Home again!

Hi Family and Friends!

How is everyone? Well, the last thing I wrote, was that we were heading to Spohn Hospital to the Emergency Room, because the pain inside my ear was too much! I packed a few things, knowing I would be admitted to the hospital! Sure enough! I'm going to spare you the details and the downside of it all, and just say, I'm doing better and hope to keep getting that way more and more each day! I got some IV Antibiotics, 2 units of blood and was sent home w/2 prescriptions for Antibiotics. I got home late last night - right before midnight! My amazing husband and wonderful family helped me through it all and I'm very happy to be home again! I missed my baby Hanz soooo much! Thanks to my dear friends Terry Serna and Alicia Jasso that also came to see me in the hospital - that cheered me up! Be grateful for your health everyone and thank you for your prayers!

Love,

Cyndi

Still not sure when my next procedure will be in Denver. I need to start work again with the Therabite!

Oh No! Not Again!

Hi Everybody! Bet you didn't think you'd be hearing from me again so soon, huh? Well, unfortunately I have something to write about that doesn't make me very happy. All day yesterday and today, I have been wearing a cotton ball in my ear to catch all the "drainage" from my ear during work. I change it out several times a day, and make sure to put vaseline on the cotton ball before I put it in my ear!

Anyway, once we got home, I tried getting some rest, but Hanz wanted to play! Mark went to the grocery store after a bit, and once he got home, I decided to change out the cotton ball in my ear. As soon as I pulled it out, I looked @ it, to see if I was still having drainage and I saw some blood on it. I didn't think too much about it, until all of a sudden my wound dressing is covered in blood! I called out to Mark to come help me out and I was taking the dressing off as quickly as I could! It turned out the blood was not coming from the wound, but from a scab inside the inner part of my ear, on the top! I couldn't see that myself, Mark had to tell me! Of course within seconds the nightgown I was wearing had blood all over it - ugh!

So first thing in the morning, I have an appt. w/one of the doctors in the group my primary care physician belongs to. We'll see what he decides to do with me! Catch you later!

Cyndi

P.S. Guess what? Can't stand the pain anymore, so we're heading to the Emergency room @ Spohn Hospital! Don't think I can get any sleep! Poor Mark and Hanz! I'm ruining their lives!

Bloody Monday

Hello to all!

Thanks for checking in with me, I really appreciate it! So much always going on! Last week Mark had taken time off work, so I had really enjoyed having him home - so many honey-do's for him! It was nice having Mark and Hanz drive me to work and then both of them picking me up in the afternoon!

Our shower is finally finished, so no more walking to the back garage apt. to get cleaned up! So happy about that! We both started our week off a little sad that Mark had to go back to work and that Hanz wouldn't have Mark to play with any more during the day! Marks van has been needing some work, so he's been dropping me off @ work in my car first and then heading on to his job! I have to say that I've really enjoyed that extra time we get to spend together in the morning! It's especially nice for me on Mondays, since that is Jury Duty day @ the Courthouse and parking is horrid!! My co-worker Kathy had been off almost 2 weeks and she was returning back on Monday as well. In the early afternoon I was having a conversation with Kathy, when she goes, "You are bleeding from your wound a lot"! I immediately go to a nearby mirror to look, and sure enough! My wound dressing is completely red with blood that is running down my neck! I grabbed a couple of napkins from my desk drawer, bent down to get my wound care bag, and asked Kathy to call our co-worker Diana! I rush to the bathroom and removed the paper towels I was holding to my face, so I can see where the blood is coming from. I have to remove the dressing and could see where I was bleeding from! By the time I did that, my friend Diana was knocking on the bathroom door. I let her in and locked it behind her. We stood there as I held a wet paper towel to the area I was bleeding from, trying to get it to stop. The area really looked gross - ugh! Mark had put a new dressing on it the night before, so there was a lot of Silvasorb Antimicrobial wound gel on there. I had been feeling pretty rotten all day long - I've been fighting an ear infection for a while and I had been in pain! When I originally started feeling like I had an infection, I had called up to CO to get an antibiotic prescribed. I got some Augmentin and that seemed to be working. When I went to wound care, they took a culture of the goop in my ear and sent the results to Dr. Zane - ENT, and he switched me to Bactrim to get rid of the infection. Well, after a few days on Bactrim, I was feeling pain again, so I wanted to go back to the Augmentin! I called Dr. Zanes office and got him to ok changing me back to taking the Augmentin! Unfortunately, I started feeling pain again that was soooo bad! It felt like someone was jabbing a sharp pencil in my ear - yikes! I had been writing earlier @ work and got one of those pains and just dropped the pen from the severity of the pain I was feeling! Back to Diana and I in the bathroom ... I called Mark and told him what was going on. Told him I wanted him to come and get me and take me home! Mark knows I usually tough out any bleeds I've had @ work, as does my supervisor - so both knew when I said I wanted to go home, I must be feeling pretty darned bad! Went home and got in bed!

Today I was hoping to feel better, but I was in pain most of the day! It wasn't until about 7pm that I started feeling better! Whew! I was in so much pain earlier, it felt like my ear was on fire! Mark said if I wasn't better soon, that we would go to the ER and get me admitted to the hospital! I was ready to take him up on that too! I hate the thought of being in the hospital and needing IV Antibiotics because the worst part of that would be how much I would miss our baby Hanz! Sunday Hanz tried out his playpen that we got him @ Once Upon A Child - a resale shop w/infant wear, toys, etc.! Our family all got together after Mass on Sunday @ Moms, so Hanz tried out the playpen! Mom was pretty excited about it, since Vicente isn't crazy about Hanz running around inside their house! Mom goes, "Look, I think he likes it in there"! I told her, "Of course he doesn't like it, YOU like it, but he sure doesn't"! See photos! Our nephew Davis was visiting from A&M Galveston! It was so great to see him - he's so handsome!

Allrighty then! Just thought I'd fill you in on the latest! Unfortunately, what with having so much pain, it's kept me from doing the Therabite! The last thing I wanted to do was the Therabite when I was hurting so badly!

I've got to hang up some clothes that I have in the washer! I had bled all over a new polo shirt on Monday! We are currently using Resolve to remove blood stains and that seems to be working well! Any other suggestions?

I still need to take a shower and iron my clothes for tomorrow! Mark has to change out my wound dressing as well! He is so amazing as my wound care person @ home! Mark is extremely patient and does an awesome job!

Thanks for checking in on us - I always wanted to keep you posted on the latest fun on having an AVM! Actually I'm pretty much @ the end of my rope! I've told Mark that I'm ready to have the stupid trach, and if I bleed to death then so be it! I say that, because I'm very concerned about the big vein I have in front of my neck! I fell that if I have a trach, that vein will really give us trouble! Dr. Reed (Head of Voice & Swallow in Denver) has always said we could get around it, but I can't help but think that there will be massive bleeding from that area! Plus, then we'd have to deal with cleaning the area and make sure it doesn't get infected ...! I just don't need another thing to worry about, you know? Isn't it enough that I have had the wound dressing almost 2 years?! I feel like I'm fighting a losing battle! I can't help but picture myself trying to climb a mountain, and every time I reach up to climb higher, someone up there kicks me back down from reaching any higher! I'm just tired of feeling rotten and tired of fighting and having one obstacle after another to overcome! I'm not saying I'm giving up, but it sure is hard to keep fighting! Take care y'all and don't take your health for granted! Love to all of you!

Cyndi

P.S. I thought I was doing better as far as the pain in my ear, but nope! I am sooo tired of the piercing pain, that I made a doctors appt. for tomorrow - my primary care physician is on vacation, so I'll see another doctor in his group. No telling whether they'll decide to put me in the hospital for IV Antibiotics - I'm sooo desperate for relief, that I'm willing to go there, as much as I hate the thought of an IV and of being in the hospital! Why? Well, first of all, that would take me away from my baby Hanz for several days! Sniff, sniff!!! Also, that means Mark works all day, then goes home for a quick change and then he comes to spend time w/me in the hospital! I don't want him doing that, because then poor Hanz will be Home Alone! Mom said she would spend time with me in the hospital. I love the idea of just sleeping and reading and feeling better though! I'll try and keep y'all posted!

Wound care

Hi Family and Friends!

How is everyone? I want to share another of my wound care sessions with you! It just so happens that Mark had taken this week off of work, so I had him come with me and take several photos!

We arrived @ Spohn Hospital Wound Care Center and had to wait about an hour before we were seen! Dr. Larkin kept asking us if we were willing to see another nurse other than Noel and I kept saying no! I explained to Dr. Larkin that it's rare that Mark come w/me, so I really wanted the two of them to compare notes on wound care! You'll see a photo of Noel measuring the size of the wound, after having removed the Tegaderm (clear tape) from the wound. Mark and I had told Dr. Larkin that it takes a lot of moisture and soaking of the surgicel before that comes off - we put surgicel on any area that might look as if it may cause a "bleed". Mark felt that the surgicel needed more time on being wet before removal, but Dr. Larkin wanted to use the tweezers, instead of Marks suggestion of a saline soaked q-tip and she pulled that surgicel off, causing a bleed! Nothing major as far as a bleeding - what you see on the towel is all I bled. So, in the photos you get to see my ear w/no dressing, Dr. Larkin holding pressure where the bleed is coming from and then of course my favorite pictures of all - our baby Hanz!

I get this question asked a lot - am I in pain? YES! There are times the pain is hard to control! You know from a previous blog entry how hard that can be! After a wound care session like the ones pictured - my face felt like it was "burning". The pain went away after a bit - but there are times I'm @ work and I have to get past the pain in order to start working!

This latest blog entry is just to give you an idea of what some of my days are like w/an avm. At times it seems it will never be over. All of you play such an important part in helping us get through these difficult times! All of your prayer and encouraging words make a difference!

I'm still working with the Therabite System. I'll probably need another month before I even think of calling Dr. Yakes for another appointment! Thanks again everyone!

Love,

Mark & Cyndi

Finally!

Hi Folks!

How is everyone? Did y'all have a great 4th of July weekend? Before I start talking about the weekend, I want to tell you about my most recent wound care session! It was finally here - the day I would get some care for my facial wound and I was really hoping that I would have my favorite nurse, Noel! Mom takes me, for moral support, as sometimes I have a bleed! I so appreciate her taking time from her day to be with me, it means a lot! We arrive @ Spohn Shoreline and get to the Wound care department, where Robert escorted me to a room to take my vitals! It's usually Eric doing that, but he took month off to be with his girlfriend and their newborn baby! We waited an hour before seeing Noel. He took my dressing off and Dr. Larkin came in to check it out! She was sporting a new do, along w/a couple shades darker hair! Actually, someone from Spohn named Jill came in to talk to me - so that we could make sure we were all on the same page. Apparently, since I walked off last time when I couldn't see Noel ... I guess they want to make sure their patients are happy? I explained my delicate situation to her - what w/the avm, I tend to bleed and I think the other nurses are afraid to work on me! Noel is awesome and has no fear! I was afraid of a bleed, as I had a little piece of surgicel on a "troubled spot", but nope! Whew! Toward the end of getting my new facial wound care treatment done, I was being serenaded by Noel! Those are the happy days I remember before we started having some problems. I was a happy camper! Dr. Larkin had mail-ordered some wound care supplies for me, so that will help too! My next wound care session is on Thursday the 9th! I'm excited because Mark is off this week from work, so he'll be able to come with me!

I have an appt. w/Dr. Zane (ENT) to debried my scabby ear on Tuesday, and again, I'm counting on Mark going with me!

Ok! Back to the plans we had for the 4th of July! My sister Celia and her husband Greg had invited us out, we had planned the menu, and had asked Jim and Shelley to join us as well! We were all excited - planning a great evening full of great food, company and games! The day before, I was giving in to the drowsiness my meds give me, so I had taken a nap and missed taking my main pain med, an Oxycontin @ 4:30pm. By the time I woke up from my nap and realized my missed dose, it was 9:30pm. So I wrote down the hour and the medicine I took on my little spiral notebook I keep in my med bag. Well, about 11 pm, I'm starting to feel withdrawl symptoms. I'm antsy and restless, hot then cold then hot right away! I figured it would go away and that it was happening because I took my Oxy too late! Mark suggested I take a Xanex to relax. I rarely take one, but in this case, I could tell I needed it! I kept getting in and out of bed, trying to eat something and trying to decide whether I was hot or cold! By 2am, I took another Xanex because I was hoping to pass out and not feel so anxious anymore! Finally, by 4am, it was safe to take another oxy, and I did! I must have passed out after that, because I don't remember anything afterwards! All this while, my baby Hanz was such a good boy, putting up with mommies tossing and turning! Mark was awesome too - he could have made a beeline for the couch, but instead he asked if there was anything he could do and stayed close where he knew I needed him! In the morning, the fitted sheet near my head had come loose, as had one of the two pillows that I sleep w/under my knees for support - one of them had fallen out of the pillowcase on to the floor! This is the good one - guess what I found on the coffee table near where I sit to watch TV? That oxycontin that I thought I took @ 9:30 p.m.! NO WONDER I was having withdrawl symptoms! Yikes! It was a miserable night for me! I just wanted to jump out of my skin and flail my arms around! So, of course I was exhausted in the morning! I have to say that I was relieved when Celia called saying she wasn't up for having company, as she is still getting over that crud she can't seem to shake! I was already wondering how I was going to get Mark to not want to stay out @ the Fossums so late when Greg called, saying there was a change of plans! As you can imagine, I've been trying to catch up on some much needed sleep after that night from hell! Hanz and I took a nap earlier this afternoon! I had looked forward to spending time with our family though - it isn't often Jim and Shelley get to party w/us @ the Fossums! It was going to be a really great afternoon - oh well, another time I guess.

You know what Mark and I ended up doing? Mark changed out my dressing. Got some sushi, popped a movie in the dvr and ate in bed! That was neat - we don't take the time to do things like that! That was a nice holiday treat for me!

Oh! Have I mentioned the latest series of books I'm reading? I wasn't too sure about them @ first, but I've come to enjoy them. These books are from a series called House of Night and the author(s) are a mother/daughter team - P.C. Cast and Kristin Cast! Here is the cover of the one I'm reading now! I best go and get something ironed for work tomorrow! Still have to do a couple of Therabite sessions and Hanz is wanting some attention as well! Take care all! We love all of you!

Mark & Cyndi