Saturday, December 27, 2014

Not Content

Pretty sure I'm going to ask/beg/demand for more. I've got half a million doctors appointments next year and not knowing is driving me batty. I want more testing. I want more of my issues to have an answer/diagnosis. I want ALL the testing but I have no clue where to begin. I know I can add Restless Leg Syndrome (last night was BAD), but what about the rest. There are SO many that go hand in hand with POTS/NCS/Dysautonomia that I'm either symptomatic for or just plain don't know anything about. I need to research.

Last night was so bad. Coming back from the mountain on Christmas irritated my legs and last night I just couldn't deal. I couldn't find any relief. No matter where I moved my legs. On top of that, my right arm is having more numbness and tingling issues (worse than the other limbs). I'm so over all of this. I feel like I need to sleep for a week to let my body heal. I've definitely been doing WAY too much this winter.

Tis The Season

Of course I'm behind the camera this year. Happy Holidays/Merry Christmas!

More From J

Christmas is over finally over. JSmiley is doing a little better. Still coughing. Not sure how much better. She had her follow up on Tuesday, apparently by then she had a double ear infection. The ER peds doc initially missed it, the doc on peds spotted it and the ER peds doc came up and agreed. By Tuesday,her ped looked and said there was infection in both ears but no redness/inflammation. She still had a wheeze and tightness on Tuesday. We were home by 5 on Sunday with oral antibiotics, oral steroids and a box of albuterol and nebulizer.

Tuesday he said since this is the 2nd time she's needed breathing treatments (she had bronchitis that wouldn't go away when she was 1 and needed treatments since her O2 sats dropped into the high 80s then too) that they usually diagnose asthma after 3 attacks so one more. He said it most likely is asthma though. Right now they're still calling it reactive airway. It generally only happens so far when she's really sick but may have to do treatments before major activity. She didn't get any refills on the albuterol but is on a 10 day course of antibiotics with a second 10 day course waiting at the pharmacy in case the first isn't enough. Plus she has 2x/day inhaled steroids. Kind of like an asthma inhaler, only for the nebulizer. She has a 6 month supply but it's confusing me. The doc said "Indefinitely, until she's better." Which is it? If she's better by new years, discontinue? Keep going through winter? Keep going indefinitely, at least for a few years? She's already annoyed with it, even though she does so well. I'm assuming when she's old enough, if needed, it'll go from the nebulizer to an actual inhaler. Right now she doesn't really get some "inhale and hold" instructions. And if she does, getting her to follow bodily instructions when she doesn't want to is pointless. The nebulizer is much more effective at the moment.

I'll probably take her in for a recheck in a week to see if the tightness is resolved and the infection is gone. Especially if that cough isn't resolved. Anyway. I made a collage of pics from all of this since I can't effectively post multiple.

Top Row:
1. J's stats after the first breathing treatment. Her hr wasn't affected by it, it was up from respiratory distress (it was 140 here but was higher periodically). One dose of albuterol and only 92.
2. She doesn't LOOK all that bad here. She's had most of her tests, IV, blood work, etc. This is either right before or right after xray.
3. All tests done, one breathing treatment, waiting on test results. She looked so peaceful. However, she curls her fingers in sleep so her pulseox kept losing the feed and alarming. I barely got to sit down.
Middle Row:
1. Despite a breathing treatment, her oxygen starts dropping again so they give her some oxygen to help. She HATES the cannula. HATES. I had to hold it out of her nose so it blew in but the tube wasn't in. At one point I even taped it to her pacy. Which yes, she's 3. But it was a comfort for her while being used as a pincushion.
2. Exhausted after a long (half) day in the ER, finally in Pediatrics.
3. Feeling much better the next day.
Bottom Row:
1. Playing toys between breathing treatments.
2. Someone gets to go home!
3. A pro at breathing treatments

Saturday, December 20, 2014

It sucks when it's your child who is sick.

I still need that vacation. I've been at the ER since 7 AM. Not for me, for JSmiley. Yesterday or the day before she started out with a mild cough, that irritated her throat (I'm not sure if you could classify it as a legitimate sore throat as it only bothered her when she coughed). Last night she seemed to be a little off with her breathing but settled down and wasn't acting weird,  just coughing and such. Still jumping, running, playing. You know, normal hyper 3 year old behavior. Woke up around 4:30 and she was burning up and visibly breathing weird. Likeshe had to work for it. Gave her meds (for the fever) and took a bath and got dressed. She still seemed MOSTLY fine, though a bit clingy. She asked for juice and was watching a cartoon with Big Daddy but I just didn't feel right not addressing her breathing so I drove her to the ER sans bath.

In triage, they had trouble getting her vitals (except temp, it was down again) so they paged respiratory therapy and the doctor. RT gave her a breathing treatment first,  I think before the doctor even made it in. Her sats pre-neb were 90-92 sometimes dipping into the mid/high 80s. During the neb, they rose briefly to 97 but as soon as the albuteral was done,  it dropped to 94. She was also breathing hard/fast. About 40 respirations. Still sounded bad and sats wouldn't rise. They gave her an IV,  drew 3 vials of blood (no sign of infections), 2 throat swabs (RSV and Flu - both negative) and 2 xrays ("clear" - no visible pneumonia). Less than 3 hours later it was dropping repeatedly to 86-88 so they tried oxygen (hint, 3 year old don't like nasal cannulas, you have to get creative). All of the test results were fine but clearly something is wrong. They decided to admit her and added a "continuous breathing treatment " for an hour. That plus oxygen brought it up but as soon as the breathing treatment stopped and the oxygen was moved, dropped. They considered transferring her to a bigger hospital 30ish minutes away but with the minimal improvement they said they'd keep her. They gave her steroids and plus the oxygen, for a while it stayed pretty consistent in the 97-98 range.

She got saline, rocephin and potassium (with dextrose and saline) plus 2 more breathing treatments. She sounds a million times better, though I can still hear her wheezing from halfway across the room and her sats are still in the low 90s. As long as it's above 90 they say they won't give her more oxygen though which is bs. A friend of mine is an RT in NY and she's pretty outraged but apparently the staff here keep brushing it off. I will definitely be having more words with some doctors tomorrow. The nurses are just following orders. Though I'm not thrilled with the little bit of info they are forthcoming with. Just like I don't believe this is asthma, which they keep insisting, despite following it up with "but they can't/won't diagnose before 5". I just wish I knew what was wrong and how to help. She clearly doesn't feel well. Cough, sore throat, ear infection, plus whatever is messing with her lungs/breathing.

She's been such a trooper, even with the IV.  The pulseox annoys her so she keeps messing with it but the only thing she really flipped out on was the nasal cannula. She did not want that ANYWHERE near her nose/face. Anyway, its almost time for round 5 with the albuteral so, more later. I have WIFI here so I can post all day long (as long as my tablet is charged). Hopefully tomorrow brings health and clarity.

I'd post pics but they're all on my cell phone so maybe tomorrow. She's such a fighter but it's all so cute and pitiful. I just want to snuggle and love on her. She's so touched out though. Anyway. Adios.

Food Allergies Suck

Apparently I need to further restrict my diet. Not necessarily to lose weight but because I legitimately NEED to. Big Daddy made me an omelet for dinner two nights in a row (at my request). Dairy free though I'm sure cheese and sour cream would have made it delicious. Obviously I'm still missing most dairy. I realize that I am better off without it and dairy free substitutions are generally just as good (add a splash of lemon juice to df cream cheese, my mini blueberry bagels with "cream cheese" - rare - tastes just like the dairy version, and almond milk is yum). But anyway. Yesterday, I had GU issues but mild and brushed it off. Today. O. M. G. WHY on top of everything else.

In which, I need a vacation.

Looks like I'm just going to accumulate blog posts since WiFi isn't working.  I'll just mass post later. Today was a meh day. Big Daddy's mother is in ICU with pneumonia and infection in her blood. It's awful seeing her struggle like that. On top of that it's just been an over all stressful week. Well,  really it's been a stressful month/few months. I need a vacation or something. I can see why some people legitimately NEED drugs. I swear, if I drank, I'd probably be drunk. Or medicated but getting needed medications is pretty much like pulling teeth. I don't even try. I probably need to get back into therapy but that will probably be in the new year.

My insurance finally got reinstated (accidentally missed some paperwork when the whole family had bronchitis and when I called them they said it was all up to date, yea, no. I sent the paperwork in November and it just got reinstated today or yesterday so I had a bunch of appointments to schedule that I'd had to cancel (see previous post, 3 were scheduled, 2 I had to schedule and I have to make dental appointments for all 3 kids. I'm probably forgetting something. Ugh.

Speaking of appointments, I probably need to find my wallet. I only carry it when I have appointments so it kind of gets lost between them. Which is probably not the smartest thing to do considering it's got all our insurance cards, our social security cards and my ID/drivers license plus my birth certificate. Oops. Oh well, it's in here somewhere.

I don't think I mentioned it but I finally got my wisdom teeth removed! All four plus the molar the dentist (not the same one) left a cavity in. I was in so much pain last year and again this year. This year however the bottom right wisdom tooth (the impacted one that did the most damage) got accessed twice. Of course my insurance only covers emergency dental which yay it was covered. I'm so glad they are gone. SO glad. So now my migraines are simply migraines, not a result of my teeth. JSmiley needs some dental work and SDiva does as well. They've been talking braces for months (probably over a year). Even more so now because of the fall she had this summer.

I'm so exhausted though. I've been up and a bit more active. Just a bit, but it's still exhausting. The thought of all those appointments back to back is daunting. Appointments drain me. I don't know. I just feel so blah. I'll be back later.

I Guess I Really Needed To Get That Out

I know it's been a while but I'm still having problems with my cell phone, and it will probably be February or March before I get a knew one considering we are a one income family. My phone drains if I'm on it at all, even when I'm not on there much. It's a poor excuse but I get so little time on it then have to charge it for 4ish hours before I get to use it again. Right now I'm on my tablet but connection is shaky at best. I'm attempting anyway.

I hope that I'll be able to post but so far it isn't even letting me download the blogger app. Hmph. Anyway,  not much has happened in the last little bit.  I finally got both my paperwork and appointments for Vanderbilt. I am a bit apprehensive to say the least. I always get anxious about doctors, especially new ones.  I've had such a long journey just to get the first diagnosis and had to pretty much fight for each of them,  tooth and nail. It took 13 years and multiple doctors just to get the NCS diagnosis. I mean really. 3 states (I live on the border so I see doctors in 2 states plus I lived in South Carolina the first 5 years of that 13), 2 Emergency Rooms/hospitals in 2 of those states,  2 pediatricians (since it started at age 10), one family practice doc, one FNP, 3 pregnancies with 4 OB/GYNs (plus the last ones partners since you had to see them all AND their NP) and TWO CARDIOLOGISTS. You know the only people who gave a damn/acted like it was actually something, instead of brushing it off was 2 of the many OBs I saw. The 3rd and 4th. My last 2 pregnancies. THEY sent me for testing. They referred me to cardiology. But it wasn't until after my last pregnancy, when I had to literally argue with my cardiologist that it wasn't pregnancy related, wasn't anxiety, wasn't nothing. It was something and needed treatment. But all the doctors but those 2 OBs just brushed it off. I'm literally afraid of going to the doctor most days. Before most appointments, I get so anxious that they are going to dismiss me, or tell me that I am not sick/don't have xyz. Even the two doctors I see now, they KNOW I have a LOT going on and know that there is more they haven't found. I'll give my EP props, he's at least sending me to Vanderbilt. But I just feel like they aren't in any hurry to investigate further themselves. And I'm afraid I will get the same at Vanderbilt. I'm hoping for a positive visit but I'm also afraid.

I've forgotten when my appointments are but I think it's mid-late April. I'll have to dig out the paperwork. I just hope it shows stuff. I'm always afraid they won't find anything. Or they'll brush off test results. I mean, my cardiologist thought all my testing, the echo,  the stress test, etc,  that they were bad/abnormal for stupid reasons instead of an actual medical problem. My neuro thought I couldn't possibly have narcolepsy even with the test results showing classic positive. I'm so bitter because of all of this. The doctors who didn't believe me,  the ones who were downright hateful, the ones who tried to come up with alternative explanations. I admit it.  I am bitter. And it sucks. I wish it were easy. I wish I could just,  like,  give one vial of blood and have some computer analyze it and tell me what all is wrong. Man,  I wish it was that simple.

I don't even really mind the testing. Most of it is fascinating (if sometimes a bit painful). I mean, the tilt test sucked but was still interesting. Echoes and other tests like that were interesting. Seeing your heart on a screen is just as interesting as seeing a baby via ultrasound. Watching heart rhythms. Ok, so the testing for neuropathy sucked. But it was cool. In theory. I'm no sadist. Getting shocked repeatedly in my arm and leg hurt. The double biopsies above my ankles... Still got the scars. But the instruments and procedures as a whole are cool. Sleep studies, I mean, studying brain waves and stuff. It's fascinating. I just don't like when Murphy's Law rears up and bites me. I *know* I'm sick. I just hope the testing shows.

I have 3 appointments in January, ENT, Neuro, and Gynecology. One in February, Electrophysiology. Then Vanderbilt in April. I want to ask for more testing here,  like something Vanderbilt may not do. I don't know what though. I just feel like nothing has been done for a while. I want testing for the disorders that others with Dysautonomia have,  like Sjergens, or MCAD/MCAS/etc, or EDS,  or well, you get the picture. I want a non doubting doctor to review the tests I've had in the past and tell me, now that they KNOW something is up, we're those tests really "fine" or did they just say it was because they used an alternate explanation, like my cardiologist did on all the tests before the tilt. I already know he brushed off two tests,  possibly more. So what did they REALLY mean. I need to get copies of all my records to have on hand but with that many doctors, it's a bit daunting. I don't even remember the pedi in South Carolina. Plus,  do they even keep records that long? That began over 15 years ago. I haven't been in SC as a patient in 10 years. So how the hell do I get or even FIND those records. And considering my shaky, premature birth and broken blood vessels and spending weeks in the hospital, I want THOSE records too. So 2 hospitals in Illinois (possibly pediatric records since I lived there a while), 1 in South Carolina, plus that pediatrician, 1 in Tennessee plus all those doctors and the ones in Virginia. I know all the local ones. And the hospitals. But how long do they keep records. I'm coming up on 26, in May. Plus I'm pretty sure you have to pay them to give them to you. It seems a bit daunting. And at least some of them will likely piss me off (the docs who brushed me off/yelled/said it was anxiety etc).