Wound Care Adventures!

Hi Everybody!

Hoping all of you are doing well these days! I just had to go over my last entry to figure out where I left off! If I don't blog when these things happen, I'll forget and who has time to blog during the week? Not me!

So I'm generalizing when I say that last week Monday during wound care - as Dr. Larkin was removing the dressing on my facial wound, I had a bleed. She and the nurse that was helping caught it right away and put pressure on there until we could get the surgicel! So she continues on with removing the old dressing she had been working on, and I have another bleed! Yikes! More surgicel! Managed to get the wound area cleaned and redressed. Dr. Larkin asked about my next appt. w/Dr. Zane (ENT) and got it moved up a week for me! We needed him to get my ear cleaned up from drainage and scabbing.

Anyway, went back to wound care on Wednesday and this time my favorite RN, Noel was helping Dr. Larkin remove my dressing. Would you believe I had another bleed? This time from my ear. Got some surgicel put on that area - it was along the outside lower edge of my ear. I used to leave work @ 4pm to make a 4:30 wound care appt. - and they would be done about 6pm and I'd head home! Now, since I've had these bleeds, Dr. Larkin wants to make sure there is always a doctor around, so she's moved my appts. to 11am - that means I have to leave work @ 10:30 am to make that appt. and am lucky to get back to work by 1pm or 1:30pm! I hate to miss that much work, but there is no way around it! I am fortunate that my supervisor Mr. Rios is being very understanding and working with me by letting me go to these appts. and letting me work through my lunch hour to make up some time!

Celia voluteered to come with me on my Friday wound care appt. and I'm so glad she did! It makes a big difference having someone there with you for support! I introduced her to some of my favorite peeps there - Eric, that takes my vitals, Carol is an RN and has redressed my wound. She told Celia, "We love your sister here"! I was fortunate enough to have Noel be the RN to take care of me for Fridays visit. As he was changing my dressing, he had looked away to get something he needed off the medical tray and I had a bleed. Fortunately, it was not arterial, it was from a vein, so it was flowing, but not shooting out! Not a problem and Noel remained completely calm! Celia wanted to give him a standing ovation when Noel finished redressing my wound, for the outstanding job he did! Whew! We were happy - it was finally the weekend!

Saturday was my mom Mary's 74th Birthday! (See photo) Hanz was bathed, so he could smell all nice and sweet for Grandma! Oh we had so much fun! Celia picked up some BBQ for everyone and we all met @ moms to celebrate! Hadn't seen my nephew Mark in a while, so it was great seeing him! I was worried about him bringing his dog, Hula - thinking she would trample over my little Hanz! No, soon as Hula was brought in to moms back yard, Hanz completely took over chasing Hula all over the yard! They were hilarious! Hanz doesn't realize he is a little dog, and had the best time playing with Hula! We all ate and had Key Lime Pie for dessert from Red Lobster! We all played Mexican Train and guess who won? ME!

Early this morning, about 7am and we were still in bed, I felt my neck thinking I was bleeding. I turned my bedside lamp on, yup! I woke Mark up and headed to the kitchen sink to removed my dressing from my face to figure out where I was bleeding from! It was the wound on my face - it was arterial, but it was a thin stream of blood shooting out - not like that time that I had so much coming out! Ugh! We were not happy having to get up so early and to be woken up like that! It was hard finding the exact area to put pressure to control the bleeding. Mark had to get my pillow cases (the regular one, the allergen cover one, plus the one that also covers the pillow because it's one of those contured egg crate pillows) and the twin size allergen cover I have over all my pillows (because there are 2 or 3 big pillows we stack to get me to the right angle and height for me to sleep). All of those had to go in the wash.

We waited a while after getting the bleeding under control to redress the wound. After we did, we lay down for a much, much needed nap! I slept almost 5 hours! I needed that badly! I used to always try and make time for a nap on Sundays to recharge my battery before our week started! Some of my meds make me so drowsy too! Since we've gotten Prince Hanz - our naps have pretty much gone out the window! Hanz is just too cute and I hate leaving him alone for too long, so I deprive myself of that nap. Oh well. I keep hoping that one of these days when he is completely potty trained, that we can bring him into the bedroom sometimes and maybe he can take a nap with us! Mark won't have any part of that though, so it isn't looking like Hanz and I will nap together.

For all of you that always say I'm so brave and strong to handle all of this I'm going through - take a good look at my mother. She is the pillar of strength that raised us on her own and many a time when life was not good ... she held her head up and kept on going! I have learned from her example and do the best I can and I have all of you helping me as well! I have terrific co-workers, (some that don't even work in my department!) that take the time to ask how I am and really seem interested in hearing about it! So many of your prayers are helping me through this rough time! I ran into little Jackie Hallmark @ Spohn when I was done w/my wound care on Friday. She gave me a big hug and told me I was in her prayers. Even some of the clerks @ our local grocery store, have taken the time to read my blog and post a comment!

I look forward to hearing from Shalon soon - she just got back yesterday from an embolization in CO! Check out her blog in the next few days to hear about her trip! Got a nice e-mail from Jody - Arie's mom saying how much she enjoys my blog! Had a co-worker tell me not long ago, that in the ten years she's known me, I was always so private - why the blog now w/photos and a lot of personal things? I told her I wanted other AVM patients to be able to read it and know they are not alone out there. Plus, I also wanted people who don't know what all an AVM entails, to be able to understand what Mark and I have to deal with on a daily basis! This has brought our entire family even closer. Like I've said before - my sister and I didn't grow up being best friends - but she has really come through for me during this difficult time! She is strong for me to lean on and helps us in so many ways! Right now she has a lot to deal with - her mother-in-law is very ill and in the hospital in Houston, so Celia is concerned for her husband so much right now! Plus of course her kids - one away in college and her other son here in town.

My in-laws always keep in close communication, as does my brother-in-law Jim and his wife Shelley - thank you! We'll try and get together soon! Hard to come up w/a time when one of us isn't working, or that I'm not in pain or bleeding. Ugh!

Oh! Before I forget - I want to send a big shout out to Dr. Zane!!! I had an appt. w/him on Thursday @ 1pm. Well, right before going out there, I was @ work and I picked inside my left ear! I could feel what I thought was a scab or maybe some of the dressing that had hardened. I picked it and here comes the blood! Right away I could feel my ear fill up w/blood! I didn't know exactly where to put pressure on there to stop the bleeding! I wondered if the surgicel that had been put on my ear Wednesday had come off, or was it bleeding where I picked it or what? I had a mirror on my bulletin board that I was looking into and finally called out to my co-worker Kathy that had her back to me eating her lunch. She got up and got me more napkins so I could put them up to my ear where I was still bleeding. Got my cell phone from my pants pocket and called Mark. Told him what was going on in case I needed him to come help! Told him to wait, that I would try and stop the bleeding on my own first. Called to Wound Care, and I asked Dr. Larkin whether I could come in for them to redress the area! She said I would not be turned away if I showed up - but she would rather I go to the ER or to see Dr. Zane! Meanwhile, I'm still bleeding - but finally got it to stop! Went on to see Dr. Zane and he got my ear all cleaned up from prior drainage and got rid of some of the scabbing on that little "flap" above the earlobe! I could see everything he was doing on a screen where I watched as Dr. Zane also got rid of some old, dead tissue still in my ear. He started some bleeding @ one point, but got that cauterized (OUCH!!) and it stopped! Cleaned out my t-tube that was still in there and really did some great debriding! He is awesome! I'm just glad nothing he saw or did freaked him out! I had been trying to cheer myself up earlier by showing one of his nurses/techs a photo of our little Hanz, and she said Dr. Zane had a puppy like ours too! She told me to make sure I asked Dr. Zane about it and sure enough! He and his wife have a 3 year old female Brussels Griffon! He told me to come over to another area, where he had several photos of her on a bulletin board. One was of her w/her hind feet on a chair and her front paws on the table and she was looking @ the camera and wearing a pink party hat! She was just precious! Glad to know we won't be the only ones spoiling our puppy! That photo was taken on her 3rd birthday! Maybe out pets can have a play date some time! That little Hanz is such a doll - he is exactly what I've needed to get through these difficult times!

Again, thank you everyone for all your love and support! I'll keep updating my blog and filling y'all in on the latest!

Cyndi Schuman

Updated for my BFF Wendy P.!

Hi Everybody!

How are you? This blog entry is for one of my new BFF's from Canada - Wendy Plummer! I had written her an e-mail recently and she wrote back asking a few questions - so that encouraged me to give everyone an update! The last thing I wrote, was that I was going to have a CT Scan, because after having a chest x-ray, the radiologist had said he "saw something" that he wanted a closer look at - therefore the CT Scan. After having the scan, I was told the results would be sent to my doctor. So a couple days later, I get a call from my primary care doctors office - that the doctor wanted to see me the next day and I would be worked into the schedule. Yikes! That doesn't sound good as far as I'm concerned!

I wasn't going to tell my mom and worry her - but then I figured, she is there for me to share things with, so she said she was glad I told her so she could pray for me. I had told my sister Celia as well - and both she and mom wanted to come w/me the next day for that doctors appt.

Told my in-laws and they weren't too happy about how this situation was handled. They as well as everyone else, felt that my doctor could have given me more information on the phone, instead of worrying me overnight! I even called Rhonda Sharp - Dr. Yakes Phy. Asst., to get her take on it! I wanted to know what she thought that "something" in my chest x-ray could be! Rhonda was great and spent time talking to me and made me feel better all around.

So the next day comes, Mom and Celia are w/me for my doctors appt. - and he was surprised when he walked into the exam room that I had my family w/me! Well, I told him I didn't know what kind of news I would be getting, so I wanted to make sure I had support with me! Turns out that "something" that was in my x-ray and CT Scan, was old scar tissue from an infection I had once upon a time! Geez! Here I was all worried - thinking that now that Dr. Yakes finally had my avm under control, I have an incredible husband and a precious puppy that I adore - I felt I was going to get bad news from the doctor for sure! I was happy to get good news, but it would have been nice not to have worried the night before! Oh well - just glad I'm ok!

So ... I had wound care done on Monday, January 19th, also Wednesday and Friday with Dr. Larkin @ Spohn Hospital! They are using a new "thing" called Xcell over the wound, so it keeps it just moist enough. For more information on Xcell, you can go to www.xcellwoundcare.com! That, along w/debriding and cleaning the wound have made a big difference! Dr. Larkin was not in on Friday, but Noel changed my dressing. The whole time he was cleaning it and changing out the dressing, he was singing! I said, "Wow, now that's service! I'm getting my dressing changed AND getting serenaded"! I was telling Carol, one of the other wound care nurses about how Noel was singing, and she says, "Yeah, we call him Elvis around here"!

Yesterday I had wound care therapy in the afternoon, and Dr. Larkin and I discussed Hyperbaric treatment again. She said that it wouldn't do me any good to have only five treatments - that in order to see a difference, I would need to have at least 20 treatments! We had a heck of a time (when I say we, I mean Mark) getting my insurance to pay for the hyperbaric treatment, as each session is $4,000.00! Unfortunately there is absolutely no way I can have that many treatments done! Each treatment takes 2 hours, plus the time it takes to prepare to get in the "tube" and get me out - in other words, if I had an 8:00 a.m. session, I would be done w/a session by noon! That means missing the morning part of my work day! For a month! There is no way I could do that - I'm lucky my job allows me to go to Colorado every 6-8 weeks for an embolization, plus leaving early sometimes for my wound care therapy or follow up doctor appts. that involve either my ear(I see Dr. Zane for maintenance on the T-tube I have in there)or my primary care physician or pain management doctor for avm related "problems"! Whew! I'm actually doing pretty well these days - well, I do have somewhat of a "puffy eye" lately - we think w/my avm blocking an area of my face, it isn't allowing fluids to "drain" properly and they are collecting and causing that puffiness!? I have an appt. w/Dr. Zane to check out my ear and make sure that tube is in there and isn't clogged on Feb. 12!

You know what though? My pain is under control, I haven't had a bleed, my husband loves me and my puppy Hanz is too, too cute! I'm happy and I'll just have to take it one day @ a time until Dr. Yakes is all done w/me!

Our friend Terry Schneider is having a Mass for our intention @ St. Paul in Flour Bluff on Wednesday night, 7pm on February 4th! We have so many friends and family praying for us and that's what keeps us going! Thank you all for your constant love, support and prayers! We'll keep you updated! My next trip to CO is March 4th,5th and 6th and Celia will be going with me! We always manage to have fun and she has been such a wonderful support emotionally for me! Celia is very strong and has handled everything necessary on these trips, so I'm in very good hands!

Love to all!

Mark & Cyndi Schuman

Oh! By the way - in case you didn't know - the photo includes Rulon, Hanz and Saba!

Monday Hyperbaric Appt.

Hi Everyone!

Well, woke up this morning feeling nauseous! Don't know if it was "nerves" thinking about the Hyperbaric Oxygen Treatment, or just the way I slept on my pillows! If those pillows are not stacked right, and my head is too far forward, that causes me some strain and I get to feeling nauseous! In any case, I had to get my act together quick, because we were due to report to Spohn Hospital by 8am! Finally found the Wound Care area, and checked in. Dr. Larkin came in to see me and she met Mark for the first time. Right away, Dr. Larkin said we could not do the hyperbaric w/out having the CT Scan already done - fine by me. Anything that will prolong my getting into that darned tube works for me! So, after taking a look at my "wound area" on my face - Dr. Larkin decided to debried it herself and felt like we should go after that area a little more aggressively. It's such a fine line between keeping it "moist", but not TOO moist - and keeping it dry, but not too dry! So, for the next 2 to 3 weeks, I'll see Dr. Larkin @ Spohn Hospital for Wound Care Therapy, and sloughing off some of that scabbing will allow that area to heal better! We're going to try that before doing any hyperbaric treatment @ all!

And ... just because our puppy is just so darned cute ... here is another picture of Hanz we took yesterday!

I'll fill you in on how the CT Scan goes this afteroon, so check back, ok?

Love to all!

Cyndi

Oh! I almost forgot to mention - that I had been in to see Dr. Larkin once before and had give her Shalons web site address. Dr. Larkin did mention that she was keeping up with it and really liked it! Isn't that nice that these doctors support AVMers?!

January Update

Hi Family and Friends!

How is everyone? Good, I hope! I've been pretty good, for the most part! Toward the end of this past week, I was feeling great! Had my pain under control, hadn't had any bleeds ... until the early hours of Saturday morning. I had asked Mark on Friday night, to put some ointment on the outer rim of my ear and on that little flap over the earlobe, because it was all getting so dry. I had gotten up about 3:30am and I like to check in the bathroom mirror, to make sure my hair isn't all sticking to the ointment. I remember having a good laugh, because our puppy Hanz had gotten loose from his cage he sleeps in, and had dragged 3 different shoes of mine and some socks into a little pile in the hallway - even one of Saba's little socks! Anyway, I had "dabbed" some of the ointment from my ear w/a q-tip and some of the scab had come off - actually an area of scab that I wished hadn't come off and I feared might bleed later. I went back to bed, hoping for the best ... and a few hours later, I felt like I had just started bleeding. Sure enough, I sat up and yelled to Mark that I was bleeding to get up and help me! I headed toward the kitchen sink and I had grabbed a tissue somewhere and was putting it on my ear and the blood was just flowing! I hollered at Mark to hurry w/the wound care bag and by this time the entire front of my pink nightgown was red with blood! I couldn't find a mirror to see where I needed to put pressure to stop the bleeding. Turns out, I wasn't bleeding from my ear, but from the wound on my face! Once Mark brought me a mirror, I pulled the dressing from my face and could see the blood just gurgling out in a thick flow from the top of the wound on my face! I was finally able to grab a wet paper towel and put pressure on my face to stop the bleeding! By this time, I was almost sliding on the floor in the pool of blood I was standing in! Mark could not believe how much blood was everywhere! He had to help me off w/my nightgown that was soaked completely and get that started soaking in the wash! I really needed to have gotten in the shower to get all the blood off my legs and feet, but @ 6am all I could think about was getting back to bed! I "checked" to see how I was doing by moving the paper towel I had been holding to my wound - and after a couple of times that I could see I was still gushing, it was finally just a fine stream of spray, so I knew the bleeding would be stopping soon! With Marks help, I got cleaned up enough and he got the wound redressed so go back to bed! After getting some more sleep, I got up, took a shower and we headed out to see Celia. She and her housekeeper were cleaning Gregs office (their regular clean up crew was out of commission). Celia had been worried about Hanz - he had been sick but was now 100% better! After visiting w/Celia, we headed to Petsmart to pick up some items for Hanz and then headed to Moms! Hadn't been over in a couple of weeks and she and Vicente needed Marks help w/a couple of things! We stayed for dinner and played a full game of Mexican Train! Hanz was so good the entire visit! He loved running around moms back yard! See photos!

Wish me luck - Monday morning will be my first time ever to have Hyperbaric Oxygen Treatment @ Spohn Hospital! I had never heard of this treatment, but my BFF Shalon told me about it and had it done herself! (For more information on Hyperbaric Oxygen Treatment, check out Shalons web site @: (http://sites.google.com/site/shalonsavm/Home). Hopefully, I will be allowed to take some photos and I'll post those soon! Mark took the day off to help me through this the first time, so I feel as safe as I can! Mark is the only one that can get any situation I have under control immediately, so we'll see how I do! I also have a CT Scan tomorrow afternoon. Apparently a chest x-ray I had done showed a "spot" that the radiologist wanted checked out to make sure we could rule out any problem. Here's hoping it was just "one of those things" and nothing more! Will keep you updated, so please check back!

Love all of you for all your wonderful love, support and prayers! We're all on this journey together!

Hugs & Love,

Mark & Cyndi Schuman

Part II of January CO Trip!

Hi again! Here are the rest of the photos I talked about! I don't know how to do slide shows like Shalon, so bear with me! Shalon, feel free to add, edit or whatever you want to improve my blog!

Cyndi- your wish is my command! So here is a slideshow from this trip!!! Hope you enjoy! Shalon





Thanks!

Cyndi

January CO Trip Part I

Hi Family and Friends!

How is everyone? Are we finally catching our breath after the holidays went by too quickly?! Well Mark and I just got back from a good trip to CO! I'll start by mentioning that we were taking a very early morning flight - 5:30 am! I have to back track already and tell you that my left knee had been bothering me and it was really painful over the weekend! So Monday afternoon, I went to see my Primary Care Physician that told me I had arthritis and ok'd me to get a steroid shot! Unfortunately, that meant me hobbling around the airport! My knee was stiff and sensitive and I didn't feel better until the next day!

As we put our e-ticket information on the computer screen @ the airport, one of the questions asked is whether you would mind being bumped to a later fight in case of overbooking. Mark said no problem, so when we arrived in Houston, we were asked to take a later flight (which we pretty much would have had to do, because for whatever reason, I had a seat, but not Mark!) - with the promise of each getting a $200 voucher and they upped it even more, by telling us the flight from Houston to Denver would be first class! That was such a nice luxury, especially w/me limping around - those seats in first class recline and Mark had plenty of leg room too! What a difference from flying coach! In the back they may throw you a peanut and serve you a soda, and in first class it sure was nice to be treated so well and offered yogurt, a fruit cup, juice and coffee for breakfast. I think there was a choice of an egg sandwich. Anyway, we arrived in Denver a little over an hour later - had no problems getting the car rental or anything. We checked in to the hotel, then went to see Dr. Reed - Head of Voice & Swallow Inst. @ his new office location. He feels I still have an infection and is concerned that it may affect my hearing in my left ear. So, gotta follow through w/a few things there, to make sure that doesn't happen.

Meanwhile, I'm pretty close to getting everything approved needed for the Hyperbaric Oxygen Treatment here in Corpus Christi, to help the wound on my face heal! I had scheduled an appt. for that on Monday, but rescheduled for the following Monday - don't want to miss so much work right after I've just gotten back, you know?

Ok! Back to the trip - after seeing Dr. Reed @ his new location - we noticed several places to have dinner, and I wanted to try Mimi's since we don't have one here and I had heard they serve good food! So after a nice dinner we headed back to the hotel and that was pretty much our first day on this trip!

The next morning, I had to be @ Swedish @ 7am to pre-register. Did that and then headed upstairs to a waiting room until the nurses are ready for you! Of course I always ask the nurse if they majored in "IV" installing. Don't like when they can't get that IV in - ouch! The nurse did well - got it on her first try! See photo!

As Mark and I sat around waiting for me to be taken in for my embolization - I could see a lady sitting across from me in her bed! Wendy came over to talk - she also has a facial avm and has been coming to see Dr. Yakes for 6 years and is from Canada! See photo. I've exchanged e-mail addresses w/Wendy, so we'll be keeping in touch!

I was surprised to be taken in early - it was almost noon - but most times I don't get taken back for my embolization until almost 2pm! I barely remember talking to the anesthesiologist and the surgical nurse before I was in LaLa Land! I woke up to find my favorite Recovery Room Nurse Rick Smith making sure I was comfortable! I believe he was "training" a male nurse - Rick is awesome though - he makes sure you have no pain and is on top of everything! Of course there was no room @ the Inn, so I had to spend the night in Ambulatory Care. It isn't too bad, but it's always nice to have a room!

Meanwhile, some fellow avm'ers were all trying to hook up - so Shalon and her husband Josh had already met up w/Arie and her family and they all came over to say hello! See photo! Dr. Yakes had done an angiogram, so I couldn't get up for a bit and I had gotten hit w/18cc's of alcohol, so I wasn't exactly feeling my best! After talking a while, I just had to get some rest - luckily Shalon sensed that and the group started heading out. Mark had a good idea before everyone left - he wanted a photo of the three of us, Shalon, Arie and myself! Look how pretty Shalon looks! She is always sweet and cheerful! Arie is a doll too! This would be her last treatment according to her mom Jody, and then she'll have to come back for a check up in 6 months!

Mark stayed a bit longer, then headed back to the hotel. Showed up in the morning w/some White Chocolate Mochas from Starbucks and a big muffin. This time I had some swelling inside my mouth, so I had not been chowing down right away as usual - I had been on juices and pudding!

Finally, I was able to get into a shower and wash all the dried up blood from my hair! Felt so much better after that! Got all our stuff and we headed out to find Shalon, as her embolization and Arie's were the day I was discharged! On the way to find them, we ran across Dave - another of my favorite RN's! He was part of what I call The Dream Team that took care of me after my very first embolization! So, I had to pose for a photo w/Dave (he is one of those people that really enjoy what they do and they are good at it!) - then went on to look for the group of nurses that took care of me while I was stuck a week @ Swedish in November, but most of them worked evenings, darn!

Ok, we do have an opportunity to spend a little more time w/Shalon and Josh, so that is where we were headed! Also met up w/Arie's grandparents! It's always nice to meet w/the families of the patients too - we are all blessed to have great support teams!

After leaving the hospital, went back to our hotel room to repack and then head out to return the car rental and head to the airport!

Unfortunately my left eye is swollen shut right now, but it should hopefully be open by tomorrow with the Prednisone I'm taking! Ok! I think I'll end this chapter and just add photos on the next! Thanks for all your love, support and prayers!

Mark & Cyndi

On the brighter side ....!

Hi Everyone! Hoping that the new year is treating you well so far! Me? Not so much. A few days ago, I had decided to take a nap, got all comfy in bed w/a good book, when I felt something - yup ... blood! It was coming from the "outer rim" of my ear. Mark had to put some surgicel on there to stop the bleeding. That was New Years Day. Well, this afternoon I took a shower and was already drying off, when I noticed I was bleeding. Ugh! Instead of all the boring and gory details .... we now break off to a brighter subject!

The newest member of our family finally has a name! Come and meet Hanz! He is a Brussels Griffon, is several months old and a real sweetie! Although, rumor has it that when these puppies hit their "terrible two's", we'll have our work cut out for us! I wasn't too sure about him the first couple of days, but once Mark bathed him and he got a hair cut ... we've become inseparable! Originally, our plan was to wait until I was all done w/my procedures before getting a puppy, but we came across an opportunity we couldn't pass up and got the puppy early! Unfortunatly I'll be missing him the few days we'll be in CO, but our neighbors Keith and Gabby will be taking care of Hanz! He gets along w/their lab, Skip ... although not so much w/their cat Abby! Our cats aren't sure what to think of Hanz, I don't think they're too happy about him getting to be indoors all the time! I took Hanz outside for a bit today and he was so happy when a neighbor a few houses down was outside w/her Shitzue!

Anyway, since I have to work tomorrow, I'm off to get a few things ready and head to bed w/a good book! Here are a few photos of our little Hanz! Course that's Mark holding Hanz - taken in Moms back yard. Mom is holding Hanz on Christmas Eve @ her house, and the other one is Hanz taking a nap!

I'll blog when I get back from CO! Take care y'all!

Cyndi