Wednesday, January 19, 2011


I'm slowly but surely getting back to 'normal' whatever that means. However I woke up this morning with what seems to be a head cold and I'm pretty scared that it could turn into something worse. I am NOT going back to the hospital!

So, for progress, I can now:
  • go up and down the stairs, alternating feet like normal, without someone else's help
  • get into the tub and bathe by myself, getting out I still need help
  • take a shower alone
  • get up from the toilet without assistance (this is a biggie and makes me so happy)
  • walk without help or a walker or holding onto something
  • DRIVE (this is fantastic and on the way home from being discharged from the hospital I was so scared thinking of how I was ever going to drive again. I've come a long way in 2 weeks and I'm so grateful to God for his amazing healing hand).
  • Do my hair. Apparently I had a very bad ponytail while on life support, so now it's time to get back to looking cute, ha. Oh, ps, if you have any pics from the hospital (esp any of me on the ventilator) please email them to me. Thanks.
  • Hold Nola and put her over my shoulder to burp, although not for an extended period of time
  • Get up from pretty much any seat without help and without holding onto anything except my knees, YAY!!!
Nola is doing great! She slept entirely through the night on the 18th and has normally been only getting up once to be changed and eat and then going back to sleep. I am also sleeping better, so we're all a lot happier. She had her 2 month check up on the 18 with her new ped and she weighed 10lbs 15oz, was 23.5 inches long, and her head circumference was in the 5% at 37.5 cm around. Embry also had a check up and was 26 lbs, 33&3/4" tall, and her head circumference was 48 cm. Nola got 4 shots and a nasal drop thingy and she cried for a minute or so, then she took her bottle and all was well again. She did have some swelling at the injection sites later, but Tony gave her some tylenol and she was fine. Oddly, while we were there and I was filling out paperwork in the exam room, I overheard a nurse and the dr talking about how one of their patients was the step-son of Pam Golden (my amazing OB who basically saved my life on more than one occasion). So being the nosey person that I am, I piped up and said, 'oh Dr Pamela Golden? Is there any way I can get a hold of her?' and proceeded to explain what all went on and how she was the one who thought I might have a blood clot etc etc. They said I could write her a note and they'd try to get it passed along to her, so that's what I did. I really feel the need to thank her, it's not very often you find a dr like her and she needs to know how much it means to me that she actually cared.

Speaking of pcp's nurse called me on Tuesday and said that she meant to call me earlier but their computers were down and she didn't have my #, but that Dr. Morris wanted to schedule a post-hospital appt with me. Ha. I said, 'well, I actually won't be seeing him anymore' and she just said 'ok, I'll let him know.' She seemed somewhat surprised, but I think she kinda caught the drift of what all went down and having kids herself I'm sure she wouldn't want them to receive the same kind of care that I did in that situation. I just don't want anyone else to get treated the way I did, get the brush off, and then end up on life support, or even worse, die. It's just not right.

Good news is that my insurance rocks and the bill for having Nola and the bill for this whole stint in the hospital were less than HALF of what I expected them to be. Another miracle I'm sure because God knows we could use some and he's definitely providing for us. :) I just pray that medicare doesn't go down the tubes with the health care bill cuz dang, I'd be up a river without a paddle. Then again, life's too short to worry, so yay for having good health care right now. Booyah.

My friend Kristy came to visit from WI last week and it was FANTASTIC! We used to do EVERYTHING together, we were pretty much inseparable and it was nice to feel so comfortable around someone. She's 5 mos pregnant and it wasn't an easy road to get there, so I was super excited to see and feel her baby belly and suggest that she name her baby boy Rourke just because I like it. :) We did some major shopping at the JBF sale, Target, Container Store, etc and she went through my maternity clothes (since I definitely won't be using them again) and picked out a few items. Needless to say, her suitcase was a little full upon her departure, but at least she got it zipped! We watched movies, went to MOPS, went to book club (she even read about 70% of the book with just a few days notice), went to Phoenix (to visit with Jamie), and went to girl's night. I'm so glad I'm able to get out more now because being cooped up at home is sooo not my thing!

Speaking of not using maternity clothes...we had the consult with the urologist and I think we've decided not to bank Tony's sperm before hand. We figure if there's a 97% success rate for the vasectomy reversal, then if someday he falls into the 3% it doesn't work on, he's just not meant to have any more biological children. As far as us having more kids, we haven't ruled it out. I've always pictured myself as a mom of 3 girls and Tony wants more kids (a boy in particular, but just more than 2 in general), so we're still throwing around the idea of adoption. We've always felt called to adopt (Tony's mom was adopted and I've wanted to since before I was married), but with the recent health issues I'm not even sure if it's an option anymore, even as foster/adopt. Either way, it wouldn't become a 'real' thing for quite a while so I'll keep you updated as we investigate further. I love babies and I LOVE being pregnant, so I'm kinda hurt that I never will be again. It's very trivial, but it still kinda stings.

The formula feeding is going really well. Nola doesn't seem to be having any issues with it and besides one small episode of leakage, things on my end are holding up rather well. I'm not so worried about mastitis anymore and I feel fine in that area, so yay.

The dr said to watch for any hardening under the skin in the 2 areas where I had the pic lines (my groin and my right bicep). Well, I found a very small hard lump right at the incision site to my groin pic line, but of course it was over the weekend, so I'll be calling them tomorrow morning to ask them about it. The arm one seems to be healing up rather well, but I doubt the bruising will go away for a while since I'm on blood thinners, but whatev. Till then I'll just look like I've been beaten and am addicted to nicotine because of this lovely blood pressure patch, good times.

I pretty much stopped doing the breathing treatments and I haven't gotten the results of the latest chest x-ray back yet. I go in to see the main dr on Wed so I'll know then what it showed. The x-ray lab actually gave me a dvd of the images, but I can't for the life of me get it to run on my computer. :/ It actually made my heart jump when the x-ray technician told me I had to strip down and put on a hospital gown for the gown, no thank you, I've had enough of those to last me a lifetime. So of course, I took a picture.

Saturday, January 8, 2011


Well, I guess I should say something about Gabby Giffords. Being pretty involved in campus politics at the U of A, I was kinda 'in the know' about stuff. She always seemed like a nice person, never did meet her, but did a paper on how she was the youngest person elected to congress. Oh right, I remember, that was for the legislative internship I applied for in Phoenix. So basically I researched her since district 8 was our district. Obviously this whole thing is just tragic and shocking. I'm praying for her full recovery, God works miracles and he's been in the business of doing some great ones lately, I know he can work through Gabby too. About the shooter, who knows if he even went to the U of A, but I seriously pray he was not part of college republicans. Politically this is gonna have a lot of fallout and I'm sure those of us who are 'normal' (ie not extreme) will get lumped in. We need to remember to pray for those who become victims in this situation in other ways besides physically. May God be with all of them to comfort and guide.

Now then, moving on... guess what? I got my present for the next Mother's day, Valentine's day, Birthday, Christmas, Sweetest Day, recovery, being well again, welcome home, etc etc etc. And it is .... this camera. It is my DREAM video camera. I am so excited! Oh, our regular one (that I got in high school) totally conked out before Christmas. It'll only work when it's plugged in. We've been using the small digital camera to take short videos in the meantime. I hope I can figure out how to work it. Plus for Christmas I got an extended life battery and piggyback battery along with some chargers that coincide with this camera.


This is obviously of utmost importance to me and I thought it might be important to some of you as well:
Health care Bill Repeal
House of reps is supposed to vote on Wed.

Friday, January 7, 2011

Much Needed Update

Nola: we got her into the new ped's office earlier this week. Doro took both girls. They said she has excess mucus in the back of her nose/throat area and we can use saline and suction a couple times a day to get gunk out. It's normal. Didn't ask about the bump, but it doesn't seem to bother her so I'm going to say it's ok for now. We have an appt for both girls on jan 18 so we'll find out more then. And, Nola was 11 lbs.

Confusion: Got the meds figured out. Think the prednisone (steroid) taper is too fast. Have Rheum (lupus dr) appt on monday with the last guy I saw (who said come back when you're not pregnant). The main dr has been talking with this rheum about my situation already so she wants me to see him again even though the referral for the one I wanted to see actually came through. I'll talk to him about the taper on Monday.

The in home nurse came and the PT guy. Nurse will be back tues and PT is scheduled for 2 times a week for 8 weeks but can be changed based on progress. I have appts with the main dr for next week as well as a counselor through my insurance for me to just talk through things.

My back has been hurting. Some is the same as what I went into the hospital with and when I take a deep breath (which I can tell I have diminished lung capacity) I can feel some like zinging around the whole area of the main lung clot. I was told in the hospital that all the clots had dissipated, but I'm wondering if that's true or if there's residual damage in that area or something. I will as the main dr for a chest xray next week.

I fell this morning trying to leave for the dr. Basically my legs just gave out. Everything was fine, but I didn't realize that could happen. Oh and I've decided not to try the stairs again until the new railing is up. We have delegated the buying to our good friends and we're so thankful for the help.

Getting organized on having help here (or having the girls somewhere else) is going well but is a lot of work. I know people want to help it's just a matter of logistics. Issue I'm having is tues-fri 17-21. I want to give people as much notice as possible, but Doro won't know if she can do those days until Thurs (the 13th) and I don't want to suddenly cancel everyone.

I've decided to take this one step at a time (aren't I punny?). If I look at it as a whole, it's just too much. One thing at a time and it will get done. Oh and I got the checkbook figured out and all the mail gone through.

One thing I have to think about is my pcp and the first er dr who sent me home without xrays etc and if we should seek retribution regarding this whole thing. I love law in itself, but the idea of a lawsuit scares the crud out of me. Please pray for direction on this matter.

Ok that's all for now. Time for me to try and get some more shut eye.

Wednesday, January 5, 2011

Well, Here it Comes

I think I'm on the verge of a mental breakdown. What the heck is going on? I feel like the only thing I should think for the rest of my life is 'look at me, I'm alive! Here I am, I'm alive!' yet here I sit at 3:30 in the morning, not gotten a wink of sleep, worrying. When getting discharged today I was barraged with about 40 papers listing medications, notes for other dr's to fill them in, instructions, but like half of what I need is missing. I feel like I was given way too much information at one time to process yet not all the pieces are there. We filled the prescription which was about 10 diff things, yet none of them were a blood thinner. The orders said not to fill the one blood thinner and in my mind, I was on more than one, so where are the rest? I called the insurance company, luckily got through to the dr after hours and she got a blood thinner filled. I was given a huge batch of meds this morning, I don't know which ones, yet I'm still supposed to take all these meds tonight before bed? Aren't I duplicating meds, especially the steroids which are very sensitive to dosage. How come nobody went over all this with me? Then I lay here wondering, how is my body going to process these 15 pills I just took? All at the same time? Shouldn't they be spread out? What if I actually do go to sleep, will I wake up? The last thing I want is to go back to the hospital, but shouldn't someone be monitoring this more closely? I went from getting my vitals checked 6 times a day to getting them checked, oh right, not at all. Then on top of it all, they restarted some of my old meds and none of those were in the prescriptions am I supposed to take those or not?

Every single muscle in my body aches. I feel like I ran a 10k. I can't even move my arm to pet the cat without pain. Still, I have to use what seems like all of my body strength in order to get up to go to the bathroom. Everything is sore. EVERYTHING.

Nola has a bump on the back of her head, like a squishy nodule. She also is constantly snorting and like gasping for breath. Something is not right. I called a new ped and set up and appt for her and embry to be seen but the earliest date was the 18. Should I call and see if they can see her sooner? Do I go along even though it's going to be incredibly difficult? But I need that information. I need to know what's going on with my baby.

I have no clue, absolutely none, as to what is going on with Tony. I feel like such a burden. We need to go to counseling. On top of this, I had a talk with the dr before leaving in which she said basically there is no way I should ever be pregnant again. I guess I knew this. I however can't take any hormones or get any surgeries which means that it will be up to Tony. He's only 25. This seems too young to do something so drastic, so final. I mean, what happens to him if something were to happen to me and he'd want more kids down the road?

There are a million things to get done. Bills sitting there waiting to be opened, probably already past due. It's like a never ending list of dr's to see. I have no idea who I'm supposed to call and when and then when I'm supposed to see them and why.

This whole thing is hitting me all at once. Up until now, I kinda felt like it all happened to someone else. Now I realize that I'm the one hobbling around. I'm the one laying here watching the seconds tick by for 5 straight hours waiting to rest. I'm the one that is missing 2 weeks of their life. What happened? I want answers. I kind of know the medical side, but what about the emotional side? What did people think? Where were there minds and hearts? I know none of this. How is this going to work? How is anything going to get done? How will I make it down the stairs in the morning? Who's going to put all this junk away? Will I ever fully recover? The dr gave me a lecture about how the normal heart runs at about 65-70% and mine's about 45%. What does this mean? I thought, 'oh good, it'll be like a month and I'll be back in the swing of things.' Is that even remotely realistic?

I just don't know what to think. It's all so overwhelming. I am happy to be alive, but my gosh, what is going on?

Sunday, January 2, 2011

All the Praise goes to God

oh goodness, where do I even begin? I'm sure most of you already know most of this story from updates on facebook and through email, but I feel I need to document whatever I can, which actually isn't much more than hearsay.

Basically, I guess you could say, I almost died. From my last post, you know I was in the hospital with a blood clot and fluid in my lungs. Well, I actually only remember about 3 days of that (dec 16-18) and then waking up in the ICU getting a bone marrow biopsy with a breathing and feeding tube keeping me alive (which I believe was about dec 28).

I guess that everything hit the fan on dec 20. My parents came up to the hospital to see me and it's a good thing they arrived when they did. My mom walked in with a little christmas tree and apparently I was trying to find the nurse button, completely soaked, eyes rolling back in my head, turning blue, couldn't breath, so she threw the tree on the floor ran in the hall yelling for help and about 20 drs poured into the room and shoved them out and called a code blue. They intubated me, did a ct scan that showed a 'huge' blood clot that had traveled to my heart and was keeping it from actually pumping. The drs told my parents and tony that they could use a really dangerous drug to try and break up the clot which would probably cause other internal bleeding or basically my heart wouldn't be able to pump. Then apparently I stabilized enough to not need the drug. They moved me to ICU on life supports and found blood clots in my legs, pelvis, lungs, and heart...also pneumonia and fluid around my kidneys/liver. My bp was sky high (210's/120's) and my platelet count was extremely low (30's and spos to be in the 200's) even with multiple platelet transfusions.

Eventually I guess I started to stabilize enough for them to start lowering the sedation. This is when I started waking up. It took a few days of me being 'awake' to get the breathing/feeding tube out. Being awake with that in was extremely horrible and I couldn't talk to ask any questions of what happened, so I just kinda had to wonder what was going on. I kept gagging on the tube and blowin chunks because of it, it was really horrible. When I woke up, I had no idea where I was, or what happened, it was like 2 weeks of my life was just missing. I do remember a few things while under sedation, it's very surreal. One really good 'memory' was swirling around in a shopping cart at Target with my brother getting after Christmas sales and a very bad 'memory' was going to a group home hospital setting where I was in a wheelchair, doing a bell craft and then people started fighting outside and I couldn't reach the phone to call tony no matter how hard I tried. I was aware of there being the possibility of seeing a white light and I was determined that if I did see something of that sort that I was going the opposite direction. I somehow knew my time on earth wasn't up yet. These 2 'memories' seem so real I would swear they actually happened and they were the first 2 questions I asked tony once I got the feeding/breathing tube out.

Apparently a lot of people came by while I was in icu and I don't remember one bit of it and for that I am very sorry. I feel so horrible that I can't remember all of the love and prayers that poured over me during that time. I also feel extremely overwhelmed with all the help and just giving and caring that people have done for me, my family, my husband, and the girls while all this has been going down. I mean, there's no possible way I could ever express my thankfulness, it would literally be impossible.

As of today, the news is that God has restored me completely. The dr's said there was no way my heart could ever repair itself and it is 'back to normal'. My lungs are 'back to normal'. All clots are completely gone. All fluid in my lungs is completely gone. All of my blood counts are in normal range and my body is completely restored. The dr's are basically baffled. They're saying it was a lupus flare and really have no idea why any of it happened or how it has been completely fixed. God is so amazing, I can't ever begin to explain the amazement that fills my heart through this whole experience. I'm just in awe. I'm so thankful to be alive and vow to not waste one second ever, ever again. Life is just too precious.

The main thing now is doing rehab and getting strength back. My legs look pretty funny. Where there would normally be my pretty large calf muscle (I'm no spring chicken) there is a skinny, flimsy, jello like piece of flab. So, I'm now able to stand and walk with a walker, but still need some assistance actually standing up. Seems like this is going to take a lot of work and humility, but I sure am motivated to get home to my kids and resume living. Life is just too short to be hanging out in a hospital bed waiting around to move. Let's do this!