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

Support Group Team!

Hi Everyone!

How are you? My brother-in-law Jim was just saying that he thought I was doing pretty well, since I hadn't written anything on my blog! Unfortunately I've just been dragging and apparently too drowsy to sit and write! I've been having some problems controlling my pain these days and all the meds I take make me very sleepy! The area near the hole in my ear is really looking bad - very scabby! I haven't been able to get in to see Dr. Zane (ENT) because he is on vacation! He would be debriding the scabbing. I've had lots of drainage from my ear too - goopy stuff, ugh! Gross! Yes folks, this is my life right now! I also haven't been able to see my favorite nurse, Noel @ woundcare because of some changes in the office he works in! Went in a couple weeks ago to find that Noel could not see me, because he only worked for the other doctor in that wound care group! Needless to say I was extremely upset! I was able to switch to the other doctor - but when I arrived for my appt. the following week - I was told Noel was on vacation, so I left! Well now the new doctor I was going to see was upset because I left and now she refuses to see me! The former doctor I was seeing agreed to see me, but now I'm being told that I cannot be guaranteed Noel and I may have to wait until he sees all his other patients, before he can see me! Not sure how that's going to work out, but we'll see on the 2nd of next month!

I also wanted to tell everyone that I'm having much success with the TheraBite! At first I just wasn't sure it would work, and it was too soon to tell any difference - until this weekend! I can actually see the difference when I open my mouth and I've noticed it's easier to brush my teeth too! Mark has been instrumental in helping me with making sure I'm keeping up with it and takes measurements every so often! My sister Celia and brother-in-law Greg got me that Therabite, so I really have to thank them for their generosity!

We're also very happy that my brother-in-law Jim and his wife Shelley are so supportive and proud of us for maintaining our high spirits, despite the difficulty of our situation! We need all their love and support - along with everyone else's to defeat this darned avm! Mark and I went out to their place Saturday and joined them for dinner, along with their friends Linda and Buddy! Hanz came with us of course and had so much fun with Jim and Shelley's pets! At one point, Shelley picked Hanz up and was hugging him and her Boston Terrier Emmie came over and looked @ her as if to say, "EXCUSE ME"?! Oops!

Hanz seems to have the most fun with their dog Bessie! See photos! Ok, I'm signing off, but just wanted to give y'all an update on what's going on! I'm going to keep working w/that TheraBite before even thinking of making an appt. with Dr. Yakes! I called Dr. Yakes P.A., Kelly to possibly call me in some steroids to help w/the pain I've been feeling?! I don't know what to try anymore, but I'm always on so many meds, it's a wonder I don't fall asleep @ work! Take Care everyone and we'll keep in touch! Thank you for all your love, prayers and support!

Mark & Cyndi

I'm a Celebrity, Get Me Out of Here!

Hi Family and Friends!

How is everyone? There is so much to write, I don't know where to begin! I'm going to start with the night before we left for Denver! So, Tuesday after work, we got Hanz's tote bag full of his things (food, bowl, snacks, brush, etc.) and headed to Rockport, where Marks brother Jim and his wife Shelley would be taking care of our furry kid! Jim and Shelley treated us to dinner @ HuDat - it was delicious! - then we headed back to their house for a bit. By the time we left (I did good - I didn't cry this time when we left Hanz!) and got home, it was late. Mark lay down for a bit and fell asleep. I stayed up late reading and doing a few things, like changing Sabas clothes. In any case, we should have changed my wound dressing that evening, but I didn't want to wake Mark up and figured we would take care of it in the morning. Well, I got up @ 3:30 am, and started trying to get some packing done. Mark got up and worked on my wound dressing and that really set us back on time! Our flight was to leave @ 6am and we got to the airport @ 5:40am. On the way to the airport, we were remembering things we didn't pack, so when the guy @ the American Airline counter said we had to take the next flight, I figured we could go back home and pack a little better! Back home we went, picked up a few things and back to the airport since this flight left @ 8:30 a.m.! Made that flight that took us to Dallas and then on to Denver! I slept most of the way for several reasons! I love to read, so that makes me drowsy - not to mention not getting but a few hours sleep and then all the meds I take ...! Somewhere down the line, I dropped by book, hitting my soda and knocking it over - oops! We arrive in Denver @ 12:30 p.m. and head to the car rental place. After picking that up, we start heading toward Dr. Reeds Office, as I have an appt. w/him @ 4 p.m. - we figured we would find a place to have lunch in that area of town. Park Meadows Mall is also near Dr. Reeds office, so I knew I would enjoy looking around that area! For those of you that might have forgotten - Dr. Reed is the head of Voice and Swallow in the Denver area, and he checks my airways to make sure there is no new avm growth or any blockage, so that Dr. Yakes can then do surgery the following day. Dr. Reed gave me the "all clear", but we also had talked about the possibility of a tracheotomy. I have a large vein in my neck area that concerns me if I were to need a trache. Dr. Reed feels that as long as it is planned and not done on an emergency basis, then a trache shouldn't be too big a problem. I really do NOT want to go there if @ all possible, so we'll see.

My sister-in-law Shelley had asked me what all we did while we were in Denver, and I told her how we like going to a couple of the grocery stores up there and find items that are no longer available in our stores here! Shelley and her friend Linda laughed when I told them that I was so excited to find Niagara Spray Starch in a pump bottle! I LOVE that stuff and for whatever reason, our HEB Grocery store does not carry it anymore! I loved that it was in a pump, so lately what I had been doing, is pouring some liquid starch and mixing it w/water and putting it in an old pump bottle I still had of the Niagara Spray Starch! So we bought a couple bottles of that, and we had also been looking for boysenberry syrup that was not available here and found that! Mark likes a particular "flavor" of Lipton Onion Soup Mix that is no longer available here, so he picked up some of that - funny, huh ... that we end up grocery shopping up there?! After all that, we finally checked in to the hotel and settled in for the evening! I still had most of my lunch left that I had in a "to go" container, so I had that and Mark wasn't hungry, so we watched TV and both fell asleep a bit later.

I was due to be @ Swedish Medical Center @ 8am, so I got up w/enough time to shower and get my overnight bag ready! After Mark got showered and ready, we headed out - seems every time we go, we pay $100 deductible or something - but we were assured if we overpaid we would be reimbursed. Ok, so we head up to the 3rd floor, where I need to go to get started - get my hospital gown put on, non-skid socks and then nurse Jennifer comes over to get my IV started! See photo. She is so good - gets that IV in on the first try!

Then Eric, Dr. Yakes P.A. comes by, and he has Kelly, Dr. Yakes newest P.A. with him! Kelly and I got along well right away - we were both into the Twilight books, so we enjoyed talking about that! After Eric had me sign forms that were necessary for procedure, he showed me photos of his new baby, Lindsey!

After that, we waited around for the Anesthesiologist to come talk to me, and I wondered if my not being able to open my mouth very wide was going to be a problem. I had a book to read, so I just hung out w/Mark, my book and Saba while we waited. Finally, the anesthesiologist (I believe her name is Quinn) showed up and we started talking about how far I could open my mouth. Quinn wasn't sure she would be able to get that tube in my mouth and she worried that one of my lower front teeth was just a little loose. We decided that she would try her best to get that tube in my mouth, but if she just couldn't, then I wouldn't have a procedure done. So I'm taken to the surgical room, I get moved over to another bed and I hear that I am being given something to put me to sleep through my IV.

Next thing I know, I am awake and I remember being told that an embolization was not done, due to them not being able to get the tube in my mouth as they wanted! Ok. So I'm very groggy and not feeling well, considering I didn't even have a procedure! Nurse Jennifer asked me where Mark was, and I told her I didn't know - so she called Mark on his cell. I was told that I bled from the wounds on my face as they were cleaned. I hear I lost 5 ccs of blood and that must have ended up in my hair - ugh!

Meanwhile, I didn't know until later when Mark told me - but he had gone into Dr. Yakes office to talk to the patient coordinator, Sadie, to give her some information she needed from me. There was a couple from Canada in there w/their daughter Brooke and she was to have her first embolization w/Dr. Yakes the next day! Brooke also has a facial avm like mine - but fortunately hers is not as severe! Brookes mom had been keeping up w/my blog as well as Shalons, so she had recognized Mark from the pictures I post! Mark took time to tell them how great Dr. Yakes is and about my procedures!

So the nurses finally get a hold of Mark, but meantime, while I was sleeping in ambulatory care - I felt someone touch my foot. I woke up to see my favorite recovery room nurse Rick! He was not working (from what I understood) and was in his street clothes. He asked how I was doing and where Mark was. Talked to him a bit - it was nice having him come by!

Mark finds someone to let him in to the area where I'm at and I tell him what is going on. Dr. Yakes comes by to talk to us - Mark had the snacks we had picked up the night before (that I was going to have in the room w/me that night) and offered some to Dr. Yakes! While Dr. Yakes was eating pretzel rods and oatmeal raisin walnut cookies, I asked the nurse for water and maybe some pudding. I had been given morphine, but that was just not cutting it and I was due for some oxychodone and was told I could take it. Dr. Yakes was telling us that he really feels that I should have a tracheotomy. I told him I really didn't want to have that done - I'm just tired of dealing with bleeds, a puffy eye, the wound and dressing on my face - and I didn't want to have to deal w/a trache on top of all that! Luckily I haven't had a bleed (actually, I did have one last Friday & it took an hour to stop it) but I asked Dr. Yakes to hurry up and finish me because I was having to leave my furry kid when I come have a procedure! He understands, because he has 2 standard poodles and a small one too! Dr. Yakes did say, that if I am trached - that I have to be in the hospital for five days! Yikes! They have to make sure once it's done, that all is well and there won't be any problems.

Eric comes by to give me my discharge papers, and tells me that unless I can put the width of two fingers (one on top of the other) in my mouth, then I will need a trache. We had already looked into ordering a Therabite - Eric had suggested that during my last embolization. Sadie had faxed the information needed for us to get that Therabite, but it was going to take a while to get it and run it through the insurance. Later while in the hotel, we had told Celia about that and she took over and ordered the Therabite on line and had it overnighted to me! So, here I am - doing "mouth therapy" w/the Therabite! From past procedures, my jaw area has swollen and I cannot open it as wide as I had before. If I don't do something about this now - later it would continue to get worse and I may not be able to open my mouth @ all! I'm already having a hard time getting food in there and I sure don't want to drink things through a straw!

We have been so blessed to have such amazing families and very supportive friends! This avm business really is hell @ times and there is no way I could do this on my own! I always pray for strength to endure whatever our Lord has in store for me. I give thanks for my husband, that is a lot of the strength that helps me get through the rough times! My brother-in-law Jim and his wife Shelley have really stepped up to help us in so many ways! They are very generous and have made it possible for our trips to be made easier in a couple of ways. It is especially wonderful knowing our baby Hanz is being cared for so well in their home! As I've mentioned before, Jim and Shelley live out in the country, along with their friends Linda and Buddy nearby. Well, Jim and Shelley have 2 indoor dogs and 2 outdoor dogs, and Linda and Buddy have a Yorkie named Hockey and a chocolate lab named Coco! So Hanz was like @ a doggie camp or Chuck E Cheese for dogs! I hear Hanz ran outside with cows and they have horses and pigs nearby! Hanz had a chance to visit with Hockey and Coco and had a great time running all over! Shelley tells us that Hanz missed us - he would go over and stay by the door and sigh. It just breaks my heart leaving our baby behind! I appreciate it so much that Shelley tells me she picked Hanz up, and rocked him and loved him! All the while, she said her dog Emmie was giving her the evil eye!

We were so happy to get home to Corpus - because our flight from Dallas to Corpus had a LOT of turbulence! It was pretty scary - the plane would drop way down where our stomach would do a flip-flop! Mark started praying a rosary and I put down the book I was reading and started praying as well! I remember thinking, "I can't die before finishing my AVM procedures"! We were so relieved when it was over! This was caused by the bad weather in Dallas!

So now ... I will faithfully use the Therabite System (http://www.atosmedical.com/Home/Products/Mouth_Jaw/The_TheraBite_System/) and depending on my progress ... will then determine when I will return to see Dr. Yakes! I'm hoping I don't have any problems w/my avm ... remember we need to always keep ahead of it and not let it get ahead of us! With my not having a procedure this time, it is putting me behind schedule somewhat, so here's hoping this avm doesn't rear it's ugly head and give me any problems!

Thank you all so much for all your love, prayers and support! Ran into a friend and former choir member @ the grocery store today and got a big hug from her. She keeps up w/me through my blog - Hi little Ronnie! It's always great knowing all of you are out there for me - we'll get through this one day at a time! Thank you!

Love,

Cyndi

P.S. Oh! How could I forget? I must post a picture of "Mommies Angel"! My baby Hanz! He is such a wonderful distraction from this horrible avm! I think about him all day long and can't wait to get home to my furry baby Hanz! He is soooo spoiled and we love him so much!

Just call me Puffy!

Hi again my Peeps! How is everyone? Good, I hope! Well, first I want to add a couple more photos from my birthday @ Celia's! The one photo is Mark having poured us all some Asti Spumante for a toast! Then of course he baked me my favorite Italian Cream Cake from scratch! It is sooo awesome! Mark says it would have looked better, but he made it and frosted it while it was still warm, because we were heading out to the island to The Fossums house! This was the first time he used (at my request) some of the "tools" from his cake decorating class and put a swirly trim on top and bottom. Unfortunately, the top swirly rim ended up @ the bottom I think because it didn't help that on the way, the cake kinda slid a bit to the side of the cake holder! Who cares what it looks like, it was delish!

Ok - back to business! Let's see .... I woke up @ 2:30 a.m Monday morning, sat up and felt my neck. I knew something was going on, so I turned the bedside lamp on and woke Mark up. I asked him if I was bleeding or it was just sweat. Nope, it was bleeding alright! Got some blood on the top sheet too - went to the bathroom and took the dressing off, but it had already stopped. Mark had put some surgicel on the area that he felt would be giving us problems and that was what kept that bleed from being worse!

So, both of us were falling asleep @ work Monday, what w/being up late w/the bleed! The next morning, Tuesday - I was getting tired of looking @ my puffy eye! Yeah, it started getting puffy on Saturday and kept getting worse! There went my fun in wearing mascara! So I had Mark take a photo and I sent it to both of Dr. Yakes P.A.'s (Rhonda is still there) and to the patient coordinator, Sadie, as well! Got a call from Eric and he asked me about it and how I was doing! Told him about the two recent bleeds and he asked if my eye was still puffy. Told him that photo had been taken a few hours earlier! See glamour shot! So, he agreed to send me a round of Prednisone (steroids) to bring the swelling down! Life with an avm - I woke up @ 4:30 because Hanz was in bed w/us and I thought he had to go to the bathroom. Well, I ended up just staying up and deciding to blog! When I talked to Eric, he sounded sleepy. I asked if it was because of the new baby and he said yes. Eric and his wife just welcomed a baby girl, Lindsey. I think Eric said 7 lbs. 12 oz.! Ok - gotta get a few minutes sleep before the alarm rings! Just had to show y'all my puffy eye!

Thanks again for being my buds and keeping me in your prayers! Have a great day!

Cyndi

Happy, no matter what!

Hey Friends, Family and/or Prayer Warriors!

As always I want to say how much it means to me to have so many of your prayers! I am very blessed and that is what helps get me through my work days, my procedures, the bleeds - everything I endure! There is always that darned pain! Hmmm... I guess I should start w/the latest news and go backwards? I'll probably jump around and confuse everyone!

At the end of my work day Friday I was soooo happy! I just could not believe another week had gone by and I've got TWO DAYS to spend with Hanz and Mark! (Like Mark says, notice the pecking order)! My baby Hanz is so adorable and unbelievably cute! Such a winning personality! I was showing one of my friends @ the main office Hanz' photo and she could not believe when I told her that he drags that duck that mom gave him for Easter everywhere! Hanz grabs the duck, looks @ me and then starts running around the house with it, so I'll chase him! Most times, he's too quick, so he'll wait for me to almost catch up to him, before he starts running off again! I can only go "round the dining room, through one bedroom and the hall" about 5 times before I just poop out! I tell Hanz, "Mommie is too old for that"!

Oh! Back to my stuff! Well, we were up late Friday night, so I was waking up about 8:30 am on Saturday. Soon as my eyes opened up, my first thought was, that I would go get Hanz and bring him back to bed! My neck felt wet, so when my hand touched that area, I could pretty much tell I would be seeing blood. Yup! So as usual, I go, "Mark, I'm bleeding"! As usual, he goes, "You are kidding"! So we start the drill! I was dripping blood on the way to the bathroom, and I got my dressing off my face and I could see where it was bleeding from. Mark had just pointed out that area the night before when we was changing my dressing - saying that the very same area looked like it would be giving me trouble! Actually, soon as I removed the dressing and put some pressure on the area, it stopped bleeding very soon! Mark cleaned the area and redressed it and we just went about our business! I ran a couple of errands, then came home to spend more time w/my two favorite people! Later that night, I grabbed Hanz and he and I headed off for bed! Mark, I knew would be falling asleep on the couch, which he did. About 1am I heard or felt something, so I turned the bedside lamp on. I saw Hanz was up and looking @ something on the bed. Hanz had thrown up, poor baby! I looked @ it and apparently he had eated some gold threading from one of the cushions near where I had my Build a Bears, Saba and Rulon! Hanz is always wanting to get to Saba, and I'm sure that tassle w/gold threading caught his eye! Hanz is like having a toddler around 24/7! We have to watch him and everything he puts in his mouth! Course we had to change the sheets, but he ended up sleeping w/us that night all the way through for the first time!

Anyway, it's late and I'm gonna wrap this up soon! Here is a photo of the dinner my sister made for us on my birthday, May 1st! She made arroz con pollo (chicken w/rice) and mom made tortillas!

My next trip to Denver will be June 10, 11 and 12th! I need to be doing some exercises to make sure my mouth can open wider or the anesthesiologist is threatening me w/a trach! Yikes! As always, thank you all so much for all your love, support and prayers! Could not do this without you!

Don't forget! If you get a chance, check out my buddy Shalon's blog and website! She always has great stuff on there and she's adorable! You can get to her sites from mine!

Love to all!

Cyndi

Oh! I almost forgot to tell you about something that happened the other day @ work! I had gotten a call from a lady that had been there before w/a defendant. She is his caregiver and being in the medical field, she was interested in learning more about my avm. Her name is Julie Ann - and she came into the office again and surprised me w/a nice gift! She gave me a wooden box that opened up, and inside were a couple of things! One was a silver compact/pillbox and on the cover of that it says, "Being normal is over-rated"! There are also little slips of paper in that box, that Julie Ann says when I meet an obstacle in dealing w/my avm, I should write that on one of the papers and pray about it. She herself put some wooden letters on the cover of that wooden box that say, FAITH BOX and it also has a red heart on the front of that wooden box! Julie says she was so impressed with my great outlook on everything in dealing w/my avm, and she was moved by my blog and all I had written! Wasn't that sweet of her to come by and tell me all this! She is really nice and wants to help me in any way she can! I tell her that is one of the reasons I have this blog - to help people know what someone w/an avm goes through on a daily basis! So that more people can understand what having an avm is all about!

Denver 33

Hello to everyone following us on this avm journey! I have so much to write, so grab a snack and get comfortable! Before we even left on our trip, I had an arterial bleed here @ home @ about 3:00 a.m. Tuesday morning! I had been reading off and on, felt something wet on my neck, and by now you even know the drill! "Mark! Get up! I'm bleeding"! It was going so fast, I barely had time to make it to the bathroom and the blood was wanting to come out the top of the dressing up to my eye! I peeled off the Tegaderm and sure enough - out shoots the blood! Once we can determine where it's bleeding, we just wet a paper towel and put pressure on the area until it stops! Then Mark redresses it and we try and go back to sleep! So, as always, we were needing sleep before one of our trips!

To boot, @ the last minute, we had to change the place that would be taking care of our baby Hanz! We didn't know that my sister Celia would be able to take care of him, then @ the last minute, her mother-in-law had gotten to feeling worse in the hospital, and she knew they would have to be taking off to get back to Houston! So we called Marks brother Jim and his wife Shelley, to please take our Hanz in while we were gone! So, instead of spending the evening packing, we headed out to Rockport to leave Hanz w/Uncle Jim and Aunt Shelley! They really did us a huge favor and took such great care of Hanz - they have 4 dogs of their own! Hanz loves running out on their property, as they live in the country! I only sobbed a little when we were dropping Hanz off - not as bad as I did last time we left him behind!

We didn't get off to the best start either. We didn't pack until the morning of our trip! Rushed to get to the airport and if we heard correctly - the pilots had a late night flight or something, so instead of our flight leaving @ 6:00 a.m., it didn't take off until 6:40 a.m. because they arrived late! So you know what that meant, right? Yup - didn't make our connecting flight - but we were moved to the next flight out.

Luckily, my appt. w/Dr. Reed isn't until 4pm, so we have plenty of time! Actually, Dr. Reeds office called on my cell and asked whether it was possible for me to come in early - @ 2:30 p.m. No problem! Dr. Reed has a new office location in a great part of town that has lots of restaurants and a big mall I like! So we had lunch @ Mimi's Cafe and then took a quick look around the Park Meadows Mall! That is the mall Celia and I had gone to on one trip and we enjoyed going to Borders bookstore! So Mark and I walked in there and I asked the clerk if there was anything "Twilightish" available. She took me to where they had a display set up of different things from the Twilight movie, plus she recommended another book that everyone's talking about called MARKED! Couldn't decide, so I walked out w/out anything. Saw Dr. Reed - got to meet one of his P.A.'s that my bud Shalon calls her twin, because they share the same birthday! Don't ask me what his name was, I just called him Shalons twin! Unfortunately, Dr. Reed is concerned that the avm might grow toward the middle part of my ear, and if that happens, that may require an ear surgeon to replace some of the bones in the inner ear! YIKES! Let's hope that will NOT be the case!

We finally headed to the hotel to check in - I had lots of salad left, so that was going to be my dinner. Mark had brought back some bread and stuff and he wasn't all that hungry, so we were in for the night!

Next morning, we were expected @ Swedish by 7 a.m. to pre-register! So, here is a photo of me w/Melody! She is one of the two receptionist we see every time we go to Swedish! Very nice - she has pets, so we always talk about our furry kids!

Head over to get started w/the IV's and stuff - and of course the first nurse doesn't get it in right away! I told her she was fired (kidding of course), but she got another nurse to give it a go and she got it! Soon after, as usual, it's time to go to the bathroom. On the way back, we saw a basket of magazines on the nurses station counter and were looking through them, when Dr.Yakes came up behind us and put his arm around us! I barely had time to ask him about my ear and didn't get a clear enough answer, but I will get it and share that with you!

I was surprised to see Rick Smith, my favorite post op nurse too! I was under the impression he wasn't going to be working that day! That was a nice surprise!

Back to the hospital bed, where I got comfortable and dozed off, so Mark had to wake me up to talk to the anesthesiologist! We know when they show up, that pretty soon it's showtime! I answered one question and fell right back to sleep! Mark told me to sit up so I could stay awake! A few minutes later, transport comes to get me to take me to the surgical room! Here is a photo of James (transport) and Lori (nurse?) right before I get the happy juice!

Next thing I know, I'm waking up in recovery and all I remember is seeing Rick come by to check on me! I was so sleepy, that I didn't have time to worry too much about pain or getting ice chips! Next thing I knew, my room was ready! I asked where Mark was and was told he was back @ the hotel! He says the nurse said she would call him before they moved me to a room and they never did! Meanwhile, he has my purse and everything I need to get a hold of him - so one of the nurses was nice enough to put in her long distance code so I could call Mark on his cell! We never know how long I'll be, so Mark gets time to either go back to the hotel to nap, or check things out! In the parking lot of the Park Meadows Mall is a traveling Titanic Museum that Mark took a tour of! I was really happy to find I had a private room - brand new! It was large and had a nice shower, so after I was able to get up (had to be in bed a few hours due to angiogram - groin stick) It was so great taking a shower to get all the blood out of my hair! Before all that happened though, Dr. Yakes P.A. Eric showed up to see how I was doing! He asked for Mark, but Mark hadn't made it to my room yet. Eric asked if Rhonda had a chance to talk to me and I said no. He just goes, "oh". I looked @ him and said, "Is she leaving"? Eric admitted that yes, Rhonda would be leaving Swedish @ the end of the month! I had a feeling I knew what part of the reason was, but we won't mention the office politics here. Unfortunately for Eric - he'll have his hands full for a while! He has to be part of the interviewing process, plus by the time the new P.A. is trained, then it takes another while before all the paperwork for the P.A. is processed - so Eric will be on his own for a good while! Poor guy is already stressing because he and his wife are about to have a baby any day now! They already have a 3 year old, plus Eric has a 10 year old stepson!

Mark finally came in, loaded w/all the things I need to have to stay overnight! He changed out my dressing, plus I could see that I was getting some drips from the excess alcohol coming out! If I don't keep dabbing it, it will eventually burn my skin! We thought about this before, but finally did it this time - we weren't sure how much it would help to tape a piece of gauze where it was dripping. We were just afraid the fluid would collect there and then burn a "hole" anyway. No, it actually worked really well! Thanks Mark! He is such a great nurse! He was explaining to the evening nurse Judy about changing the dressing! So, after my shower and dressing change, it was time for dinner! Mark brought in pizza from Ricos across the street from the hospital! One of the techs came by to take my vitals and she says, "you smell good"! I had just gotten out of the shower, but I asked her, ... "so what are you saying? That I stunk earlier"!? She just had to laugh and say no, that's not what she meant!
We settled in to watch Survivor, and soon after that, I crashed out! See photo!

Oh! Here is a photo Mark took as he was out and about in Denver! Weird signs, huh?

Back to hospital business ... we hear that the real Saba is having a baby any day! She is one of the techs that is from Eastern Ethiopia that I named by Build a Bear after! The nurses were telling us how they keep checking the computer to see if Saba has checked in yet to have the baby! Plus, I got a visit from Brett - another favorite nurse! She recently took an Alaskan Cruise where she got married and she is now pregnant! We caught up with her, and then Rosie from Puerto Rico stopped by! She used to work in housekeeping, then studied to be a tech, and is back in school studying to be a nurse! She asked whether I had seen Joanna from Portugal and I said no. So Rosie said that Rhonda Sharp (the one who is jumping ship @ the end of the month!) had told her Joanna looked so great! All of Joanna's procedures are done - she had the debulking done w/Dr. Yakes and that made a big difference! Also, somewhere along the line, one doctor had accidentally damaged a nerve near one of Joanna's eyes, so her face drooped in that area. Fixed! Looks like new! From what we hear, she'll have the rest of her reconstructive surgery in Portugal! Isn't that awesome news? Can't wait until that is ME someday!!!

So, soon after I crashed, Mark went back to the hotel to get some rest! I had already been falling asleep while he was changing my dressing! Course I woke up a couple of times during the night. Eric had mentioned that he would swing by my room about 7:30 a.m. to sign my discharge papers and give me any prescriptions I needed! STEROIDS! See photo. He also mentioned that Anesthesia wasn't too happy that I can't open my mouth up very wide. With the damage that has been done to my inner ear and tissue and stuff, it is hard for me to open my mouth up more than an inch. It takes me a while to eat and it's difficult @ times to not get food all over myself! Eric said there is something that a dentist needs to prescribe (let's see, do I know anyone?) something called Therabite and this should help me exercise my mouth to open it further. My ENT here, Dr. Zane had already told me I should be doing some form of exercises to get this in better shape. Eric said if anesthesia isn't happy w/my progress, they'll have to do a trach and we don't want to complicate things if we don't have to! UGH!!

Here I am with Leah, one of my RN's that took care of me! She was super nice and we enjoyed talking to her! Don't remember whether it was her or Judy that told us one of Dr. Yakes patients came for 94 procedures! It is a 23 year old man that had an avm on his shoulder and upper arm and it was huge! All gone! Wow!!!

Mark walks in to my room the morning of my birthday with my favorite White Chocolate Mocha from Starbucks and the Twilight umbrella I had been eyeing @ Borders! Neat! That was a cool surprise! Soon as we got discharged, we headed out to Park Meadows Mall! Mark had also given me a Borders gift card and we wanted to look around! It just happened to be drizzling, so I got to try out my new umbrella! I had Saba w/me!

So we walked around the mall and saw a Pet store - I hadn't seen a pet store in a mall in forever! Guess what we found? Some Brussels Griffon puppies! Isn't that something? Brussels are pretty rare around here! People comment on that each time we take Hanz to Petsmart! These puppies were like 8-10 weeks old! We asked if we could hold them - it was a brother and sister and we got the little girl to hold! Do you know how much they want for these puppies? $750! Yowza! We got Hanz @ the bargain basement price of $20 and he's a heck of a lot cuter too!

Dropped off my prescription to be filled, then headed to Whole Foods to find some lunch! Took it back to the hotel, ate and repacked and checked out! Drove to return the car rental and took the shuttle to the airport! We had a really good trip! Dr. Yakes used 18 cc's of achohol and I feel pretty good! It's the steroids! I'll be going to work tomorrow for sure!

Before we forget! Got in about 10pm on Friday, my birthday, stayed up late, but got up early to have breakfast w/Jim, Shelley, Linda, her husband Buddy and her brother John that was visiting from out of state! After breakfast, we picked up our baby Hanz! He had been having such a great time, but we really missed him and were sooo happy to finally take him home! Poor Hanz, got home, rested a bit, got bathed and we headed out to the Island to party! To be continued on next blog entry!

Gotta go! Mark just made dinner - stuffed shells, green beans and garlic bread! Yum! No really ... these steroids increase my appetite!

Thank you every one for all love, prayers and support! Could not do this w/out you!

Lots of love!

Mark & Cyndi