Cassie Shepherd

October 23, 2015

Not Sure What To Do


Have you ever had something bothering you about the health of your child, but you aren't sure what it is, let alone how to resolve it?

Last Monday, we had a scary and unpleasant episode (if that's what you want to call it). I noticed Emily had a blotchy, almost purply tone to her skin because she was sitting next to Addie - who looked normal. A nice warm peachy color. Emily had been unusually fussy all day and after a few quick google searches, I compared her skin with pictures of someone with poor circulation and that was it. Her breathing looked a strained, but she wasn't lethargic - just clingy and fussy, but I could definitely tell she didn't feel well. She kept saying hurt. But couldn't show me where. Mitch was working on our Mapleton house, but he dropped everything and came right home. He pulled out his oximeter and stethoscope and confirmed her oxygen was too low. So, we packed up, called Mitch's mom and got ready to take her into the ER. Right as Mitch's mom got here we noticed her color was starting to get better so we re-checked her oxygen levels and she was back to normal. She's been fine ever since.

So, let's back up a little. Last May, Emily woke one morning with a slight wheeze. She'd had a cold and a chronic cough during the spring months (which I attributed to Utah's fabulous weather conditions) so I wasn't too concerned. It was actually the following week when her right eye suddenly went lazy that I called my pediatrician and we took her right in. Her diagnosis was a sore throat and a viral infection that should clear up within 2-3 weeks. And, her lazy eye, well, that's turned into a whole 'nother story. (Blog post on that coming soon.)

Four weeks go by and her wheeze is still there. And, for the first time in her life, I can tell she is losing weight or at least not gaining because her and Addie have been identical in growth patterns. And, I'm not exaggerating, like almost freakishly identical down to the same ounces. That is, they've been identical right up until this wheeze appeared. So, I call the pediatrician. They said no reason to worry and it'll clear up soon. A few weeks later we were told by an eye doctor that Emily needed an MRI to rule out a brain tumor because of her eye problems. I'm freaking out a bit because I didn't really want to be putting her under anestheisa if she has any underlying lung conditions we weren't seeing. So, we took her in for a lung x-ray and everything checked out fine. Heart and lungs. All a-okay. Diagnosis was still viral infection. Going on 2 months now. (And, in case you're wondering, we never did the MRI.)

Moving on, Emily had lazy eye surgery the first week in August. I ran all my concerns about her breathing by the Nurse Practitioner and Anesthesiologist. The NP showed some concern that it had gone on for so long, but she assured me it wouldn't interfere with the surgery. The anesthesiologist told me children are basically sick 364 days a year and that would leave only one day to operate on everyone so there is no reason to be concerned about whatever virus she might have. And that it definitely wouldn't effect the surgery. He gave me all the reassurance I needed and they wheeled her away to the OR. Everything went well with the surgery (in regards to her breathing).

Four weeks later we took her in for her two year well check. At this point, Emily still had the chronic cough and the wheeze and she is obviously much smaller than Addie. I was really anxious to see what the doctor would say about her weight and the wheeze that was supposed to clear up in 2-3 weeks and was now going on for 3 months.

Well, he didn't say anything. In fact, he'd totally forgotten (or lacked to read her chart) that she'd had any "viral infections"/lung x-rays/wheeze/lazy eye. In fact, he even asked me if I'd noticed any lazy eyes and I was like uh....yeah....she had surgery 4 weeks ago - look at her red eyes! She'd dropped from the 25% in weight down to the 3% and totally fell off her curve. Addie was right on her curve and exactly where I would've anticipated Emily to be. I mentioned a concern that perhaps Emily was using more energy to breath - therefore effecting her weight - and the doctor said, "Hm. Maybe." Obviously I wasn't very happy at this point, but what really bothered me was he basically told me until Emily was hospitalized for pneumonia or something serious happens, which will most likely be during flu and cold season, there is nothing they can do about it.

And, maybe he is right, maybe there isn't anything that can be done, but I was so disappointed to hear there are no preventative options to even explore. Who wants to react to something like this when their child is in the hospital?!

So it's nearing the end of October now. All her symptoms are about the same, which I view as a good sign actually. Emily still weighs about 22 lbs and Adalynn is 26.5 now. Addie is growing well. Emily, looks tiny and definitely doesn't look as healthy as Addie. I hate writing that. But, in everything else - they're both progressing and growing really well.

Mitch and I have been toying with the idea of taking her into a pulmonologst, an ENT, or even just a different pediatrician for a second opinion. But, it's been one of those things that keeps getting put on the back burner. I don't know who and I honestly don't know what they can do for her without extensive testing and so naturally I wonder if it is worth it. She's experiencing symptoms of PSTD since her surgery in August and so I hesitate to do more than necessary.

She's never shown any lethargic symptoms and she acts 100% like a typical 2 year old so I keep thinking that is a really great sign. I am most concerned about her lack of weight gain and then this recent episode with her oxygen is weighing on me. It's hard to know if this could've happened before in the past and we just never noticed. I never would've realized had she not been sitting next to Addie with nothing on but a diaper. And who knows, it could've just been a total fluke -we could've not gotten an inaccurate reading - do you know how hard it is to use an oximeter on a wiggly 2 year old?

And, when it rains, it pours, right? On top of everything, Emily's lazy eye came back this weekend. This is all happening within days of Addie's eye surgery and her whole post-trauma experience where she lost consciousness after her surgery (blog coming soon on that too). It has just felt like one thing after the next. Not to mention I am trying to pick out all our countertops this week because our cabinets were installed today (hallelujah - there is one fun thing in all this!)

Anyway, it's Friday and on Tuesday we were told Emily's next step (since her lazy eye is back) is to try glasses. So, we're trying to find and get a pair ordered (which is more tricky than you might think for a 2 year old). And, of course, Mitch and I are back to trying to figure out which doctor we should take her to for a second opinion regarding her wheeze/breathing/cough/oxygen/poor weight gain/whatever this is ordeal.

Stay tuned.

2 comments:

  1. It is the worst when you feel like something is wrong, but no one will help you figure out exactly what. You guys have been through the ringer. I hope she starts to improve soon.

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