I know this feeling – and it scares me…

Today has been one of THOSE days. You know, the day that you SWEAR you’ve lived before.

It started last week. The cough we hoped would go away.

An ear tube that they put in last March fell out about 10 days ago and (shockingly) led to an ear infection.

Large doses of strong antibiotics were prescribed. We thought she was on the mend.

“Thought” being the operative word!

M and I went away for the weekend. Couples massages, uninterrupted dinner in a restaurant , a fancy, schmancy hotel, topped off with some fun shopping and walking around quaint old town St. Augustine late at night. So fun. Soooooo fun! We also attended an Adoption Seminar, but that should probably be a post on its own.

S went to my mom’s house for the weekend. Where she subsequently forgot she was potty trained AND her cough was increasingly worse. My poor Mom!! I owe her dinner or a vacation, or at least should pay to clean her carpets. S coughed a little Friday night. A lot on Saturday and last night, well – lets just say I’m running on fumes. No sleep was had by all. (Well M slept, but S and I didn’t.)

She had a coughing fit so bad that I thought I was going to have to call 911. Not kidding. It was a terrible, horrible, no good, very bad night. But strangely I’ve been here before. S has been here before too. And it just plain sucks.

We had an early appointment with her pediatrician and after testing her for the flu and RSV and giving her a nebulizer treatment, her oxygen sats were still at 93 and little air was moving on her right side. So to the ER we went.

As you can see, this is the face of a kid who feels awful! My poor sweet girl!

Her oxygen sats were better by the time we reached the ER (95). We went for for a chest x-ray and had another stronger breathing treatment.

Doctor said no pneumonia which was great news! Called it bronchitis with some viral component because the antibiotics weren’t working at all. Her ears were better, but since S is allergic to an entire class of antibiotics, the usual ones that would work, were not an option.

So $175 later (up from 125 last year), we were sent home with the exact same treatment plan that we left with.

And S still sounds awful.

As annoyed as I was about paying the 175 dollars, I’m glad she doesn’t have pneumonia. However, M took a positive spin on it saying that with the higher ER fees, at least we will reach our out of pocket maximum sooner this year….always the optimist – that man of mine….

Mystery Not Solved

Oh my sweet girl! Last night was pretty rough on us all. Not much sleep to be found...note the bags under her eyes.

I awoke to her wheezing and rattling this morning. Not good. After not eating any dinner last night, she asked for pizza for breakfast. I happily complied since it's been days since she has really eaten much. (M said that I took away one of those college "firsts" - eating cold pizza for breakfast! Oh well! She ate!) She lost a pound over the last week!!!

Put a call into her pediatrician and her pulmonologist (which reminds me that they never did call me back!) Well considering they almost killed her months ago....maybe that's a good thing.

Ped called back and wanted us to come in. S was diagnosed with another ear infection last week and it appeared that the drops weren't working well and we might have to switch to oral antibiotics. I HATE oral antibiotics, especially since S spent 14 weeks straight on them earlier in the year. Ugh.

So we went into our peds office and I took these pics. (Yes, I did let her wear her pajamas in public. So sue me. They're cute, and I was TIRED.)

Trying to escape!

Come on Mama, let's go!

If you won't let me leave, then I will just hit you and tear up this paper. (This was followed by a time out!)

But I want to put the pulse ox back on! Now! Now! Now!

This was not a pleasant visit with a grumpy 2 year old and a 2 hour wait....but we ended up with good news.

It isn't Influenza A or B. Or Strep. So just a cold. No explanation for the crazy heart rate/fast breathing/peeling hand thingy. This doc (not our usual ped) also recommended that we head up to Gainesville for a rheumatology evaluation. She thinks S has some systemic inflammatory disorder. Lovely.

Her O2 stats were a bit low for S, between 95-97, but other than that...

She is running a low grade fever tonight, but we are still headed out of town in the morning. I may live to regret this trip, but it isn't really that far, and if S gets really sick, then we'll just come home.

More tomorrow.

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Quick Health Update

So yesterday I learned that S has been exposed to H1N1 at her preschool. This was distressing, but not unexpected. (I mean, where isn't the piggy flu now?) We got her the vaccine, but only 8 days ago...

When S gets sick, she usually gets into moderate respiratory distress. Normal breathing rate for her age is per min is 30. Our pulmonologist gave us an outside margin of 35. Tonight, as she sat still in my arms, S's was between 48-50.

Not good.

She currently does not have a fever, but is obviously working hard to breathe. Her little heart is racing again too because she is working hard to breathe or she's working hard to breathe because her heart is racing. I don't know.

This isn't the first time. She's a mystery.

Poor kid has a pulmonologist, cardiologist, ENT, gastroenterologist, endocrinologist, opthamologist, nephrologist, neurologist, neurosurgeon and soon a dermatologist (rheumatology and immunology are coming shortly too). We know quite a few nurses on staff in both the ER and the pediatric floor.

We have an appointment next Monday with her cardiologist to discuss whether her peeling hands and feet over the last few months have any cardiac implications. She also has an appointment with dermatology on Wed. of next week to discuss some eczema issues and further investigate a cause of the peeling hands and feet. Lovely...

I just want to fix this....and I don't know how....

Yes, I worry. Something minor can spiral out of control so quickly with S. No one knows why.

So I'll be up most of the night probably....maybe I'll go sleep in there with her - just to be safe. Hoping this is something that can wait until morning, but that remains to be seen.

Update:
I just went back in to check on S. Respiration rate is 33-37 and pulse is better. She is sweaty, cold and clammy. Will check on her again in a few.

Late Night

So, let me preface this by the fact that I LOVE our pediatrician.
Usually.
Not so much today.

The phone rang last night at 8:30 from an unknown number. I KNEW it was Dr. V. She wanted to know if S was any better and I said that she was worse. (Which M and I both agreed. She was wheezing, and rattling and coughing up a storm.) S didn't have a fever anymore, which was good, but her breathing...well...it just plain sucked!

Dr. V wanted us to go downtown to a urgent care (pediatric) center to get a chest x-ray just to be safe. So I got S back out of bed (she wasn't asleep yet) and we headed down to the urgent care center. We got there at 9 and waited until 10 to get back to a room. Can we say, tired and grumpy toddler at 10pm? Fun times.

S was in LOVE with this doctor. She has a thing for African American men (which when she dates it will be interesting to see if that continues) and this doctor was no exception. She stopped coughing and started flirting. Oh. My. Gosh. It was so cute. If it hadn't been the middle of the night, and if I hadn't been pissed we were there, and if I hadn't been so worried - I would have really thought it was adorable. (Which it was). She even followed him into his office to flirt some more. She is totally NOT afraid of strangers anymore and so I think I will need to watch her even closer now.

He listened to her and said that unless she exhailed rapidly, that he could not detect any wheezing and didn't see the necessity of a chest x-ray. And he sent us on our merry way.

At 11pm.

We were sent down there for a chest x-ray. And in hindsight I should have argued, but at the time, I agreed with the doc. She seemed fine. Ha! Little did I know...

Got home. Put her to bed. Were awakened no less than SEVEN times to race into her room to make sure she was okay. She was wheezing, rattling, choking and coughing. Terrifying stuff.

This morning she is right as rain. In a wonderful mood and just got a dose of .31mg Xopenex. And since TWO docs pronounced her fine, to hell with it...we're going back to the splash park this afternoon to play with Emi and the boys.

More later.

Oh and hopefully I'll continue to Story of S later tonight. I have some work to do for my other job first. If not today, then hopefully tomorrow. It's amazing how much time I find to blog now that I am no longer working or in school. :)

1.25mg instead of .31mg, Really?

So S has been a bit under the weather all weekend. She has been showing signs of increase frustration which we are hoping are just because she feels kind of icky. (I'm hoping it is not a sign of the terrible twos...though it could be).

Nights are the worst. We can her her rattling and wheezing. We haven't given her too many breathing treatments because a) they freak her heart rate out and b) she simply won't sit still for them without being physically restrained (which is not fun, let me tell you!).

Last night she had some horrible coughing fits that would last minutes and leave her gasping for air and her heart racing. She also had a slight fever so I decided to call the pediatrician this morning and take her in.

It a word it was ODD.

When we got there, her oxygen sats were 93 and 94 with a pulse of 120. Low O2 but pulse was okay. Blood pressure was fine too. (Sats with doc in the room. 95 and 96) When the doc listened to her - nothing. No rattles. No wheeze. Lungs "perfectly clear". Umm... really? Not to be picky or anything, but she was coughing and rattling ALL night. And now clear? ODD.

So the doc decided to give her a nebulizer treatment (which led to me restraining her and getting pinched and kicked until it was over...good times) and then recheck her sats. Sats were now 96 (no change) and her pulse was 145-150bpm (high). Blood pressures were still fine. ODD.

Dr. V listened to her again and pronounced her "all clear" again. She was retracting a bit (using her stomach muscles) though and breathing rapidly (around 47 per min, normal is 30) but doc felt comfortable letting us go home. We got a prescription for a chest x-ray (if needed) and a new prescription for an inhailed nebulizer medicine.

Now here is the kicker. Our ped was worried that S was using the .63mg Xopenex, which was making her shake, heart rate race etc. so she bumped us down to the .31mg Xopenex. I didn't fill it at the pharmacy because I didn't know what we already had at home. I got home and too my utter SHOCK, I discovered that S had been getting 1.25mg of Xopenex. THE ADULT DOSE!! I'm so mad. So so mad!

She has been getting this stuff for months! MONTHS!! Oh my gosh. We've been careful in the last six weeks or so...but prior to that, she was getting 3 doses a day!! THREE ADULT DOSES!!

I'm pissed!

Quick Health Update!

We just got back from a visit to S's favorite doctor, her pediatrician, Dr. V. Yesterday both M and I noticed that S seemed to take longer to process what we were asking her to do. When you ask her where her nose, ears, etc. were, she would look at you - pause and then respond. MUCH longer than before. It seemed to last quite a while - atleast most of yesterday afternoon and early evening. We were obviously concerned so I decided that I would call her pediatrician to see if she thought it was a big deal.

This morning when I got S up, she didn't look or sound good. She was fussy (it was early) and when she cried, she sounded like a seal. My first thought was croup. Actually, if the truth be told, it was "oh crap croup!" But she seemed to settle down. She was huffing and puffing, which isn't really normal I know...but she went with me to my weigh in appointment (down a total of 18 lbs! Yeah me!!) and then I took her to school.

Around 2:30 I couldn't stop thinking about S's delayed response, so I picked up my cell phone and it rang. It was Dr. V calling me!! No joke. She was calling to tell me that the neurosurgeon and nephrologist agreed to do a Flash MRI on S to see what was happening with her noggin. Her neurosurgeon would write a script for the MRI at our appt on Thursday. I explained what was going on with S and she wanted me to bring her in at 5pm. Just to be safe.

So....the long and short of it...

1. S has some fluid on her ears, but it is clear (not an infection) and might explain some of her delay but not all. Dr. V is going to let the neurosurgeon deal with that one on Thurs.

2. S might have croup or at least a cold. If she has any difficulty breathing again tonight, we MUST go to the ER. Because of her hypertension, treating croup would require steroids. Steriods increase blood pressure. S would have to be admitted for treatment.

3. S possibly has another UTI. We will be taking a trip to the lab tomorrow to see for sure. S is prone to them for some unknown reason and so we are suspicious since she seems in pain.

So there you go. Possible fluid is the cause of her delay. Possible croup but be ready for an ER trip and possibly a UTI.

A good time is definitely NOT being had by all.

And funny: Right as I was leaving the doc asked for my number. I said, "Come on Dr. V, you don't have us on speed dial yet?" She laughed and actually admitted that our number is the only patient one programmed on her cell phone. Yep, that's how often she calls us. At home. In the middle of the night. She's fantastic.