Wednesday, December 20, 2006

Em has a Mic-Key

Everything went well! Yay.

Last night we got a call saying to check in at 1:00 p.m. and surgery would be at 3:00 p.m. We made Emma NPO after 9 a.m. We checked in got back onto the peds floor with some nurses who knew us (there first comment was "she's back AGAIN?"). Thiis time we were in a room with a roomate. Another baby younger than Emma it looked like. I don't think the parents spoke much English so we didn't really talk. Just the obligatory nod and smile of understanding.
Emma definitely is aware of what is going on now. She knows the hospital and she knows the rooms. It's really sad actually. She wouldn't let us put her down and cried/screamed/whimpered everytime I went back in her room. We spent most of her pre-op time walking the halls of the peds unit. A volunteer gave her a book donated by a family who had lost a child. She really enjoyed the book. she also got an octopus stuffed toy that squeaks and rattles. It had a sticker that said "I squeak and rattle" so we put it on Em's forehead. It was pretty funny (and accurate at the time). She got her I.V. which of course was a nightmare. I was hoping they would wait until she was sedated but orders were written for pre-op and turns out the OR was running late anyways so it was probably a good thing. She finally did fall asleep RIGHT before we headed down to pre-op.
They took us down around 3:30 p.m. A half hour past when her surgery was scheduled. We waited around down there talking to nurses and the anethesiologists (same as last time). She finally went in for surgery around 4:45 p.m. She liked the anesthesiologist and didn't cry when they walked her back. We headed to the waiting room and figured on about an hour. Sure enough an hour later at 5:45 p.m. Dr. Duh came and got me and brought her Mic-Key box out. Explained some things and then brought me back to her. Emma did really well during surgery and being extubated. She did require oxygen for some time as she was in the low 90's for awhile oxygen saturation wise. After about half hour Sean got to come back too. By then she was stable and only moaning a bit. She had a good bit of tylenol in her but she is always weird when coming out of surgery. Somewhat moaning/crying/fighting. After an hour we went back upstairs.
Her button looks GREAT. Some redness but that's normal. SO much better than the long peg tube hanging down. Also they burned some granulation tissue with silver nitrate while in there too. She was going to be started on pedialyte. 30 cc's/hour for one hour and then onto formula 30 cc's/hour until morning. Sean and I had already decided I wouldn't stay tonight. We had a rough night last night. She was refluxing bad which she hasn't done in awhile. We think she aspirated (her lungs were gunky sounding today before surgery). I was up with her most the night and "slept" on our couch with her on my chest and every now and then her shrieking/crying from pain and arching her back. Poor baby. I need my sleep badly so I came home. Also I KNOW I couldn't sleep with a roomate. I HATE leaving her there but really I need my sleep today. I'm like a walking zombie. She was crying a bit when we left but her nurse was with her so we felt okay. I'll pick her up before 10 tomorrow. Hopefully she can get some rest and some good meds while she is still there. Here are some pictures from today.

Waiting to go down to Pre-Op.

"I speak and rattle!"

Em's new button.

Tuesday, December 19, 2006

Hospital: Take 6

Well I’ll touch on me first. I saw the cardiologist. We went over a bunch of what if’s but not probabilities. He set me up for a 24 Holter test with a small battery pack to wear around my waist and 5 electrodes for 24 hours. If I have an episode I’m to press a button and record in a diary the time what I was doing and symptom. The monitor records constantly but this helps them to identify if the symptoms are related to the heart. Probably not but we’ll try it. Surprisingly yesterday was a really good day and so far so good. I have one very small short dizzy spell last night while cooking. Go figure! We may be doing the tilt table test next to see if the results vary. Otherwise I wait to hear from neurology to reschedule. My surgery was scheduled for today. It’s somewhat sad but somewhat a relief. I’m glad I’m not having major surgery but like I’ve said before it’s at the price of not knowing what’s going on with me and having no real explanation!

Onto Emma. We’ve been having problems with her Y-port attachment at the end of her peg tube. This is the piece that has a “female” end which the “male” end or “Christmas tree” part of the tube on the feeding bag plugs into. It is stretched out and the male end keeps sliding out and leaking. We’ve been taping it which has gotten old quick. We spoke with Em’s main G.I. who said call Dr. Duh and see about getting a button now since we’re having problems. So I did. He likes to wait about 12 weeks before switching to get a good tract formed but we discussed doing it earlier.

Anyways he had a no show for a surgery pre-op yesterday so she is booked for tomorrow for the OR to have her peg tube switched out for a button. YAY. We have to be at Bellflower at 10 a.m. in the peds unit. UGGH. Hopefully it’s a day surgery barring no complications. She has to be NPO after 8 which are fine since that’s when we unplug her for her 4 hours anyways. She’ll go under general once again. Prayers, that all goes well and that it is uneventful day. We are so thrilled to be having this done right now. The peg tube has been okay but it is somewhat of a pain and it will be nice to have a low profile button instead of a tube especially while she’s not hooked up!

This is what she has NOW

This what she will be getting TOMORROW

Friday, December 15, 2006

No news is good news I guess.

We're just plkaying the waiting game. I have had a few "good days" the past few days. Meaning not too manbyd izzy spells and no real BAD headaches. And no falling. But I woke with a major headache today so we shall see. I saw my general practitioner today. She is stumped as well. she did a baseline EKG which appeared to be just fine. She also put in the referral to the cardiologist and I need to call later today and get an appointment. So now we want to see the nuerologist and the cardiologist. She mentioned a "tilt table test" . I guess it's just that they strap you to a table and keep turning and tilting it to try and get you to a) pass out b) have a seizure or c) do nothing. Sounds like a hoot. ::sigh:: She's not sure if that's what they'll do but says it seems like the next logical step. So, still waiting. Everyone is too afraid to prescribe anything for the headache or dizziness or even my sleep issues. Nobody knows what's wrong so they don't want to make anything worse. While I agree with them there are times where I am so miserable that I'm willing to take about any risks/side effects, but maybe that's the symptoms speaking. So, that's it for now. I'll update later about the kids with pics since I have managed to steal Emma's blog.

Saturday, December 09, 2006

I've been Tagged!

My Friend Susan tagged me so here it goes.

1. Egg Nog or Hot Chocolate?

Both, but I can only drink a little egg nog at a time. Must be store bought, no home-made. I love hot chocolate but it has to have TONS of ooey gooey marshmallows on top!

2. Does Santa wrap presents or just set them under the tree?

This one is hard. Growing up my mom put most of our gifts from "Santa" and left our stockings filled on the couch. I don't ever really remember "believing" in Santa but perhaps I did. When I had my first child I decided that I would not really do the whole Santa thing. We would enjoy the fun of Santa and the reindeer and the Christmas songs but we would celebrate the birth Of Jesus Christ and all that comes with that.
Then I met my husband and we shared our first Christmas together. By this time I was pregnant with my second child, our first. He was adament about there being a Santa Claus an didn't want our kids to miss out on it. Throw in that Grandpa Nick, my father in law is an avid Santa fan and I was outnumbered. We agreed that there could be Santa. I would not tell our kids that there is no Santa but I would not encourage it either. I will teach them about Jesus' birthday and we will celebrate that as well.
Mommy and Daddy bought the kids about 2 gifts each, and the grandparents are ddoing the same. My father in law went CRAZY in KB Toys and "Santa" will be bringing the kids alot of toys Christmas morning. We're undecided how to handle it in the future. I don't really want to be "out done" by Santa every year, and would rather keep Christmas more about family and a few gifts here and there. In other words I don't want my living room looking like Santa's workshop exploded in it!

3. Colored lights on tree/house or white?

White. I think they're so elegant and they don't clash with the ornaments. On the outside I'm really good with either but more inclined to do a variety of colored lights.

4. Do you hang mistletoe?

No, but I really should!

5. When do you put your decorations up?

The weekend following Thanksgiving weekend.

6. What is your favorite holiday dish (excluding dessert)?

Mashed potatos and gravy. Mmm.

7. Favorite Holiday memory as a child.

I don't recall a whole lot, which is strange. But I do remember wanting a doll stroller REALLY badly. I saw it in my mom's closet and she convinced me it was for my cousin. I was heartbroken. She wrapped it up in a huge freezer box with TONS of newspaper and I was SO thrilled and surprised to get it Christmas morning!

8. When and how did you learn the truth about Santa?

I don't ever really remember believing. I do remember watching my mom stuff our stockings and put them on the cuch.

9. Do you open a gift on Christmas Eve?

Yes, we go to my husband's families house and have their big to do. We don't open family gifts until Christmas morning except the kids get christmas Jammies.

10. How do you decorate your Christmas Tree?

We have a fke tree this year. Wahh. But we love noble firs. WIt is pre-lit with white lights, star on the top, plastic bulbs this yea and each year we all get one new ornament which represents something we enjoyed or were into that year. Those are the hallmark ornaments usually.

11. Snow! Love it or Dread it?

Love it! Wouldn't want to live in it ALL the time though.

12. Can you ice skate?

Yes, it's fun too!

13. Do you remember your favorite gift?

As a kid probably an easy bake oven. I LOVED that thing, along with my, My sister doll. Until Chucky themovie came out!

14. What's the most important thing about the Holidays for you?

Reminiscing with family and celebrating the blessings from the year before. Or in this years case, celebrating that we made it through the year. :)

15. What is your favorite Holiday Dessert?

Umm, don't really have one. Used to be my grandma's Pecan pie.

16. What is your favorite holiday tradition?

We're just starting out our family traditions so to speak, but I'd like to start a tradition of the kids getting new coordinating Jammies or Jammies of their favorite character each Christmas Eve. My husband getting a new pair of funny/christmas boxers in his every year. And watching the polar express the night before Christmas Eve with the kids all snuggled together.

17. What tops your tree?

An ugly, cracked in the back lighted star that isn't lit this year. I'm having a hard time finding a new one that I like!

18. Which do you prefer giving or receiving?

Both, I love watching the joy people get from receiving gifts. I also enjoy hand picking something special for them. But I'd be lying if I said I didn't like tearing open into wrapping paper either!

19. What is your favorite Christmas Song?

Breath of Heaven by Amy Grant. I was in a Christmas play with this song when I was about 8 and have been in love with it ever since.

20. Candy Canes! Yuck or Yum?

I like them, not love them.

Tag you're it! (Copy, paste and share on your blog) Leave me a comment with a link to your blog so I can check out your answers too!

Friday, December 08, 2006

Double Edged Sword

Well, well, well. After several messages to the Head and Neck Surgeon I got a call back. My CT scan was indeed clear. There was slight bit of mucous in the frontal sinuses but it was considered a normal amount. The Dr. was quite baffled. He said to me he had to keep going back and forth between the scans and even double checked to make sure the CT scan was mine. He said he has never seen this before. He said it appeared calcified at the bottom and that it was completely "plugged" upon his physical examination. Remember back to the uncomfortable probe up the nose and down the throat? Yep, that is the one. He said he has been trying to wrap his mind around it all day before calling me back and letting me know that the surgery has been cancelled. I burst in to tears. Some shed of relief that I won't have to undergo a risky surgery, others from frustration, pain, and fear. The fear of the unknown. He is having me come in to have my hearing tested and to check my ears again but doubts that he will find anything. He apologized. What for? It's not his fault. He said he wishes me well and will be discharging me from his care once I have the hearing test and the ear exam.

He did say that my symptoms baffle him with everything showing up "clear". He feels it is a neurology issue or possibly a cardiac issue regarding circulation. My referral is in for neurology. I should get an appointment date on Monday. I'll be making an appointment with my general practitioner to get a referral for the cardiologist. In the meantime, I wait sicker than I was before I ever met him and left right where I started from.

The many prayers have been appreciated and continued prayers will be welcomed.

Tired of this roller coaster

I am tired of this roller coaster. I just want off of it. It's 3:46 a.m. and I woke from a haunting dream around 2:30 a.m. I tried to go back to sleep but drifted back into sleep in the same place I left off each and every time so I quit trying. So here I sit. Sean is snoring peacefully beside me. In the background there is the click of Emma's swing (where she sleeps peacefully through the night now, yay!) and the whoosh of her pump. The soft buzzing of the DVR is providing some much needed white noise. It should be peaceful but it's not. My head is pounding, my body aches, and speckled blackness like a TV show with bad reception succumbs me every now and then. I feel like my body is failing me.

Over the past two weeks my symptoms have significantly worsened. My equilibrium is completely off. I have fallen more times than I can count on both hands. I no longer shower standing up (Thank God for the removable shower head). I often find myself dizzy and catching myself. I no longer bend over for a fear that I will topple over. I don't drive at night because my vision has become more blurry and I'm pretty sure I won't be driving for quite some time. In fact, Sean is taking my van to work tomorrow. I get nauseous at any slight movement. And, finally, I find myself on the couch in a fetal position hiding the pain and tears more often than not.

Yesterday was to put it mildly horrible. I went into the office to help. Although, I wasn't much help. We went to grab a bite to eat. We stopped a few times walking in for me to "catch a few breaths" and wait for the wave of nausea to pass. The second we walked in I had to run to the restroom to "relieve" myself. I then ate most of my meal and continued to feel dizzy, nauseous. I guess I should have prefaced all of this with the fact that I am NOT pregnant, can NOT be pregnant, and probably will NOT be pregnant anytime soon or ever again. That's another entry in and of itself that I'll share when the time comes, if ever. Back to yesterday. We went back to Sean's office where I spent the next half hour on the nurse advice hotline since my general practitioner was out for the day. Like always they gave me the standard head to the E.R. after playing 20 questions with me. Sean's grandma was with the girls and Caden was at school still. Sean dropped me off at the E.R. and headed to pick up Caden and relieve Grandma.

I checked into the E.R. and of course it had to be one of the busiest nights they've had all month. Go figure. They had me up and down about four times just to take information, get vitals, and put a wristband on me. Oh yeah, to make me sign my life away and say I'll pay the bill. What's another bill at this point, right? So, I'm surrounded by a kid with a cut on his finger (looked like a paper cut), a woman in front of me who is obviously developmentally disabled (which of course, I have nothing against but please don't talk to me when I feel like puking all over you and I feel like I'm in the twilight zone.) a few people with what seemed to be the flu and Ms. Proper and her entourage (5 kids I assume) who come RUSHING in from the medical offices because she has an obstructed bowel. At which point the nurse explained that she had to wait like everyone else and that this is the emergency room. First come first service and emergencies take precedence. I thought I would faint right then and there and that they'd have to call security on who I assumed to be her son. I felt like yelling, "Somebody, call a doc Ms. Proper can't take a dump and while you're at it give her some hot tea and a warm water bottle to put on her tummy to shut her up while we all play the hurry up and wait game." I restrained myself, and instead remained slumped over in my chair next to the DD woman who wanted to tell me about her tennis shoe slippers that she got at Kmart for $10.

I tried to call Sean to see if he can come wait with me only to find out my phone is completely dead. In the 3 years I've had it I have never let it go completely dead. Cool, no way to call him. No way for him to call me. After, oh, I don't know how long since I can't tell the time I get called back. They have me stand behind a line and are doing an eye test on me. I tell them I'm dizzy and I really can't stand up. So, of course they say, "try". I tried, apparently "failed" part of their exam, have to grasp the wall, lean again it to prevent myself from falling. I start to cry since my body is going numb and I feel like I'm about to pass out. The nurse stands there and looks at me like I'm just taking a break for the hell of it. The Dr. who was sitting behind me rolls over on his chair and asks if I'm ok. I know if I speak I fall. He says, "nurse, can you get her a chair?” Then he realizes he should just stand up and give it to me. Sure enough, I started hyperventilating, sometime after the fact that I felt like I would pass out and nobody was helping me to move or sit and I got scared. Go figure.

I go to the room. Wait awhile on the gurney using the gown as a pillow. The doctor comes in and I immediately recognize him as the less than pleasant individual who "treated" me when I had complications during Lily's pregnancy. Not to worry he came in said so you're dizzy? I said yes and he said be right back. Nurse walks in and I ask the nurse for a new doctor. She says the ER is full and I'll have to go back into the waiting room to be reassigned. I say "No, thanks." and decide to deal with the doctor I will kindly rename Mr. Whack. So, Mr. Whack comes back in, asks a series of questions. Asked me if the room is spinning about 8-10 times. Each time I tell him no. He says, "Are you sure?" Nope, I'm not sure, you got me. I forgot it was spinning. "No doc, still not spinning." "What meds are you taking?" "I'm taking x,y,z, oh and I forgot the rest of the pharmacy as well." He says, let me go look at your records. Twenty minutes or so later he comes back in. "Well, I see you had a CT scan done and you have surgery scheduled." Yep, I told him that about an hour ago too! He says, "And the room isn't spinning? Can you see how many fingers I'm holding up"? At this point I was annoyed, especially with him and decided I might as well have some fun. He holds up two fingers. My vision is blurry but I can still make it out. "You're holding up two, it's kind of blurry but it looks like you might be growing one on the posterior side of your hand." He looked down at his hand puzzled and walks out of the room. I chuckle to myself. He comes back in, ordered another CT scan for me to make sure nothing else is happening up there. I ask to call Sean.
Called Sean, Grandma hasn't left the house, He's putting the girl's down to come be with me. CT scan guy comes and puts me in a wheelchair, he's pretty nice, and we’ve met before. The machine was decorated in garland to make it a bit more festive. We do the scan, I look at it, everything looks about the same, but hey what do I know. The guys looks at it and tells me my sinuses look like they still have some shadowing in them (read=sinus crap). I go back to my room and Sean joined me about 20 minutes later. Mr. Whack walks back in and looks surprised to see Sean there. He stands in the doorway and commences to tell me that my CT Scan was normal, that my sinuses are completely clear and to call my doctor and cancel my surgery and that it's probably just been a bad virus all along which is in my middle ear causing my problems. So, Sean asks, "Could they be lasting over a month?" Mr. Whack says "Well, um, I think so." Yep, real reassuring there doc. He "prescribes" something comparable to Dramamine, over the counter. Tell me to follow up with my head and neck surgeon and puts in another referral for a neurologist for my "issues".

$100 later we leave with really no more information than going in. I still have all the above listed symptoms; we're more confused on my "sinus issues". Obviously, thrilled if I no longer need surgery, however, now perplexed as to what the heck is really going on with me. Sean walks with his arm around me to the car so I don't fall. We drive with my head out the window like a doggy to avoid me puking in the car. Go through a drive through. Make it home and I immediately start freaking to get out of the van as not to christen it with any bodily fluids. I then flush out my system a bit into a paper bag I'm holding, walk 50 more feet and fertilize the bark covering in the planter a bit. Feel a bit better, head home, eat dinner and crash in bed to have haunting dreams.

I will spend the bulk of the day today I'm sure on the phones calling my doctors, having my CT Scan read by somebody who I feel is a bit more qualified, praying for no surgery, hoping for answers, and resting in bed since Sean's Grandma is coming up and I'm not allowed out of bed today. If you've made it this far I both congratulate you and apologize to you.

Goodnight and Good morning.