breastfeeding/pumping!!! Wouldn't things be that much WORSE for him if you weren't? At least BFing is giving him an added bit of defense against whatever is going on, and it gives him that added bit of comfort when he needs it most.<br><br>
It is wonderful that you are doing everything posible to help him out... even if it means leaving your job. With a great mama like you, he sure does have a lot going for him!<br><br>
I'm sending positive vibes, strength, and hope your way.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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I hope he feels better soon. This popped into mind while I was reading your post, and I wondered if you have seen the thread in Current Events - Here is the link for hte article:<a href="http://www.sciencedaily.com/releases/2007/10/071016160615.htm" target="_blank">http://www.sciencedaily.com/releases...1016160615.htm</a>
 

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Discussion Starter · #7 ·
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<div>Originally Posted by <strong>noeonend</strong> <a href="/community/forum/post/9864762"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I hope he feels better soon. This popped into mind while I was reading your post, and I wondered if you have seen the thread in Current Events - Here is the link for hte article:<a href="http://www.sciencedaily.com/releases/2007/10/071016160615.htm" target="_blank">http://www.sciencedaily.com/releases...1016160615.htm</a></div>
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Wow, thanks- I hadn't seen it. Scary! I certainly will bring this up when we see the immunologist and/or ENT. It seems as though our regular pedi has decided to pass us on down the line to someone else.<br><br>
The good news is that he seems to feel fine. It's a step in the right direction! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up">
 

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Rachel - I'm so sorry that your LO is so sick!!! I know you said he was dealing with recurrent ear infections, but I had no idea it was so serious. Sending prayers...<br><br>
Oh, and all breastfed kids still get sick! It's not that - he's better off having momma's milk. I'm sure you are helping him a lot by going that route and that he'll have fewer and less severe infections over time because of it! The early ones just have a harder time with this stuff. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
So happy to hear he's feeling better today!<br><br>
Hugs
 

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Just popping in to offer a sympathetic hug and also to recommend probiotics for both of you due to the heavy dose of antibiotics to avoid thrush and other yeasty problems. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">:
 

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Discussion Starter · #10 ·
We're taking Lucien to the hospital tomorrow to have a CT scan done of his neck. Apparently, this (ruling out abscesses or soft tissue infections following treatment-resistant infections) is common, according to a couple of the people at the hospital.<br><br>
I'm not excited, as he'll have to get ANOTHER IV (he just had blood drawn saturday and needed to be stuck twice <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy">: ) and he'll be sedated- which I *really* don't like. They use gas sedation in babies at this hospital.<br><br>
I hate having to put him through this. They said they often try to do the scan without sedation first, to avoid unnecessary medication. But they have to use an IV contrast dye, and he WILL lose his mind over that. So I'm actually going to see if they'll use the gas before they put in his IV- no need to put him through it unless it's unavoidable, KWIM?<br><br>
We have the appointment with the immunologist next Monday. I'm sure they'll draw blood. Poor little pincushion baby. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
The good news is that DH had a phone interview for a job today and it went REALLY well. They have to check his security clearance and whatnot, then they plan to send him a formal offer letter later this week. It would involve relocation to either the midwest or the upper northwest in mid-January (brr!), but I'd be able to stay home with the babe for the remainder of the winter, at least. So that's my moment of <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin"> in an otherwise <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: day/week.<br><br>
Send us good vibes tomorrow morning- we were spoiled by having a relatively easy and short NICU stay, so I haven't had to deal with sedations or CT scans on my little dude before.
 

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I'm so sorry that your LO is having to go through so many pokes... It's so awful - I think it's a good idea to ask them to sedate him before the IV, though! If they can spare him the pain it's worth it.<br><br>
I'll pray for him, especially tomorrow morning.<br><br>
Hugs to both of you!
 
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