Hospital Update

Swollen Hand/Arm from IV Infiltration
It' s been nearly a week, and I'm still (not) enjoying all the amentities of the hospital. Vomit. I feel worse than when I came in last Wednesday, no big surprise.

We've brought in a GI Doc. I did a small bowel study on Saturday. Endured "GoLytely" on Sunday and (at 25) had a colonoscopy yesterday. The only thing we found, is that the barium from the bowel study is still there, we will have to repeat the colonoscopy in a few weeks.

I developed a fever Saturday evening, it's low grade. It's still hanging around and all of my labs look normal. An Infection Control Specialist is coming in to see me today.

And, since "constipation/bowel issues" have been ruled out for the root of my abdominal pain, we've called OB. He should be in after hours tonight. GI thinks we should do another laperoscopy (my last was in 2005) b/c he could get a look at what he wants to.

It's been a heck of a stay! I've had 2 IVs infiltrate. It took 4 nurses and 10 sticks to get a new one started on Sunday and today 2 sticks so far, I still don't have one in- they are paging an ER nurse (I told them we aren't doing 10 sticks today, I refuse!). We made a formal complaint about the level of care/response time provided by the nurses, it's been horrible. The Director spoke with me this morning, and it's been better since.

Oh Hospital, Oh Hospital...

How I love thee... I hear that playing in my head by Larry the Cucumber from Veggie Tales to the tune of Oh Christmas Tree (That was our favorite Christmas CD this past year, one that got way to much radio time! haha)

Really, I'm not loving the hospital. I am however, back in it. For once it wasn't the Heart doctor (or the ER) that did the admit. Mr Kidney Dr did it. I went in yesterday with abdominal pain and swelling in my abdomen, feet, and ankles. Landed myself a lovely room on the 4th floor here. Trying to maintain my sanity... ;)

We've done several tests, labs, etc. Still waiting on my CT results. We found a "weird" infection in my urine (that wasn't in my urine when I was at the hospital Tuesday for my every 2 week blood/urine labs) that is resistant to oral antibiotics. So, currently I am on IV fluids and IV antibiotics. I tried to barter with my doctor to let me go home today, but it didn't work. We shall see how the next few days go! Sometimes it feels like I need to take stock in the local hospital, or just purchase myself a permanent room :p

Just Sad Today...

I've been a horrible blogger! Perhaps I need a place to vent again. It just seems like the only news we're getting (or I am getting) is negative and I can't see sharing negativeness with the rest of you.

I will. I (and the family) need some more prayers.

My heart procedure was an 11 hour thing, I was awake for 8 of it. I thought childbirth was bad, then my boob job was the worst pain ever. I am telling you- that procedure was the most painful thing I have ever been through. After the 8th hour when it was "decision time" I just begged to be knocked out. I made it awake much longer than I thought I would. The team was amazing at keeping my mind occupied or rubbing a hand or foot. We got rid of the nerve going to the sinus node of the heart and they also ablated some areas near the atrial node inside the heart.

We were so hopeful it would work, but so far it's not done much more than keep my heart rate below 170. Which, is an improvement b/c it would get to 216. The last 2 weeks has probably been the worst. We've changed my heart meds about 5 times (the pharamacy loves me. haha!). My blood pressure dropped so low last weekend that I couldn't get out of bed w/o blacking out. It was scary. I go in for another holter monitor on Wednesday. I am praying we can find something that works.

Last June (2009) I had a CT scan for my circulation- my toes like to turn blue. Weird things! Something in my R femur showed up. So, we did an xray. The radiologist called and wanted an MRI immediately. It was scheduled and I didn't go b/c, honestly, I just didn't want to. I figured it was no biggie and we'd do it later- let's fix the heart first. So, when I went back in to see my internist she kinda fussed at me. In Nov I did the MRI and we found 3 lytic lesions (The orthopedic doc says they are holes) in the femur. If I had a copy of the MRI I would post it. I need to get it.

So, today I went to the Nephrologist (Kidney dr) b/c the ct from Nov (we did a CT and an MRI in Nov) showed a "milk of calcium" deposit and several kidney stones (this is my 2nd time to get several stones in each kidney this year).

Today is what has me sad. The kidney guy said that the kidneys could be pulling the Ca out of my bones and depositing into my kidneys, causing holes in my bones- the right femur is the only one we've MRI'd. It's called "Brown Tumors". We discussed things with the parathyroid gland as well. I googled it. Should not have.

My list of Dr's is growing to be as long as Logen's at this point. The Dr today agreed in saying "you have multiple systems failing you, some of it has to be related". I am so glad that somebody agreed with me on that. He actually said it before I asked about it.

I am just not sure how to handle all of this. I am trying to stay positive. Now, it's just kind of like "really?". I love it when the doc says "this is rare" (as the bone, heart, and now kidney guys all tell me). I have to laugh and say "thats what the ___ doc said to. I must be rare!" haha!

So, anyway... as this crazyness all unravels we just need some prayers. Thanks :) It's putting strain on us all. I will try to be a more faithful blogger!

Need To Vent!

I spent 3 hours at the doc for myself today. I am so used to doing this for Logen, that I am ok with it. I have accepted that. I have accepted that there's not always good news when we pack up and head to his doctor's appts. It's just how it is. However, when it comes to me- I've expected to go and leave without "bad" or "crumby" news. Today, I went into for my hospital stay follow up. We went through my labs, etc. I kid you not, that stack was forever thick. My labs were so messed up. Things were too high, and too low. So, the doc ordered all of those again today. The one I am most concerned with is the ANA-titer. Mine is too high. Everything else is too low. I guess I just sat there with that, could anything else possibly be wrong? There are several things this could mean. I'm not going there, we will just hope for the best. It has to do with your antibodies though. I got a referral to a Neurologist for migraines (that have been around since before the heart stuff), but I wonder if all of this stuff isn't related in some odd way. like all of Logen's weird stuff??? Doesn't it all have to add up somewhere?!?!
Anyway, that's my deal. I want to be fixed. I'm done with the bad. Oh, Saturday's call... yea, I'm just sick of talking about it. Not what I wanted to hear. A heart procedure is in my future. I will elaborate in the next week.
Our family is in the need of more prayers :) Thanks!

I honestly haven't kept up here b/c I feel so much going on is negative. And, sometimes you just want to share positive news. I was waiting for that to roll around.

So, I am anxiously awaiting a conference call from a heart specialist (Electrophysiologist) in Oklahoma City. She is calling today to speak with my family about what looks like our 1 option for me. She (the doc herself) called me on Wednesday and told me that the only option she saw was experimental and risky. Her words, not mine. She said she put me in "tentatively" for heart surgery on Oct 6 (just happens to be 3 days after my 25th birthday). She requested todays call to be a family thing, where atleast one other person be listening and participating in the conversation. I chose my Mom b/c she is an RN and worked 10+ years at the Heart Hospital. The doc also told us to record the call so we could refer to it again while making the decision.

To be quite honest, I am scared out of my mind. Not only do I feel like I have been run over on most days I also have some weird, eerie feeling of death. My mom sat down and sumed up my tests and things for a family member in a recent email. I thought I would post that for those interested. Please continue to keep Logen & I, as well as our family in your prayers.

* We have not heard anything on Logen's test results. I will post them as soon as I know something! *

EMAIL:
"As you know Jess has been hospitalized 3 times since Nov 08 for "a racing heart" called SVT, Hypotensive crisis (low bl pressure) The cardiac catheterization showed no blockages in the arteries: a right & left were done. The right side checks for pressures inside the heart as well as the amount of oxygen. The heart itself is in good shape as far as healthy strong muscle. The electical conduction appears to be the issue although they could not see the right ventricle.

So far she has gone through:
ECG-sensors that detect electrical activity of the heart that measures timing & duration of each electrical phase in your heartbeat (this is only as good as the minute it is being done)

Holter monitor-worn for 48 hrs to record activity during a routine day, on more than one occasion.

Echocardiogram-uses sound waves to produce images of heart size, structure & motion.

CT & MRI-collects images of the heart & chest. Stress Test-failed this test within the first 5 min, so was unable to complete r/t heart rate above 200 while on the treadmill.

Electrophysiologic testing & mapping-catheters tipped with electrodes threaded through blood vessels to a variety of spots w/in the heart. The electrodes map the spread of electrical impulses through the heart. They stimulate the heart to beat at rates that trigger an arrhythmia hoping to find what may be causing the problem.

Pulmonary Function Test (PFT)-meaures how well the lungs are working, expanding & contracting & of exchanging oxygen & carbon dioxide efficiently between the air (or other gases) within the lungs & the blood. It records changes in lung size as air is inhaled & exhaled & the time it takes for the patient to complete the task.

So, as you can see she has endured a lot in the past 10 months, with very little explanation as to why she is short of breath after walking a short distance, poor circulation (blue toe syndrome) & a heart rate that cause fatigue/weakness with minimal tasks, dizziness & several faiting spells.

The cardio & pulmonologists are puzzled with what appears to be a healthy 24 yo who goes to school full time & is raising 2 small children. She is an over acheiver & it is extremely difficult to hold her back from doing all she does in a day."

NEW doctor, NEW plan!

Ok, so... I'm on night 4 in the hospital and i've lost my sense of humor. I'll give a run-down of whats up.

I passed out walking down the hall Sunday. I was home alone with both boys, Adam had run to the store. When he walked back in, him pushing on the door must've brought me "too". The boys were laying on top of me. He put me on the bed and got me dressed and on we went to the ER.

I went straight back b/c of my heart stuff. They checked cardiac enzymes, etc. I had had a migraine all day I couldn't kick. They decided to do a head CT. They started an IV and gave me morphine for chest/head pain. 5 hours later they said it was to risky to let me leave, they admitted me.

Monday, they watched me, did EKGs, and ran labs. Tuesday we did an echo, EKG's, a pulmonary function test and more labs. Today we've done EKG's, labs and called in a new doc!

My EP actually said yesterday that he thought I passed out b/c I have a UTI. Seriously, we were all ticked. We called in a new Cardio today who I really liked. First thing tomorrow I will get up and do a stress scho. My heart got up to 150 today (and I am sedentary in here, let me tell you). So, he wants to see what it does with activity. He said he is going to be in there to watch me. My BP is staying low (too low actually) at 95/59. I'm already on the highest doses they make of 2 heart meds, so we are kinda at the end of the rope with medication therapy.
Our new plan is extensive and several tests may be repeated. I have been under so much radiation this year, I think my insides are fried. I've had my blood taken so many times, I honestly cannot even feel them stick me.

Please say a prayer for our family. The boys are really having a hard time with this. Parker slept on the couch last night b/c he couldn't sleep, not even in Mom's bed! Last night when he left the hospital he held my hand and said "go with me, mommy". Talk about breaking my heart. Mr Logen adapts to change like no other. He is very happy to see me when he comes to visit and has the biggest smile ever. It's the bestest!

Atlanta Appt (Dr Shoffner) Scheduled!

Oh boy! We've been so stinkin' busy. I have this week and next week left of 3 classes a day, then 5 weeks of just 2 classes. That will feel like a breeze after this craziness! :p

Sooo... His appt with Dr Shoffner (the Neurogenetics specialist) has been scheduled for July 1 and 2. The only hold up at this point is they can't confirm until about Friday. Which will leave me about 3 days to book flights, rental car, and a hotel AND get to Atlanta! Kinda, just a little bit, Stressful!

Where the funding for said things will come from it beyond me. We've been slowly gathering stuff, but I haven't had a break in school long enough to pull a fundraiser together.

The Doc has reviewed just half of his records and defininately wants to see Logen. Here is what we will be looking at (the list could change):
Diagnostic Testing for Mitochondrial Disease
* Blood for mtDNA (PCR and Southern)
* Blood and CSF for Lactate and Pyruvate, or Brain MR Spectroscopy (we are doing the spinal tap at this point)
* Urine Organic Acids (by GC/MS)
* Plasma and Urine Amino Acids Blood and Urine Carnitine
* Brain MRI (He's had 2. 1 was abnormal, 1 was normal. You're guess is as good as ours on this)
* Muscle Biopsy (they will be removing a 1 by 1 piece from the top of his leg) and Skin Biopsy, Neuropathology and Electron Microscopy, Mitochondrial Electron Transport Studies, Fresh (coupled) mitochondrial Polarography
* Resting Metabolic Rate Study

{We've been told by the Neuro that all of my cardiovascular issues can be something related to Logen. It can just now be showing up as "adult onset" in me. If Logen does test positive, I belive I would be tested as well as Parker and possibly Adam- the reason Adam may not be has to do with the way the mitochondria are passed on. I'm not sure what would be a good thing here. We just want answers for everything thats happening, medically, that no doctor has been able to explain!}

Another hang up is travel on the 4th. I'm a little afraid to fly on that holiday. Call me crazy! ;-) I'm excited about this and want to get the testing done ASAP bc the results will take around 3 months to come back. Rrrrr! I hope it all works out and we can get it done next week. I am going to contact Angel Flights and see what they can do as well. Tickets from here to there are around 900 bucks a person! Driving time is about 13 hours if we just drove without stops or traffic. I hear other parents laughing out there! Like that would ever happen, 'eh?!

Prayers Tomorrow, Please!

I suppose this one is to be more of a vent. Or a prayer request. I'm just not sure.

We changed my heart meds last week b/c one of the medications. I'm on med 3 and nothing has brought my levels under 100 for an extended period of time or gotten rid of all the lovely things (like allowing me to walk without becoming winded!) like it should. My feet and hands have started tingling and feeling numb. My toes also started turning a lovely shade or purply-blue. The blue thing has happened on several other occasions and when I asked another doc about it, she'd said it was fine. FINE??! Blue toes aren't fine....

So, when I called my EP the nurse said, "come on in now". I went in, the doc looked at my toes- saw that they are blue and ordered an ABI to be done then. The 'people' came in and did my ABI (which hurt in one leg... as she warned. You wouldn't think just taking a pressure would be painful). I'm cutting out details here as I have a homework assignment due in a few hours. I was sent to check out and be on my way- they were going to call with the results.

I kinda freaked when the nurse caught up with me and said "I'm glad I caught you, we are trying to get your insurance to pre-auth a MRI and MRA now, can you just sit in the waiting room?" Um... ok. Flip out. So, I sat there and text my mom and was to the point on little water droplets in my eyes. The nurse came back out and just had me come back there b/c one of the nurses had the insurance on the phone and one had central scheduling on the line. My ABI ended up being .94 and 1.00. I was told that anything below 1 is abnormal. Anything below .95 is "significant narrowing of one or more veins in one or both legs." My Doc spoke with another Doc while I was there, we didn't get the test scheduled for that day b/c it's a 3 to 4 hour deal. And, the machine wasn't open. So, I go in at 2pm tomorrow.

Conclusion: the blood is not circulating to (and through) my legs/feet like it should be. We are going to figure out why. So, Dr B says. This can be related to my heart thing or not. We don't know.

I do NOT fit in the "approriate categories for any of this stuff. I am young, never smoked, I don't do drugs, or drink (well... not like they are talking!), my BMI is perfect... it just doesn't add up. And, my Doc says that. "This happens to 80 year olds, not people like you". Yes... he said that!

Anyway... I get to be in a tiny space for a while tomorrow and I'm just a little concerned about everything going on. So, please keep our family in your prayers. I had a test today and yesterday. And, still working on all of Logen's stuff. And, it's just really overwhelming!!!!

Back In School We All Go

If you didn't already know- I'm in summer school. I'm trying to "bust out" 9 credit hours in 5 weeks. I have 4 weeks left. I wake up around 4:30 am and leave my house by 6:15. I'm done with class around 2 pm each day. I get to see my kids by 3:30ish. And by about 4 pm, I'm about exhausted and can't think straight. Please don't attempt to get me to remember anything important between the hours of 4 pm and bedtime b/c I don't remember it.

Logen is also in "Extended year session" aka summer school until July 2.
Parker has returned to a new daycare (he was 'removed' from the other... can't remember if I blogged this?!) and is doing well. They put him in with the older kiddos and his speech is improving. He's minding his manners nicely! Now, when he comes home.... oh, thats a different story. But, the poor little guy has to get up so early- so we cut the boys some slack there.

I am taking Exercise Physiology, Seminar of Exercise Science, and Motor Development. I had my first test at 7:30 this morning. I have another test tomorrow in another course.

I'm Home!

I was discharged Thursday afternoon. Things look ok, I go back in 1 week for labs- my potassium was still low on days 2 & 3 of labs (and they'd give me a supplement everyday). So, I left for meds to take for heart health 4x a day. I'm 24! My d/c nurse said it nicely and I have to agree- nobody my age should have to take this many medications for her heart. A little self pity, I guess.

I'm home, picking right back up and going about our business. I haven't felt really good. The meds totally wear me out. And, I've been seeing doubles! (its the meds!) They said it would take a while for me to adjust to them. Oh, boy! haha The boys are happy Momma is home, but they are having some Nana withdrawls!!!!

I'm working on getting my private blog back up.... send me an email if you're interested, I will need your addy to add you.

Hospital Update

Not sure whats up with the ad in the middle of my blog?!

Thanks to one of my great friends, my stay hasn't been to bad! Julie has kept me fairly entertained.

Yesterday was a bit rocky. The new beta blocker knocked me out. I couldn't keep my eyes open. My blood pressure dropped very low last night and was still really low this morning. I got up and moved around, which brought my heart rate up to 113 and my pressure up to high (I also got dizzy and felt like I was going to float away... I'd rather have been on a cruise). My APN came in and said that's all part of inappropriate sinus tachycardia. The Doc came in about 2 hours ago and said on the monitor things are looking good- even with the fluctuations- the meds are doing what we need them to do.

I did get in "trouble" for just sitting a reading. I was told to get up and walk around the unit. I told him I never get to just sit :P As boring as this all is, it's kind of nice to not have to wash laundry or dishes! I miss my kids like crazy and am ready to go back to it all though.

I did not sleep last night. I finally went to sleep around 1am and at 4:30 I was woken up for an EKG and labs. A lady rubbing your arm with alcohol to wake you up doesn't make you happy, let me tell you! At 5:30 (I had just gone back to sleep) they came in to do vitals.... And, at 6:30 my step dad brought me IHOP.

Fairly uneventful here. My kids have been by to visit, but aren't able to stay long b/c they dont do confined spaces for long periods of time.

I Fell!

Today after we went lawn mower shopping we went for lunch. Parker has gotten very good at running away from us... ideas would be helpful!

He was running towards a very busy street, so I ran after him. I was coming down a wheelchair ramp and crashed. I honestly cannot say what happened. I think I blacked out?! When I landed, I couldn't move my right knee and had pain up to my hip and my toes were numb. I lost the nail polish on both "big toes" and managed to bloody my R toe, L foot, L knee, and R palm. We got home and I iced my knee, cleaned my "boo-boos", and napped once my pain meds kicked in. My knee still hurts and I'm walking around with the help of a cane :) I'm feeling about 80 tonight!!!

Ya know, when stuff keeps happening- ya just gotta laugh. I can't believe I tumbled down the wheelchair ramp and hurt myself! The waiter from the restaurant even came out to check on me! Lordy Lordy :)

Zombie Hangin' In Space

It's about 12:30 Thursday- a little over 12 hours since my 1st dose of my new med. I feel really awful! Like a living, walking zombie. I'm so exhausted. I feel like I haven't slept in days. And, I have a just "hanging out in space" attitude. The doc said this is to be expected until my body adjusts. I can't wait. This stinks.

Heart Stuff

I started out my day by going to see the Electrophysiologist. Somebody had finally figured out what is going on with my heart!

I started a new medication for heart failure today, a cardiac glycoside. He started me on the highest dose. My Pharmacist warned me of nausea. He also said if I start to see "Halos" or lights around things (or any other vision change), my dose may be to high and I may need to go up a little slower. Doc also said to drink plenty of electrolytes! Blood tests can show if you have the appropriate levels in your system. I thought that was pretty cool.

He will be admitting me to the hospital for 3 days to start a new beta-blocker (BB) b/c the current BB is not working as it should. My heart rate is still averaging 120, but my blood pressure is around 100/60 (normal is 120/80). So, while my heart rate isn't going down, my blood pressure is. There are too many risks involved with starting the new med, so he won't let me start it at home. It must be done while monitored 24/7. I am waiting to hear back from the nurse on when.

This is a life long condition and surgery isn't an option (at this point, but who knows- maybe somebody will invent it!)- just symptomatic treatment with medications. It will be a combination of a few meds to treat.

Obviously, the biggest risk associated with this is heart failure. But, my doctor seemed confident that with the proper medications we should beable to avoid this. :)

The med I started today may make me tired as it slows things in my body down. My poor heart is so used to going so fast it's not going to know what to do when it gets to rest!

I'm trying REALLY hard not to let this get me down. Please say a prayer for me (and my family) on this. It's a scary thing, but I'm keeping my faith. I think I am going to start "private blogging" again (there's marital probs, Logen's stuff, this, etc!). If any of you are interested in reading, let me know.

Idiot Geneticist

Here's the re-cap from our April 10 appt.

This guy is an idiot. I will be writing to whoever I need to about this ding bat.
We walked in pretending we knew nothing more than at our last appt with "Idiot" (my nickname for him) in January. We asked him what his next step would be in finding a Dx for Logen. He said a blood test for Mitochondrial "stuff". We said ok, explain. He blah, blah, blahed. We half listened- already hearing the cons and pros of the biopsy and blood testing from Dr B in St Louis. And, as you all know by now- we trust StL with everything b/c they haven't screwed up.

So, interesting part happens. He says this is the LAST step for Logen. IF this blood work comes back normal, then we are done. There is no more testing. This is it, end of the road.

I sat up and said, "Well Dr Idiot- Have you heard of Dr Shoffner?"
Dr Idiot: Hmmm. Yes. (puzzled look. crap! How do you know about him?!)
Me: Would you consider sending Logen to him for a muscle biopsy?
Dr Idiot: Well, I don't really think that would be necessary if the blood work is normal
Me: From what I have been told and researched myself, the blood tests can be wrong. I think it would be best to get accurate results so we can begin treatment, if possible.
Dr Idiot: (Another oh crap look! This mom may actually know what she's talking about. And, he just sits there like a big dufus.)

I'm not kidding- he wraps it up by TELLING me we will draw the labs and he will see us soon. I'm like, uh- WHAT?! I went ahead with the labs, b/c IF they show something- then, ok- we may have an answer sooner (7-8 weeks). But, I really DOUBT we drive 4 hours to see this guy again. Horrible. And, how can you tell a family that this is the end of the road for them? It's obviously NOT. Had we not had the knowledge we do and not been to StL, then we wouldn't have known about Shoffner. There are other familes out there trusting this man. And, I feel he's incompetant. He was arrogant. He walked in saying he was the best there is. And, he is clearly NOT. He told us this the last time we saw him as well. I should have taken Logen and ran quickly then, but I gave him a 2nd chance.

So, there's part one of drama from those appts. Crap! Total Crap. I'm going to bed now. I'll be back soon!

PS: the short 1-2 line posts are via text. Thats why they are short. :)

Hmmm....

I realized in the past week that maybe 13 hours (with Calculus and Microbiology!), Motherhood, a biting toddler, and a SN Kindergartner don't mesh together quite like my little mind mapped out. Of course- who could picture their 2 y/o biting?!?! haha

Today, we got our Micro tests back. The average was a 68! Doesn't that tell the teacher something???? I was relieved to get a 71. Pathetic, I know. I have NEVER gotten a C! I should be in tears! I'm actually happy about it. When he told us the lowest grade was a 35 I was flipping out thinking, "It's mine!". He even had a 19 in one of his other classes. Again, does that not tell the guy something?!?! I won't make it a habit, I promise! Totally going to screw up my GPA. Maybe I can pull things together. We can drop 1 exam. Maybe this will be my lowest, I cannot help but think it won't be.

I read the Twilight series (4 books) in less than 2 weeks. Maybe I should have put that off until Spring Break.... I recommend you submerse yourself in those books too. I passed them off to 2 other people, 1 'hates' me for it. She's adicted now. I think it's great b/c now she knows how I felt. :P

UGH!

Logen had a seizure at school this morning. :( He went to the nurses office for a bit to re-gain color and 'perkiness'.

I look like I've been hit by about 10 Mac trucks, worse- I feel like I've been run over by about 35 of them. You know it's bad when a dear friend says you look rough. It has been the week from hell. Pardon my language.

Logen has a Dr's appt this afternoon, will update soon.

Happy Note: He made a 6-hit sequence on his "talker" w/ Ms Gail yesterday!!!!!!! More than once... he did it before he put in every single puzzle piece. Not b/c she asked him to, but b/c Logen wanted to! I was so stinkin' excited!

Logen- No Food?!

I'm not sure what's going on with Logen now. I don't know if this is a side effect of the Keppra of what. He's not eaten breakfast OR lunch since he's been home for the break. His teacher says he eats at school. I'm skeptical now. What they say is eating may not be eating to me. So, I'm calling the Neuro first thing in the morning to ask. Our last appt she brought up his weight gain- and some concerns. He's been in the same size since before Parker got here!!! Jan 2006 I remember buying some pants he can still wear. We increased the does to 2x/day on Thanksgiving- and we've seen no seizure activity since! (YAY Logen!) We shall see on the eating. Say a prayer for the little guy. And his Momma. I've been having some nasty chest pain the last few days. :(

Logen is now up to 6 medications a day. He's 5!!!!! This is insane!

Updates On Us All

Things have been rough for the last few days! My hospital stay was less than desirable. I've never had my blood drawn that many times. I woke up at 4am Saturday to the lab tech rubbing my arm with alcohol. I gave up after that. And, if a respiratory therapist comes in to do an ABG (arterial blood gas) or 2 or 3 RUN! Those suckers hurt, left my arm in pain for a while (so much so I couldn't text or hold up my book)

So far- we know nothing more than we did going into the hospital. And, I'm home. I went in today for the echo stress test. With the holidays we aren't sure when the results will be given. They did start me on a heart med today just to see if we could control the fluctuations. My HR climbed to 197 today during the test. The lady seemed a bit surprised a otherwise healthy 24 y/o could manage a HR that high. Congrats to me... haha

I went to Wal-Mart with Adam and it was terrible. I couldn't see 10 feet in front of me. The store began tunneling in on me, things got blurry, and I felt 'floaty'. It's a horrible feeling to have. I can't exercise, I can't go to the store- so we have to get this figured out soon. 'Cause I've got things that I've gotta do!

So, that's what we know. Nothing. I know it's not just 'nothing' when my actual Doc (and not the nurse) calls to check on me and says she didn't sleep last night b/c she was concerned though.

Mr Logen is doing well on the Keppra. We've not seen a seizure since we started it!!! YAY! Still planning on the videoed EEG in December. He's enjoying his break and staying home! Those 6am mornings were wearing on him!

Parker is busy being Parker! He's calling Adam "Adme" and me "ess-e-ka". He's a little mess. At dinner tonight he looked at Logen and very clearly said (and know, nothing he's said has been 'clear') "Bubba is funn-e" We got him on video last night dancing to Christmas tunes. Priceless. Logen was chillin' eating Lucky Charms- we got that on video too :)

Adam is working like a dawg. It's 'peak season'. We won't know who he is until after Christmas unfortunately!

If it weren't for my drama, I suppose things would be fairly calm here. It's always something, isn't it?!?!

Jessica HR/O2 Issues

I went to my Dr today for what I thought to be a follow-up. I ended up in the hospital having an emergent CT Angiography.
I've been having problems with shortness of breath (to the point I can't talk when in motion), chest tightness, dizziness, a floating feeling. It's increased when I walk up stairs, several feet, or get up and down. It's been going on for about 2 months. I wasn't concerned necessarily, but it's not getting better and ridiculous that a 24 y/o who doesn't smoke and is not overweight can't walk up 5 stairs w/o feeling like my chest is going to explode. So, I thought I'd tell my Dr today. Apparently it's not a good thing.
We did an EKG, chest xray, and labs in office. All were normal. (Haven't had an xray since my surgery in April- that was interesting to see!) So, before I left she put a monitor on me and wanted me to walk around to see what my O2/HR were. We walked about 15 steps and my HR went up to 129 and my Oxygen dropped to 80%. Needless to say she wasn't going to let me leave then. She called the hospital and sent me over there immediately. I've not had the contrast experience before and mine wasn't a great one. My Dr called me herself an hour after the test- I do not have a pulmonary embolism! So, she is going to schedule a Stress Echo-cardiogram and wants to do a Holter monitor for 24 hours. With the rule that if things get worse tonight I go to the ER.
My Step-Dad is a Respiratory Therapist so he brought over his little O2/HR monitor for me to keep a log for the night. My Oxygen has been crazy as well as my Heart Rate. O2 has been anywhere from 74% to 99%. And my heart rate goes from 98 to 125. (My average in the last year and a half has been 80)

So, would you keep both Logen and I in your prayers as things have gone nuts in our house?!?!? Thanks :)