My Journey with Advanced Bionic ® Cochlear Implants

Left side update

So far, everything is going pretty well, EXCEPT for the fact that the processor went wonky on Saturday. I noticed it wasn't sounding right. It'd sound like it was dying, then cuts out for maybe 2 seconds, then comes back on.  At first I had thought it was the battery so I switched to a fully charged battery.  It kept doing that and that's when I decided to pull out my spare one, even though the programming on it is TOTALLY different. It hadn't been updated since January.  I just tested it for good 30 minutes to see whether it was really the processor or the battery. The battery was fine the entire time, which brings me to think that the processor is either wonky or the programming that was updated on Wednesday.  I had emailed my audiologist, Brenda on Sunday morning to give her the head up so she would know what was going on. I am definitely bringing in my spares for both side and get them updated with the new programs so this doesn't happen again. :( I haven't been able to wear it on the left side since Saturday night. It SUCKS.  I was getting used to it again. LOL! It happens!!

Overall, I saw Dr. Goebel on Tuesday because I had suspected I had an ear infection, but it turns out to be swimmer's ear, LOL!  So, I got ear drops for that. The incision is looking really great - it has stopped leaking (there was some leaking for a few days - and it was because a stitch (final one, BTW) was trying to work it way out and it had been for the last 8 weeks. It finally came out and the leaking has totally stopped.  However, I'm still itching due to the new skin healing. It looks GREAT!!  I'll ask Jeff to get update picture of it. 

Okay, I better get off of here and get this posted. I have kids that needs to be fed and get them going to grandma's before I head into STL today for the research study that I am doing (see previous post). 

Research Study that I signed up for...

I was asked to write up about this by few people who were interested in this.  I had signed up for this back in 2008 after I got activated on my right side (first one). I am just now getting ready to do them again as we had to put them on hold due to my medical issues with my left side (which is FINE by the way!! WHOOO!!).  Today my appointment is at 1 pm. 

The research study is being done at Washington University under Dr. Jill Firszt.    The goal of this is to strategies to optimize benefit from the CI and factors that may affect word recognitions in adult CI recipients.  WHY?: This is to determine what factors affect adult CI's ability to recognize words presented by sound alone.   They also will include cause of the hearing loss, how long the hearing loss has been severe before being implanted, measuring the speech understanding with hearing aids before implanted, position of the electrodes in the inner ear, from the CT scans, measures of memory, ability to focus attention, vocabulary, learning, reasoning and adaption abilities, electrode discrimination measures, and information from the implant speech processor program.  Those information will be also included in the study with YOUR consent.

This research study is to last about 2 years after the hook up with the CI.  CI recipients will be working with 2 of 50 words list of one syllable words with whatever speech processor program that they are wearing.  This is to happen at 2, 4, 6 and 9 weeks AND 3, 6, 9, 12, 15, 18, 21 and 24 months. 

The testing is to be about 25 minutes long.  There is no cost for the participation in this study.  (On this one - We will get paid for the round trip mileage, the parking cost AND $20 for each session during the word testing is done.)

You can request for copies of your word scores and sound field threshold results.  It will show you how long it takes you to reach your highest scores and when the study is done, you can ask for the paper that described the result of the study.  That will or may give you the insight into what factors contributes to your highest word scores.

This is hoped to benefit the society by providing the result for basic counseling for the CI candidates on how well that they will/may recognize words after the CI implantation, and how long it will take to maximum the speech understanding.  It is also possible that it will provide the guidelines for developing training strategies to help the other to obtain higher level words of recognition and maybe increase the rate of improvements that may happen with the audiologic program.

*Prior to sharing the information from this study - all idenitifieres will be removed from the data so that the informatioin cannot be directly linked to YOU, due to HIPPA.*

Mapping & Doctor appointment

I had my first mapping appointment on 6/3 since January 15th!  That was my final mapping for the left side before the whole medical situation with the staph infection.   I had been wearing both side at 11 o'clock position pretty comfortably for about a month, since the doctor released me to start wearing the left side. 

I saw Brenda and we talked a  bit about the whole situation with it popping twice, then finding out that I had staph infection, the IV medicines and all that.  It was quite a journey for my family and me.  We went ahead and checked the balance on the left side and it turned out that it needed to be balance out pretty bad.  So Brenda got it all balanced out and turned it up a little bit.    She said there was a new program something to do with sound quality.  I don't remember what it was called, but I'll ask her when I see her on the 17th.  Anyway, she got the new program on BOTH side since we had to do some fine tuning on the right side and turned it up a little bit.  

Now I'm wearing the right side at 12 o'clock pretty comfortable, but the left side is still at 11 o'clock.  It probably will be that way for a while.  I went into the booth to do some tone testing and Brenda said right side is still good and is about the same as before, the left side still need to be worked on, but it was okay for the time being to my understanding.   So I'll be heading back on the 17th for more mapping then again on the 23rd for the research study that I signed up when I first got the CI's. 

I signed up to be part of a research study where they would be sharing my hearing loss, progress with the CI's and I think threshold level. I need to find the paper for the research study and give myself a crash course.  It has been a while!

Doctor's Appointment: 6/4
Doctor Goebel was VERY pleased with everything that has been going on with the incision, except that there is a very tiny leak, but he doesn't think it'll pose a problem since it's where the stitch is. (YEP, STILL!).  I also saw the surgeron and he was happy with it. I had some issues with crusty scab and itching on the incision, which is from the leaking.  Other than that, they said they don't see any issues with it far as we all are concerned.  I will go back in 3 months unless something else arise from this. 

There's something I need to say - I've recieved few emails that are telling me that I was wrong to contiune with the left side implanting and going through with all the staph infection, that I should had the left side implant taken out.  I  am going to say  -- BACK OFF.  It is my life. I made the choice to have them and you have NO idea what I went through when I was growing up with little assistance of hearing aids.  I did this for myself and my family and I do not regret it.  Yes, granted, having the staph infection was a very risk, which occurs with all KIND of surgery -- There are ALWAYS a risk with all kind of surgery so it is NOT just the cochlear implants.  It just happened that I was one of them that contacted staph infection and yes, it could had killed me, but it didn't. I am not going to explain my reasonings and my defense over and over.  I knew what I was doing when I had the surgeries. I researched this with my husband for 2 years while we were fighting the insurance.  Leave it alone and find something else to pick on. :)

 If you can't accept that, then why are you still reading this? 

Nothing to really report about...

There isn't much for me to report as you know I'm a stay at home mom so I don't get out much.  Sad, isn't it? LOL!    Anyway, I have been wearing it at 11 o' clock position pretty comfortably.  The incision is still healing up pretty nicely.  I poked the incision with my nail the other night when taking off my CI and that scared the crap out of me because it started to bleed a little bit. I suspect I must of had popped the pimple that was in that area, which I am having problem with at this point. It is not bad, but there are several pimples right along the incision and I'm wondering why.  I didn't have this issues with the right side, nor the left side at the first surgery, but granting that this was the 3rd surgery I had on the left side. So who knows... This was probably around close to midnight on Monday night and Jeff was sleeping so I woke him up!  I was up late because I was reading Twilight and New Moon. Now I'm waiting to borrow the 3rd book from my friend, Stef.  She encouraged me to read them when I had NO intention of reading it! 

 I have my first mapping appointment on June 3rd with Brenda after 4 months break then I will see Doctor Goebel again on the 4th of June.   Hopefully this mapping won't take long this time.  I think this is the highest I can tolerance while wearing both. So we'll see what Brenda has to say.

Well, folks, that's all I have for you!! :)

Today makes it Day #10

Today makes it day 10 since I was cleared to start wearing the left side Ci!  WHOO!!  yesterday I had to give myself a break on that side. My ear is REALLY sore, even though I have moleskin on the CI processor to soften it up.  It's been a long 4 1/2 months break from wearing it so I just need to get used to it again.

I'm still wearing both of the CI at the 11'o clock position. I still have about 2 weeks left to get up to the noon position before my 1st mapping appointment since January, for the left side.

So far, no sore on the incision or anything! WHEW!!  In fact, the little stitch that has been poking out since the surgery on 3/20, finally fell out yesterday! That was a LONG 12 weeks for it to be holding on, LOL!  At least it's out!!

 I know I'm more sensitive this time around mainly because it's been so long since I worn both at the same time. It's just matter of time to get used to it.   Right now I'm listening to the central air humming along with the fans running.  It's just funny that not even a year ago, I never heard those until the CI's.  It's just amazing trip!

 Just last week, I was sitting next to my husband on the computer, researching a mini laptop for him to use. He is on my right side and he answer the phones and was speaking with our oldest boy.  I could actually hear my son on the other line even though my husband's on the phone! I could understand clearly what my son was asking!! I was floored away!!!  I could hear him go "Hey Dad, is it ok for me to spend the night here at XXXX's house? I heard my husband go "If it is okay with his mom."  My son goes "okay what time should I be home?"  Hubby goes "Be home at Noon"  Son goes "1 or 2 pm, please?" then my husband goes "11:30 am and that's final."  Son goes "Aww, alright. bye."  I actually was surprised at myself!!!  This was done all WITHOUT lipreading and my husband was kind of turn in the other direction.  I asked my husband word for word and he confirmed EVERY SINGLE ONE! I was like YAH!!!! 

There just have been so much going on that I keep forgetting to write them down on the blog to what I've been hearing... I need to get back in the habit of that! 

Just wanted to share that amazing little tidbits! :)

I'm CLEARED!!

I'm cleared!!!!!!!   I saw the doctor on Thursday the 7th.  He was VERY pleased with the progress!  It is STILL closed and I still do have a little stitch sticking out.  He said he is still not going to mess with that. Hopefully it'll fall out on its own. 

So I got cleared to start wearing the BTE! WHOOO!!   However, I had left it at home. Oops! it was crazy that morning so I put it on soon as I got home. I only lasted 4 hours then had to take it off as my ear was SO SORE!  I did better on Friday, however I was dealing with a headache because we were on the bus heading to the zoo (changed to STL Science Center at the last minute due to the downpour rain :( )  I left it alone and dealt with it.  Didn't take it off until around 5 pm that evening so I did pretty good..

Yesterday I left it on ALL DAY until about 8 ish last night. so I was pretty sore!!  BUT I'm getting there!!! :)

PICC line is out!!

YEAH! The PICC line is OUT!!!!!  WHOOOO!!  I still have to wait 24 - 48 hours for the hole to scab over, then I can SHOWER!    The nurse said that it needs to be scabbed over to prevent infections, dirt and water from getting inside since it is pretty much accessible to my heart.  

Guess I posted too early!

I ended up getting an email from the Pharmacist who does my medicine dosages saying that the doctor from the ID (Infectious Disease Center) said to go ahead and stop the medicine as my level were up again. So I am DONE today.  He's going to try to get the nurse coordinator to send a nurse out today or tomorrow to have the PICC line taken out!  WHOOOO!!!!!  That's 3 days EARLY!! It was supposed to be done May 1st, but HEY! I'll take today! :)

3 more days!!!!!!!!!!!!!!!

THREE MORE DAYS!!! The PICC line will be coming out!!!!  WHOOO!!  I got a phone call last night that they were reducing my doses to 40 ML (1000 MG).  I had started out at 1500 MG twice a day.  Now it's down to 1000 MG.  I'm so ready for the PICC line to come out! The first thing I will be doing is going STRAIGHT to SHOWER!!  I can take bath, but I have to keep my arm hanging up in the air to keep the PICC line from getting wet!  It's a sight, I'll tell ya that! LOL! 

I'm ready for this to be over with and I'll see the doctor on May 7th and we'll find out if he will go ahead and let me wear the CI bte. :) Just a few more days!!

Ok, I'm off to drop my kids off at school!!

Yesterday's doctor appointments.

Well, yesterday's appointments went very well! I was very pleased, and so was Jeff.  My first appointment was with Dr. Goebel.  I was seen by Dr. Neely, who saw me in the ER a few weeks ago to check up.  We talked a few minutes about what happened and it was pretty much decided that I had a real bad viral infection.  Was pleased to see me doing well and checked over the incision. Said it looked great and that my lab works looked normal.  Then Dr. Goebel came in and checked out everything and pretty much said the same thing as Dr. Neely did.  The time came down to find out if I was going to try out the CI or not, then this is where it got funny. Dr. Goebel looked at Dr. Neely then to Jeff then to me and said "I'm scared to have you try the body processor!!" and started laughing. Everyone and I just started laughing.  I had a funny feeling when I woke up earlier in the day.  He was nervous about having it messing up the incision, even though it looks GREAT! I still have that one stitch sticking out and they said they were going to leave it alone and see if it'll work it way out on its own.  SO it was decided to wait 2 more weeks before trying the CI. I'm okay with it because at the same time I don't want to have the incision busting open and having to go under for 4th times.  So overall, it went good so I will go back in 2 weeks for another follow up and maybe try the CI this time, LOL!

So Jeff and I headed over to the ID (Infectious Diseases Center) for the appointment at 2:20 pm. The doctor came in and said wow, you looked MUCH better than the last time when you came in. I was like YEAH! HAHA!  Said I was stopped off the Ripframin pills because my liver count was going up just a LITTLE BIT and since I was nearing the end of the course so it was just easier to have me stop the pill since the IV medicine was doing its job. Everything LOOKS great.  NO SIGN of infections at ALL!!  The best part is that the PICC line is coming out May 1st!!   The home visit nurse will come out on Friday and take it out!! WHOOOO!!  At least the end is almost here!! I'd be able to take a full bath and not have to hang my arm in the air and be able to take SHOWER!!  LOL!! 

Overall, both appointments went GREAT!! I was definitely in a GREAT mood. No infections and the PICC line is coming out in 8 more days!! Plus it was BEAUTIFUL day yesterday outside!!  74 degree!! 

Now I'm waiting on the home nurse to come out at 9 am to do the blood works (Monday and Thursday are the home visit from the nurse for check up and blood works.) I'll be glad to be done with this too. :)

Off to get the kids to school today!  Have a GREAT day!!

Today's the day!!!

Today's the day!! I'll be seeing the ENT, Doctor Goebel and the Infectious Doctor, Doctor Camin.  ENT at 1 pm and the Infectious at 2:20 pm.   Doctor Goebel wanted to try the implant today, according to him two weeks ago. First, I got to get him to trim that same stitch that was poking out two weeks ago.  It's sticking out again. So it looks like it's working it's way out. UGH!   Other than that, the incision is still looking great!! I'm starting to get some of my feeling back in my head in certain spots, but the top part is STILL very numb. So I gotta watch those area in case I hit it.Then the Infectious Doctor.. am going to ask about what date the PICC line will come out!! I'm ready for it to be done!  Technically this Friday will mark it 5 weeks so we'll see if I can get it out a week early, but got a feeling that I'll have to leave it in until at least May 4th.. So who knows!  Also am going to see about the results of the staph infection... Far as I know, things are normal, except my liver count must of been off last week because on Friday 4/17, there was a voice mail from the infectious disease center saying to STOP taking the Ripframin pills.. On Tuesday, 4/14 when I saw the Infectious Doctor, he did mention my liver count was off a little bit. So I am assuming it has to do something with that. I'll find out more details today and hopefully blog about it tonight as I'm not sure when we'll be back in from StL. Gonna be a long day.

Okay I gotta close this and get my youngest off to pre-school. 

Finally better... sheesh...

Sheesh, finally got better!  I started feeling better on the 17th. I got up and walked around a bit and was able to take the kids to school and pick them up, but friday night I was back in bed with fever, sweats and headache. GRR!!  Saturday, headache was starting to go away but my stomach on the other hand.   Day is day #2 that it's been somewhat calm.  Headache has been very little, very manageable with ibuprofen and of course, lots of water. :)   WHEW!! I don't even wish that one week on anyone!! Thankfully I have a great in-law's that helped alot with the kids. They took them to school, picked them up and kept them home with then until Jeff got home from work. Unfortauntely, Jeff started working 60 hours shifts that week and will be doing that until the end of the year. :(  So the in-law's had them quite alot.  It was really rough week. I seem to have got over majority of it, except for the coughing.   *sigh*  I'll be seeing the doctor on Wednesday, 22nd at 1 pm and 2:20 pm.  Jeff is taking the day off and will be taking me. This is also the day when Doctor Goebel wants to try to put on the implant and see how it goes.  So, we'll see!! 

Just wanted to let you know that I didn't disappear!  Just had been very sick.

Scary day yesterday!! (edited 4/12)

Man, yesterday was overall a pure chaos day. I normally have a headache when I wake up in the morning because of the side effects from the medicines I am taking for the staph infection.   However Thursday was little different. It was little more worse than the normal ones I wake up with.  I went about on my business during the day. It didn't get any worse or any better so I just got used to it.  Friday morning came... At 3 am I was woken up completely drenched.  The covers, bedsheets, pillows, my jammies, even down to my hair were wet. I was like what the heck because I knew that meant fever.  I got up and went to the bathroom. I felt JUST fine. Just completely wet. I went back to bed and woke up at 6:30 with headache STILL, but it was the same one from Thursday.  I took my temperature and turned out I had low grade fever (100.5).  So I popped some fever-reducing pills and went on to my business for the day. By 8 am, I got text from my hubby that I really should call the infectious disease center and let them know as they said to let them know of ANY fever, due to the staph infection. Off I went and called them and gave them a head up.  They said it was possible it was viral or an infection in my PICC line. That they were going to order a special visit from the home service for the infusion center out of Barnes - Jewish hospital (where I'm getting my treatments from).  They had told me if I started to feel worse than what I was at that point or fever start going up to call them back and they had gave me the on call number.  I chilled with the kids with a movie (Marley & Me) and had the home visit from the nurse for blood works from the PICC line and my other arm so it was kind of pain in the butt.    By 4 pm, I could tell I was starting to feel really cranky. We were heading out to pick up my rx and stop by Game stop so the boys could spend their money that they had gotten from my mom for Easter. They had gotten more wii games and games for their gameboys.  When we got the in-law's to dye the Easter eggs, I could not stop shivering. I had the chills, so bad. I had tank top on, long slevee, my light jacket AND my mother in law's fleece robe! I just could not stop. Half way through, it got to the point where my neck started to get stiff and it was starting to hurt to move them around. At 9 pm, I told my hubby that we needed to go home as I needed to call the on call doctore because it was alot worse than I was Friday morning.  Jeff had the boys in bed already and I was on the phone with the on call doctor. It was determined that it was best for me to go to the ER, given with my history and the staph infection. I asked if I should go to the local one. He said no, I want you to go to Barnes because they have ALL of my history there with the surgeries and the medicines I'm taking. Plus my ENT and infectious disease doctor are based out of Barnes.  It was easier that way. I sighed because this is good 35 minutes away. I said okay, off we woke the boys up and dropped them off at the in-law's. By the time we got there at 10:30 pm, we could tell it was going to be a long night. it was practically FULL!!  We waited for 2 hours!  By then, I was feeling even worse by then. We finally got in the exam room at 1 am, yes at 1 am!!!   the doctor was in probably good 10 minutes later which I was surprised because normally it's a WHILE before you see the doc!  The on call doctor had called the ER and spoken wth them so they were aware that I was on the way. So they were somewhat prepared.  I ended up having lots of test done. CT Scan, x ray, and LOTS LOTS of bloodworks. Everything came back CLEAN! Nothing could explain for the stiff neck or the severe headache, except for one... spinal menigitis.  mmmm.. The doctor came in and said that's the only thing we could try test for.. I was like okay go ahead. I was prepared for it because Jeff and I had watched our middle son, Duncan go through this at 5 weeks old. (viral menigitis in 2001). So I pretty much knew what was going to happen, contested to the test and had it done. It was NOTHING like people have told me that it hurts really bad. I barely felt anything!! Doctor said it'd be an hour before we would know the result..  only that turned in THREE hours!! Jeff and I started to get worried because by then, it was 5 am in the morning and I have my IV meds at 8:30 morning and night, faithfully beacuse I CAN NOT be off by 30 minutes because of its effectiveness.  Jeff started bugging them around 7 am and they said they would have me out in time so I could make it home to have it done. Rememer, it's abotu 35 miles away from home.  8 am comes and this is when I take my bendaryl to prevent allergic reaction (which I had on the very first does -- broke out in rash).  The reason why they decided not to let me go because they wanted the neuorlogy look at the test result to make sure as they had several doctors checking the results to make sure and one of their on call neurologist doctor wanted to check me out to be safe again.  She came by and checked me out and everything was fine.By then, we had found out the menigitis result comes back and it is negative. SO it was determined that I had mild migirane since my eye wasn't really affected and I had not been sick to my stomach or vomiting.  FINALLY at 8:30 am, they bring me the bendaryl and said they'd go ahead and give me the IV med.  *sigh*, knew that was going to be another 2 hours before we'd get home. 9:10 am comes and I'm officaly 10 minutes past the 30 minute timeframe, they bring the IV med.  Jeff was, I would say pretty annoyed.  I was STILL dealing with the headache, but not so severe as it was and the stiff neck was finally giving up...  By the time I got done with my IV med and I already had gotten my discharge sheets, so off I went home! Headache was just barely there, but it was there.  Jeff and I stopped by McDonalds so Jeff could get something to eat as he was starving and I did get sandwhich and fries. We get home and the dogs are going NUTS!  They haven't been out since 9:30 the night before.   I go straight to my bed and get comfortable with my lunch and a soda.   I took a bite of my sandwhich and laid down as my stomach was little queasy.  I conked out!!  I woke up 4 hours later, my lunch is still sitting there and my dogs are sitting on the floor, staring at my lunch. LOL! So I finished eating that even though it was COLD, blech, but hey, it was food! I talked with my mom for good half hour via texting.  Headache is just in one spot now and is almost gone completely. So Jeff and I left to pick up the boys as Jeff's parents kept them over night and kept them for the day so Jeff and I could sleep a bit.  Thank goodness for them.  Now, we all are at home and just gonna chill out. It's been one heck of a night.  It was pretty scary last night.

Now it is time for me to get off of here and get my IV meds out for the nightly routine.  I wanted to tell all the people that emailed, texted and IM'ed me last night and today. THANK YOU! I appreciate the thoughts! I'm OK, just exhausted literally.... 

Have a GREAT weekend!!

*Edited to add this:  The doctors had said that the headaches had NOTHING to do with the implants. I've had people asking me if it was because of the implants and I can tell you, NO. Some of the comments I have recieved states that it was BECAUSE of the implants. I can tell you that much, NO it has nothing to do with it!!  Given with what I had with my very first implant -- no problem at all. None of the headaches started until I started the antibotics except for Friday's, which was far more severe than the usual ones I wake up with every morning.  So again, the doctors said the whole situation had NOTHING to do with the implants. So rest assured!

Update on Doctor appointment today (4/9/09)

I had my follow up appointment today.  Everything went GREAT!! Incision is STILL closed!  I had one stitch poking out so it was trimmed down.  Overall, it is doing really well. The doctor wasn't comfortable with trying the BTE today so we opted to wait two more weeks, barring any problems arising between now and then.  So I'll be going back on April 22nd.  That's also the same day where I'll be seeing the infectious disease doctor (the one that determined I needed PICC line). 

That's about it for now!!  At least it seem like that I'm finally on the road to mending!! Let's hope that it STAYS that way!!!

One more thing to add to I heard those!! :)

I'm laughing about this because it was totally unexpected!  I was laying in bed with my IV fusion Thursday night, watching the final ER! (WAH!). Jeff was already in bed, sleeping.  It takes about 3 hours and 15 minutes total for the IV fusion.  I was nearing the end of it... The house is quiet of course. Jeff had turned the tv pretty low and I could BARELY hear it, but that didn't matter because I had the CC.  I started hearing this really low noise and quickly assumed that it was the IV pump.  It kept going and the the more I thought of it, it just didn't sit right with me because I've had the pump for 2 weeks and I have NEVER heard it.  In the morning, I'm home alone and all the TV are off and I am at the computer while doing the IV fusion so it is that quiet!  I quickly realized that it was NOT the IV pump, so I woke Jeff up and of course, he was groggy.  I said what's THAT noise!!! LOL!  He had to wake himself up to listen better and started laughing. He goes, that's Metzger cleaning his paws. I was like WHAT? HIM??  It was SO low that I actually picked it up with my CI!!!  Then I quickly realized that I would had NEVER heard that with my hearing aids, of course, I started tearing up about that!!  Jeff was beaming that I actually heard it!   That's pretty amazing!! :)  I had to share with you all! That it DOES work!!

Got a phone call yesterday...

I got a phone call yesterday from the pharmacy, the one that has been shipping me the IV medicines, that they were told to reduce my dosage for the IV meds.  You see, I have to take 2 syringes (they both are at the 30 ml).  I was told to take the 2nd dose and remove 10 ml so on the first one I'll be taking full 30 ml and the second one will be 20 ml.  From what I am understanding, that the antibody was showing up in my blood works - but is not affecting my kidney or livers (It affects liver, kidneys and hearing pretty bad from what I'm reading).  They said they wanted to play it safe so nothing would get affected.  So here we are. I'm hoping that we'll get to reduce it a little bit more next week or so - the side effects are pretty bad and I don't even wish it on anyone. I'm miserable with it, but am sucking it up because the cochlear implant is what I wanted, but not this whole IV fusion and having the staph infection definitely wasn't in my cards..  Oh well, life deals you some crappy cards sometime...  I'm trying to make it the best I can deal with and hopefully that the results at the end will be well worth it.  Thankfully I'm glad I have awesome doctor that is doing everything he can to make sure that I don't lose it. 

So that's it.... I'll be going back on Thursday, 4/9 and we'll be trying out the BTE.  I'm little nervous about that, but am kind of ready for it, though. 

(am still working on the picture links in the posting...)

Update on Doc visit (4/2)

Stitches are out!   Both doc said it looks great!!  Said infection and the big step (incison off the implant) were the reason why it busted open

Said blood tests from Mar 26 looks good!  Keep on abx still.  Next thurs is next appt and will try the implant! I'm nervous abt that one

Overall, it went great!!!  Said the numbness is because they had to cut a large mass of skin and muscle and moved it to cover the step. It will go away but it maybe a QUITE a while.

So that's abt it!!!

Just so you know... :)

Right now, you can see the pictures in the post, but if you click on it -- it will tell you that it doesn't work.. Be patient. :)  I just moved my blogs back over from wordpress to typepad.. so all the link to enlarge the pictures aren't working --   My kids starts their spring break this afternoon!! So I will have more time to get  all of that fixed as we won't be going anywhere for spring break due to the IV fusions that I am doing (twice a day for 3 hours)

On the other hand, I'm heading to the hospital today to see my doctor and have the stitches taken out. I'm really nervous about it!!  If you're just now tuning and are behind on news..  Scroll down to around March 20th.

Have a GREAT day!

Update on Doc apointment (3/26)

• Well, today was eh – eh day. Today was the 2^nd follow up appointment and we finally found out why the incision kept popping open – turned out I tested positive for staph infection. This was my 3^rd swab (3/18) and the first two had popped up negative and finally popped up positive. So now we know WHY the incision wouldn’t heal properly. Since I had the surgery Friday (3/20), Doc went ahead and started me on iv fusions to be done at home and a pill (three times a day). I’m on a pretty strong antibiotic for the next 6 weeks. 3,900 mg a day to be exact) The doc did say that my white cell was over 50K and it was WAY high, but it’s coming down with the IV fusions and pills

• I’ll be going back on Thursday (4/2) and that’s when the stitches will be coming out… I’m already dreading this one!!

Update from today's nurse visit

• Well, the nurse showed up at 9 am to set everything up and walk us through in doing the IV medicines.  Thankfully the insurance is covering EVERYTHING.  Six weeks of the IV stuff and medicines.  The visit was decent - I was half way the first doses and I had allergic reaction - I broke out in rash!  A very very dear friend of mine, Stef happened to be here and she had some bendaryl on her so I was able to get 2 pills from her.  It was weird seeing that happen already.  The doctor did warn us about that yesterday, so it wasn't a surprise though.

• I'm taking 2 doses of the IV med (see previous post), twice a day.  The nurse showed Jeff and me how to set up the IV and added extra 12 inches tube to the PICC line so I could so it myself if Jeff happened not to be home when it's time for it. I am to take it every 12 hours.  Once I was all done with the IV med and the nurse left. I had to go and take a nap -- it made me SO sleepy and turned out to be 3 hours naps.  WOW that's a long nap and I RARELY nap.  So that's about in nutshells that's been going on...