So, we heard back from the ID doctor Monday night.  I got answers, but we also have more questions.  Cody still is having diarrhea and headaches.  We ended up taking him in for a blood draw yesterday so we can get some idea of what else could be happening.  I want him OFF this med so that we can KNOW what is causing it.  His eosinophil count is lower, but still not normal.  He woke up this morning with a headache before he even got out of bed.  That just isn't normal.  He was not like this at all before the ablation.

I put in a call to the doctor's office and I'm waiting to hear from the cardiologist about taking him off the enalapril.  We have an appointment with ID doctor for follow-up where we can discuss all of this.  I have notes that I'm going to bring so they can see that it's a DAILY struggle.  Sometimes I think, "well, he's not THAT bad....", but that's exactly what we thought before we found out about his cardiomyopathy...  He honestly has good times during the day where he seems totally fine, but usually he is laying around on the couch so it's not a great assessment.  He's not active like he should be.

I 

We seem to be back into the swing of things.  Still behind...what's the saying, "a day late and a dollar short"...that's me, but I've been hanging in there.  I've been spending a lot of time reading the Word lately which has definitely done VOLUMES for my attitude.  God is good.  Cody's MRI came back "better overall" according to the Infectious Disease doctor.  His labs were a bit abnormal (some protein loss and elevated eosinophils, a type of WBC).  The doctor said this could just be due to the two ablations he had done.  His heart function is just below the normal range.  It appears that the immunoglobulin treatment he had did nothing for him, though.  Still no antibodies and very high viral load.  I have e-mailed the doctor with a bunch of questions and am awaiting his reply.  I'm fairly certain that with the good report on the MRI and the heart that he is going to recommend a wait and see approach.  No anti-virals at this point. 

Even though everything is going so well health wise, I'm still on edge and I couldn't put my finger on it.  A part of it is that Cody has been nauseated and has had headaches most every day since the ablation, although the headaches seem to be less frequent and much less severe.  He complained of chest pain the other day, which really gave me a scare.  He was able to continue with his activities though, so I guess it wasn't that bad...just scary for us.  We are on high alert...his last arrythmia was 29 days from the ablation.  And, since the doctor wasn't sure if he got it all this time, I'm counting the days.  This is day 17.  He said if it were to recur, it would happen within a month or two...not years or anything.  The other thing that bothers me is that I keep thinking ahead.  Do I rush him off to the hospital or the ID at the first sign of a cold or a flu?  I don't want to be a nervous ninny, but it looks like that's EXACTLY what I'm going to have to be.  It's like the boogie man.  YES, I TRUST GOD.  I DO.  It doesn't change the fact that we may still walk through more scary stuff.  I'm more of a "planner" than I ever realized.  And I'm learning that with this virus, we don't get a plan.  There is no protocol.  We just watch and wait. 

We are so grateful to God for watching over Cody through all of this.  I look back and count how many "lucky" times we've been through during all of this.  It isn't "luck".  It is blessed.  Some people would think, "gee, then why did he GET sick like this if he is so "lucky"???".  Well, I really think it is all for God's glory.  And, I don't believe illness comes from God; it comes from a fallen world.  I have faith that God can heal Cody and make him whole.  I know that God has great plans for Cody.  He has it all figured out in His perfect will.  When I pray, I now try not to make assumptions.  I assumed his ventricular tachycardia was "fixed" from the first ablation.  We were past that.  I was wrong.  God had other plans.  We were brought back to U of M and if we're brought back again, I know it is part of God's Plan.  I don't have lack of faith that God has healed Cody of V Tach, I know that He may have, but I feel like God is humbling us to accept  and TRUST whatever it is that He has planned for Cody. 

Cody had his ablation on October 3 as planned.  They were able to start up the arrhythmia as they had hoped and then map out the electrical function of his heart.  The doctor said that just as they were going to ablate (burn) the three areas they believed to be causing the problem that his heart went back into a normal sinus rhythm.  They like to do the burning while the patient is tachycardic because they can know better whether it actually worked when the heart goes into a normal rhythm as they do the ablation.  Then they put the heart through paces (exercise) and use drugs to try to induce another tachycardic episode.  IF it doesn't return, they know that they were most likely successful.  IF it does, they do some more mapping/burning.  He said he HOPES it worked.  We're praying it worked.  It's in God's hands. 

Cody ended up with another headache after he came home from the hospital.  It was so bad, he was moaning and crying and he wanted to go back to the hospital.  We were worried that it could have been a clot from the procedure or an allergic reaction to the general anasthetic.  We gave him Tylenol which didn't do much for him and we ended up taking him to Beaumont.  THEY WERE BUSY in that ER.  His headache abated about 2.5 hours later and we ended up taking him home....Thank You, God.  He's had headaches everyday since, but not nearly as bad.  On Thursday night, he went to bed at 7:00 with a migraine....and slept the entire night.  He's been taking tylenol pretty regularly to keep his headaches manageable.  It hasn't stopped him from having an overnight guest last night and they are still playing strong.  It must be a record, though....Cody crashed out at 10:00pm WITH a friend spending the night.  He still needs his rest....

His follow-up appointment with the Infectious Disease doctor is Tuesday.  It'll take about a week to get his bloodwork back.  We're praying that it shows he has antibodies.

Yeah, so this is supposed to be a homeschooling blog, I know.  The problem is that REAL LIFE keeps getting in the way.  We're not getting much done in the way of "school" this year so far with all of the extra hospital visits (4 since Aug. 23) and doctor appointments.  We are supposed to be doing Sonlight and haven't even begun.  I realized the other day that Cody doesn't seem to remember his multiplication facts very well and we are SUPPOSED to be doing division....so, BACK UP, and do some remedial work.  Trevor is doing okay, but I really need to get on Homeschool Tracker and get it going so he knows what he should be doing every day.  I am having the time of my life trying to get Shannon's reading lessons in....details, details, details.  Then there is always the housework....

To put it in perspective (for the homeschool Mom in me), I know that they are still learning.  Cody has read just about everything about arrythmias there is and could give an adult a pretty good education about the different types of tachycardia and can pronounce them all.  Trevor has been keeping up with his Biology class at HS connections and has been doing a fair amount of schoolwork here at home.  I just wish I could get it all organized!!!!  God is helping me with that.  One step at a time.  As homeschoolers, we just have lots of STUFF to keep up with ...books, toys, games.  It makes you crazy after awhile.

So, Cody's headache resolved by last Friday, the 21st and he was feeling much better over the weekend.  AND THEN....

We went to church Sunday the 23rd, the busiest day of our week.  We have morning church, then Cody and Shannon have play practice while Trevor has TBQ practice at 3:45.  And evening services start at 6:00 till around 8:00ish.   My dear Mom has been taking the kids back to church in the afternoon for practices. Last week I decided to help Sean with the house in the evening because we were still getting ready for the Youth party and had some chores that were neglected over the summer with Cody's illness.   I pick up the kids at church around 8:00 and we finally get home and are ready to crash.  Cody is on the couch on one side and Sean is on the other.  He casually mentions that his heart feels like it's beating "kind of fast".  Sean immediately looks for a pulse while I decide to find the stethoscope.  He thinks it is normal, but he checks it with the stethoscope anyway....ummmm, 180 bpm.  SOOOOOO, here we go again.  And we are tired.  Adrenaline kicks in immediately.  I call my Mom while Sean calls U of M cardiologist fellow on-call.  He calls him back and tells us to get him in immediately and that they will be waiting for us.  Trevor helps pack us a bag and I decided this time I needed to leave the baby at home. 

When we arrive at the hospital, we get another call.  It is the doctor from U of M checking to see if Cody is alright AS we are walking the ER....AND, can you believe it was the same doctor on call as the last time we brought him in???  God is amazing....he works out all the details.  So, we didn't have to give nearly the same amount of background info as last time which was a nice change.   Within a half hour they had his IV in (had to do it twice, poor kid) and gave him the verapamil.  It again worked almost instantaneously.  AWESOME.  They moved him to the peds floor at around 3:00am and we both stayed the night.  Dr. Dick, the electrophysiologist, came to see him in the afternoon.  He ordered verapamil orally and said he could be discharged until he got in for another ablation next week.  He thinks that this is the same spot and that it was reactivated and that he didn't get all the cells causing the arrhythmia.  The ablation is scheduled for 10/3, Wednesday, first thing in the morning.  We have to be at U of M at 7:00.  YAWN.  We are praying that this will go off without a hitch and be the LAST TIME he has this problem.  If all goes as planned, he will be able to go home that evening, God willing.

We're surrendering all of this to God.  Only He can know the future.  Every time we get caught up in the here and now and getting all these different things done, it seems like God is telling us to slow down and remember the important things...  It was an emotionally draining day last week even without Cody's ER visit.  The Holy Spirit was moving in our church and Pastor Cal had an incredible message that REALLY moved us to a place we needed focus on...

But, it's getting late and I just want to say, THANK YOU, Jesus for protecting Cody through all of this...

Poor Cody has another headache along with a fever from the IVIG.  It seems he can't get a break.  We're giving him tylenol every 4 hours.  The doctor advised us not to give Motrin because sometimes it can make the IVIG headaches worse....  He sees the neurologist tomorrow for a first consult so we can also have his headache evaluated.

Cody missed Faith Hometeam today...it was the first day.  I took the other kids and Sean stayed home with Cody and went into work late.  He managed to start repairing the ceiling in our living room which was damaged due to water leaking from the upstairs toilet right before Cody was hospitalized in July.  We're trying to knock this house into shape before we host the Youth SNAP in 3 weeks!  Yikes.  This place needs some major cleaning.

Well, gotta go pick up Trevor from guitar lessons...

AAAARGHHHH...

Cody and Shannon were going to be on an Odyssey of the Mind team together this year.  I was a little apprehensive about adding something else to our schedule, but I would rather keep them busy than sitting in front of a tv in the middle of winter.  Looks like the original meeting day of Wednesday is not going to work out and I'm seriously considering just NOT doing it this year.  I need God to answer me on this one quick, though because people are waiting... 

Cody had his first IVIG treatment (immunoglobulin) on Monday/Tuesday.  He was admitted to the hospital on Monday for an overnight shortstay and it was to be infused over 12 hours.  Can you believe that it was Movie Night at the hospital????  How blessed we were!  God is awesome.  Hollywood Video comes to Beaumont bringing candy/popcorn and a new release movie and the kids can feel normal for a day.  When C was in the hospital in July, we were very fortunate to be there for a movie night and it REALLY lifted his spirits.  He ALMOST wasn't allowed to go down this time because the doctor wanted him on the monitor the whole time, but the nurse let us go down for an hour and waited to start the infusion.  They pretreated him with Benedryl and then began the treatment a half hour later.  He began reacting about an hour and a half later.  Flushing all over, h/r was sort of irratic, etc.  They ended up calling the doctor who decided to put him on a steroid.  Unfortunately, THEN his IV came out and his arm started swelling from the fluid.  The nurse tried puting in a new IV, but Cody was having chills and could not stop shaking ALL OVER.  He was finally able to stay still after we covered him with a ton of blankets.  She kept poking and trying to get the IV in, but it was NOT working.  He screamed harder than he ever did any other time they did an IV on him.  It was very distressing for all of us.  The residents were watching him very closely and everyone seemed a bit nervous because they needed to get access in case he needed meds stat.  His bp was up and down and all over the place, but they thought it was because he couldn't stop shaking.  Sean and I prayed and prayed.  Finally, Sean told them they were going to have to get someone else to do it and I told them they were going to have to use the ouchie cream.  The nurse got a different nurse from the PICU (this one was from PICU also, but just wasn't able to get it in).  Kendra came and put cream on 3 different spots using the Vein Finder.  The first one she tried didn't work right.  The next one worked.  Thank God she put the cream on more than one spot!!!  I'm reminding myself to insist on the cream for EVERY IV from now on.  U of M talked us out of it the last time because he was in VTach and it takes 20 minutes for it to work (and they wanted access immediately---the cardiologist actually came to talk to us about getting his IV in NOW).  I just didn't think of it this time.  Bad Mommy.

So, the rest of the infusion was uneventful after he got the steroid.  He got out of there right after it was finished, around 12:30 pm. yesterday.  If they do it again, the doctor said he'd give steroids before they start it.  He's been flushed today and his stomach is bothering him.  The doctor said his rash could come back and he may end up with more steroids.  I gave him benedryl last night for the flushing.  He looks better today though.

8/23/07

Here's the grand experiment .  With starting high school this year, I thought I might as well have a place to put it all down.  Here goes...

Looks like God has an interesting year planned for us.  My oldest has decided that he will homeschool (although I still think he's a little unsure) through high school.  He was sort of ready to quit and we gave him the option to go to public school, but he decided that he'd stay home.  I'm happy for that.  I'm praying that this will be a great year for us all.  It's going to be a GROWING year regardless (and NO, I'm not pregnant).  Shannon is starting Kindergarten  We've been trying to plan our year this past week:   

How many activities are too many and how few are too few????  THAT is the question. 

*****************************************************************************************************

9/1/07

God's Plans are sure eye-openers.  I wrote out the "activities" question and saved the entry to edit later.  The next day I called my friend, J, and asked her about a few dance classes we were considering for Shannon and Ruby this year.  We had a lengthy conversation about our plans for the year and so forth.  We had a CO-OP meeting that evening and I told her I'd see her there later.  Those who know me realize that we've had quite a summer.  Our son, Cody, was in the hospital for 3 weeks in July due to a neurological "episode" and a heart problem.  We had to withdraw him off his meds the day that he was discharged so that he could go into this tachacardia problem he had and get an ablation procedure done at U or M Ann Arbor.  The meds were supposed to take about 30 days to wear off, but we had an appointment with U of M for Sept 6 in case the V Tach didn't start on its' own.  The docs (and ME, TOO!!) figured he'd make it to his appointment. 

God Had Other Plans.  About a half hour after I got off the phone with my friend, Cody mentioned that his heart felt a little "weird".  I checked his h/r and it was 180 while sitting in front of the computer screen.  SOOO, I called my dh and he called the hospital who advised us to take him to the nearest ER...however, we were determined to get him to U of M and we knew he was stable based on his appearance (playing his DS and upset about missing his friend's party the next day!).

He had quite an eventful night at U of M where they decided they wanted to get him out of this VTACH.  They tried cardioversion where they put him under and shocked his heart.  FOUR TIMES.  No change.  They moved him to PICU and gave him a different drug and it worked INSTANTANEOUSLY.   WHEW. 

The next day (8/24) they did the radiofrequency ablation and he was discharged on Saturday (8/25). 

So, I think God is telling me to not sweat it.  I can make as MANY PLANS or do as many ACTIVITIES as I want.  He is in control.  We can't know what tomorrow brings, so live for today.  ALWAYS.