Heart Procedure Recovery

I am recovering from a heart procedure I had last week. I will update soon.

Mitochondrial Disease

Ok... We got some of the results from Atlanta back this week!

It's very complex. I'm in the midst of doing a million things & can't quite explain it all now.

Logen has a Mitochondrial Disease. He also has type 2 muscle fiber atrophy. He will start a mitochondrial "cocktail" as soon as we can find a pharamacy to compound it. There are some financial concerns, the docs say we will have to fight insurance (the doc's office is very willing to write them a letter and do what they can though) and medicaid won't cover this. As far as a specific Mito Disease, we are still waiting on all of those to come in. It could be many months. And, we may never know from what they said. We just know his mitochondria do not function normally. He's "highly probable" to have complex 1 and complex 3- and that's about as much info as we have. It could take nearly 2 years for the meds to kick in b/c they have to get into the muscle. And, there is a chance they won't do anything. As far as prognosis, we don't have one right now.

We are waiting for a big list of precautions from the doc, but were given a few to start with. Things like he can't have a certain type of anesthesia, he can't fast for long periods, no over heating, can't be around people with the flu (b/c it could take him down harder and longer), he may need to be hospitalized for even minor infections b/c of hydration and monitoring.

Please continue to pray for us. Thanks.

St Louis Bound (Again!) & Logen Update

Hey All! Hope you all are doing well... :)

We are on the road to St Louis (again!). Logen has 2 appointments on Monday. He sees the Neuro and Epilepsy Doc this trip.

In the past 2 weeks to 3 weeks he's started having seizures again, so we made a med increase. He's also been having some "quirky" little jerking movements, increased drooling, and just some random things I don't like. So, I was glad it started around the time for our appointments. (If it had to start at all...)

Logen was moved to a new school this year (b/c of injuries last year and lack of progress). So far, so good. He seems to be doing very well. He appears to be happy about staying there and I don't get that "yuck" feeling I got when he was at "the other place".

I will update after our appt! Please pray for good news. Our 3 month post-surgery date is Oct 2, so we *should* be getting something soon! I am getting sooooo very anxious.

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."

Had a heart cath done yest and they put me in cardiac ICU for the night. I don't think ill be goin home today.

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!

So far today we've done the echo, lab work, and pulmonary test. I was not-so-great at the lung thing let me tell ya.

I may b here few days. We r testing my cortisol levels, cardiac enzymes, pulmonary functions, possible repeat echo and possible heart cath. Plz PRAY!!!!!

I'm in the hosp. Plz say prayers. We've had not so good news n last few wks. I fell last night/was disoriented. Will update ltr. Prayers plz. Thnks!