I've been wanting to blog - Mark is in the garage and I'm trying to watch some of the ELLEN shows I have on the dvr and putting away some of Saba's clothes that are all over the place when I change her in a rush - all the while making sure Hanz doesn't get in to trouble! What kind of trouble? Oh, his favorite - going into our bedroom and walking off w/some of my socks and Crocs! He's already had his bath today, as he will be going w/us to Rockport on Sunday to see Uncle Jim and Aunt Shelley! Hanz will be staying to visit w/his cousins Ripley, Emee, Betsy and Katy while we are in CO! We won't leave him out there until Tuesday night, but we want to make sure and get him acquainted first! It's breaking my heart to think of leaving my baby for several days, but he'll probably have a blast out there! Jim and Shelley live on a big piece of property out in the country and their friends Linda and Buddy also have pets! They have a yorkie named Hockey and all of them are dog lovers, so Hanz will be very well taken care of! Sniff, sniff, waaaah!
Ok! Back to the reason I'm blogging! Went to see Dr. Zane on Thursday, and Mark came with me - I've been wanting him to see how awesome Dr. Zane really is and what excellent work he does! I'm posting lots of photos of our office visit, so get ready for that! Dr. Zane is so personable! He saw I was reading the book "The Kite Runner" and said he had read and enjoyed it as well! Also browsed through the photos I had with me of our little angel Hanz, since Dr. Zane's family has several Brussels of their own! Isn't that awesome? The Brussels he and his wife have looks like such a little princess!
So! The tech told Mark she was happy to meet him, as I talk about him all the time! Dr. Zane took a look inside my ear and was happy w/the healing process since the last time I had seen him! Still had to get some of the scabbing and old, dead tissue out of there - the look on my face in one photo tells you how painful that was! Mark took photos of the screen we were seeing everything Dr. Zane was doing on!
Dr. Zane has these tools to scrape the scab and tissue and to snip it if he doesn't want to pull any further! At one point of course, there had to be bleeding! Right away, Dr. Zane gets a Q-tip and puts pressure on the bleeding area! He also puts a cotton ball in my ear, so that the blood won't go inside my ear. He checks to see if it's still bleeding, and of course it is, so he gets another Q-tip and puts some more pressure on there. Can you say, "PAIN"?! Ugh! This is no fun at all! At one point when he was pulling on a scab I had to yell out, "OUCH"! Seems like I was holding my breath the entire time Dr. Zane was debriding my inner ear! Dr. Zane cauterized the area where I was bleeding from - yikes! That burned, whew! I just have to say how impressed I have been with Dr. Zane! He is in complete control of the situation and my having an avm and a bleed have not been a problem @ all for him! His confidence puts my mind @ ease, knowing that he is doing as much as he can to make sure I heal in the best possible way! I wanted Mark to go with me, as it's kind of hard to explain what all I go through during one of my office visits with Dr. Zane! I wanted to especially share this with all of you - this is why your prayers help me so much! This is not easy @ all! There is so much discomfort going on with my ear - it drains, it's scabbed on the inside and out, and of course painful! My appt. was @ 1:00 pm and I was not pain free until about 4:30pm! Got back to work by 2:00 pm and had a rough afternoon! My co-worker Kathy left for the day as soon as I returned, and I had ten defendants show up that I had to tend to! I was just so anxious to call it a day come 5pm, so I could relax and know that it was finally the weekend! I rushed home so I could go on the walk with Mark and Hanz since my knee had felt well all day! It wasn't until I was talking to my mom @ about 6:45pm that I realized I had forgotten my pain management appt. I had @ 5:30 pm! Mom had asked how my appts. went and I gasped when I realized I had completely zoned out that doctors appt. I had @ 5:30pm! I've since rescheduled it to Tuesday afternoon - the day before we leave for Denver! I have just enough pain meds to get through until that appt.! I also have a wound care appt. the same day I go back to work after my upcoming embolization!
I called Shalon a few minutes ago, as I boo booed and put one photo twice on this blog and I don't know how to remove it! Shalon is my blog creator/maintainer! I want to thank so many of you that tell me how much you enjoy reading my blog! I'm hoping to hear from Wendy soon after her embolization last week! She makes the trip from Canada to see Dr. Yakes! Her avm affects her upper lip and pallet!
I am soooo ready for this avm business to be overwith! It has been very overwhelming and I do have these little break downs @ times! Our original plan had been for Celia to go with me on this next trip to Denver. Unfortunately, since her mother-in-law Pat has been in ICU in Houston the last week or so, Celia is much needed there for her husband Greg and their family. I'm very happy that Mark is going with me - especially since I am still having bleeds - I think I mentioned before that Mark handles these situations very well and that eases my stress! At least I won't be missing Mark AND Hanz - this way, I'll only be missing my furry kid while in Denver! My co-worker Kathy said to me the other day, "It's just a dog"! Excuse me? I know what she is trying to say .. but first of all, a Brussels is never "just a dog"! Secondly, he is the newest member of our family - and I mean entire family! Hanz goes with us to Grandmas - there is no way I'm leaving him home alone while we're on a family visit or occasion! Lastly, Mark and I are completely in love with Hanz and are having a blast taking him for walks and just enjoying everything about him! Ok, ok ... I know, enough gushing about the little prince!
I don't think I'll blog until after our return from this upcoming embolization! Both Shalon and I will be @ Swedish @ the same time, so wish us luck! We hope to get some great photos of the two of us! Please do keep up w/Shalons website and blog - she always has interesting things to say and great photos! You can get to her site from mine! It's always great seeing her - not sure who her travel partner is this time!
Thank you so much for keeping up with us and all your love and prayers!
Mark & Cyndi
P.S. Remember I told you about the MRI I had done last Friday afternoon? Well, turns out I have a torn meniscus! Geez, when will the fun ever end?! I suppose I'll have to squeeze that in between embolizations! Plus we can't forget the physical therapy I'll have to juggle between work and wound care therapy! I'll keep you updated!
Saturday, February 28, 2009
Posted by Dulce at 11:36 AM
Tuesday, February 24, 2009
Hi Family and Friends! How is everyone? We're ok! I just felt like writing down a few things and sharing them with you! Sometimes this avm business is just overwhelming and I get what I call "the weepies", where I just have to cry! I felt that way on Sunday morning - I thought I had it together, but found myself crying during Mass. Just tired of having bleeds and trying to get off pain meds so I can have a drink and I want to live a "normal life" already! I cried thinking that one of these Colorado trips that both Mark and I will have to go - we'll be leaving little Hanz behind! I'm his mommy and I don't want him to think we abandoned him! Waaaaah!
I'm better now though, and I got a call from Christina - patient coordinater for Dr. Yakes. She wanted to confirm my appt. for next week. Christina asked if I was ok, she said I sounded down. I was just hesitant because of what all has been going on! Between my weepies and then Celia has been in Houston helping w/her mother-in-law that has been in ICU for a week! Celia is scheduled to go w/me to CO, poor thing! So I was telling Christina all that and she said if I ever need someone to talk to, to call them! She said that is what they are there for! Isn't that awesome? I did have a situation not long ago, that I called Rhonda Sharp, Dr. Yakes P.A. - and she was extremely helpful and made me feel so much better! At the time she said she would talk me off a ledge anytime!
While I'm on the subject of people helping me feel better - I must include a photo I "borrowed" from another avmer's web site! It's a good photo of my very favorite recovery room nurse Rick! He is the person I want to see when I open my eyes after an embolization! I know I'm in very good hands if Rick is on duty! He changes my bloody hospital gown, the pad on the bed, makes sure my very dry lips get some vaseline and is right there asking me if I need anything for pain! My answer is always YES! Rick is the first nurse I had in recovery that made me feel as comfortable as possible! One time I thought I might have to spend the night in recovery and it was getting late, so Rick ordered dinner for me! I didn't know the hospital would bring you dinner in recovery! Rick is just a super, fun person - just the kind of person you would want to have on duty if you were a patient in recovery @ Swedish Medical Center! He was training another nurse when I was there in January - so I hope the young man paid attention to Rick so he can help another patient as well as Rick does!
So here is a photo of Rick and of course I'll include a photo of my little angel, Hanz! I'll blog again after my appt. w/Dr. Zane on Thursday!
Oh! I can't forget one of my best buds, Felice, is so great about sending me a card or a nice e-mail to cheer me up! My friend Patty does the same! I really have so many of you supporting me w/your prayers and kindness - this is what helps me get through the "weepies"! Thank you everyone!
Lots of Love to all!!
Posted by Dulce at 5:41 PM
Monday, February 23, 2009
Hi Everyone! Here I am again! I had my usual wound care appt. today and this time Mark was able to come with me, as he had taken the day off work to get a few things done around the house! It's always comforting to me having Mark with me, and it's important to keep him up on the latest the doctor has to say about my wound care progress! Since I've been going to wound care and chatting about these folks, I thought it would be nice to show you what they look like! So here goes! The first photo is of Eric - he is usually the one that takes my vital signs when I arrive and am put in a room! Eric is very easy to talk to and a nice guy!
After Eric takes my blood pressure and temperature, it's time for Noel to come in and start removing my dressing! Noel is my favorite RN - he is very knowledgeable regarding wound care! Noel and Mark got into a conversation about the Phillipines (where Noel is from) because of something that had been on the Discover Channel or National Geographic Chanel - ugh! Anyway, here is a photo of Noel working on me! Ok, I'll throw in another photo of Noel and I just for good measure!
Of course I have to include photos of Dr. Larkin! She is the one that tells me I'm aging her when I have a bleed during wound care! Dr. Larkin wanted to make sure I told you that had she known she was being photographed, then she would have done something w/her hair! Everyone @ Spohn Wound Care has been awesome and very professional! Dr. Larkin said the lower of my two wounds had basically healed - but the wound that is higher up, is the one I had a bleed on Friday from. Wish that area would heal closed soon so I could be through w/the bleeding!
Ok! I may update this a bit tomorrow - for now, Mark has to put some ointment on my ear before both of us fall asleep! We're trying to make it as far as watching Headlines on Jay Leno!
Thank you all for your love and support!
Posted by Dulce at 10:12 PM
Saturday, February 21, 2009
Unfortunately, I'm blogging to report another bleed! Ugh! This happened during lunch on Friday. I was having lunch w/Mark and my co-worker and friend Diana, when I felt something on my neck! Mark and Diana had been talking and I asked, "Am I bleeding"? They both jumped quickly because the blood was coming fast! I grabbed some napkins and headed to the restroom, while Mark ran out to the car to get my wound care bag! I had to peel the dressing off my face, all the while trying to keep the blood from getting everywhere! I had gone to the ladies room and Mark of course had to go in there to help me! A little bit later we hear a knock on the door - a lady wanted to use the facilities, but Mark told her his wife was having a problem in there right now. We tried to put some surgicel on there, but the blood was just streaming out and we needed to keep putting pressure on there some more! Finally, it seemed like the bleeding had stopped, so we were able to put the surgicel on the area it had been bleeding from! For a split second I considered taking the rest of the afternoon off work, but once we got everything under control, I decided I may as well finish the work day off! Had to clean up the floor a bit - got some blood on my tennis shoes and my t-shirt, but no big deal. My t-shirt was black, so the blood wasn't noticable. So glad Mark was w/me - it was a little tough to get that bleed under control!
I was just looking @ the clock once I was back to work, looking for it to be five o'clock! I wanted to go home and put my jammies on and get comfy w/my little Hanz! I had an appt. right after work to have an MRI done on my left knee, since it's been hurting! Luckily, the radiology place is only a few blocks from our house and I just had to take my tennis shoes off for the procedure! I guess I'll know the results some time next week. I'm thinking those darned Crocs I love(d) to wear ruined my feet! They have no arch support and I need that bad! So, I'm back to wearing my tennis shoes all the time!
I just got back from running a few errands - I was @ Wal-mart looking @ in the pharmacy area, when I felt a hand on my shoulder. I turned expecting to see someone I knew, but no. It was an old lady that asked, "Did you get burned"? So I had to explain the whole avm thing. She didn't say much afterwards. I really DO NOT like to be approached like that. At least there are times after an experience like that the person will say something like, "well we'll keep you in our prayers" or "Ill pray for you". I just wish everyone would keep their curiosity in check!
Well, got lots to do around the house! Here is an old photo that Celia found - I'm guessing we're in our early 20's! Funny, huh?
Love to all!
Posted by Dulce at 1:09 PM
Sunday, February 15, 2009
Good Morning Everyone!
How are you? Unfortunately, I had a minor bleed in the very early hours of the morning! Mark had worked a 13 hour day yesterday, came home and changed out my dressing. Everything was fine, we went to sleep late - but apparently, it was just one of those spontaneous bleeds! I seem to always feel the blood on my neck before it reaches my moisture sensor! It was coming from the top area of the wound on my face. So off the dressing comes and got pressure on there, and then got some surgicel to make sure the bleeding stopped! Had to clean myself up, take the pillowcase off my pillow and soak that, my nightgown and the towel I used to clean myself up! Sigh. Mark then redressed the wound and off to bed again!
That totally throws our morning off - the only reason I got up @ 9:00 a.m., was because I didn't want to get further behind on my schedule of meds! I wonder if Dr. Larkin (wound care doctor) will read this entry. She does check in on my blog - she says my bleeds (when they occur in her office) are aging her!
Which reminds me - on Friday, I had a little setback on my emotional well being because of my avm. I was having lunch w/Mark and it's hard for me to eat, as I can only open my mouth so far right now. I remembered Dr. Zane ( ENT ) mentioned something about my having a hard time opening my mouth and I had told him that was happening already. I couldn't remember all he told me, so I put a call in to his office to get some answers. I was fearing the worst and thought the only remedy would be breaking my jaw and resetting it - yikes! Dr. Zane's office has an automated menu where you can leave your message and someone will get back to you. I was lucky enough to get a live person ( I think it might have been the office manager) and she listened to my concerns and said she or Dr. Zane would get back to me!
A little later my cell phone rings and it's Dr. Zane! He explained everything to me all over again and eased my concerns! He assured me my jaw would not have to be broken and reset. I should be back to "normal" in time! We talked about our pets, as we both have Brussels - his family has several! wow! That would be my dream! I can't imagine ever having any other type of dog now! Anyway - I just have to say how incredible I think Dr. Zane is! If you are in search of an ENT in the Corpus Christi area - he's your guy! Very knowledgeable - up on the latest and great rapport with his patients! Thank you Dr. Zane! He reads my blog, so I want to emphasize how awesome he is! His staff is great too! I'll see y'all on the 26th!
Thanks to all for your continued support!
Posted by Dulce at 10:14 AM
Wednesday, February 11, 2009
Hi! Here I am again so soon after I just blogged! I just wanted to go over my experience yesterday with you!
Went to wound care and Dr. Larkin started removing my dressing. She got to where the dressing was stuck on my skin and decided to ask Noel to come in for back up. Noel ended up taking the rest of the dressing off and then started cleaning up the wound. I had told Noel about how Dr. Zane had to cauterize the one area in my ear - and sure enough, when Noel was cleaning that same area .... it started bleeding! Right away I felt that blood go in my ear! Noel ended up having to put some pressure on the inside of my ear where the bleeding was coming from right inside my ear - ouch! Then Noel had to get some surgicel and put it on my ear to make sure that bleeding stopped! Gosh I'm tired of having these bleeds! I was @ wound care several hours before being able to get back to work! One of my co-workers noticed that I had blood on the back of my polo shirt - so I pulled out the extra shirt I carry in my tote bag and changed. That was my day! I just can't imagine the day all of this will be over with! I want this wound to heal already!
Wish me luck - I have wound care again tomorrow! Dr. Larkin said as long as I don't have a fever and continue to look well, then we can just do the wound care once a week! She knows that Mark takes great care of me and is excellent @ wound care, so she trusts we'll be going in the right direction! At least w/Dr. Larkin and Noel debriding my wound once a week, we should be in good shape!
Today is Wednesday and I went to wound care today w/absolutely NO BLEEDS! Noel removed the dressing, cleaned the area a bit and redressed it! Voila! Dr. Larkin was there and told me how the wound had already gotten smaller by reading me the first measurements she took of my wound when I first started and the size it is today! Mom had picked me up @ work and drove me to wound care, so I'm glad she was there to hear the good news! Here's hoping that this darned wound will close up soon! Dr. Larkin again commented on what a great job Mark had been doing w/the wound care all this time! Mark has been very patient with this patient! Right now Mark and Hanz are off for a walk - I've got a bum knee right now that isn't allowing me to tag along, darn!
Love to all!
Posted by Dulce at 10:14 PM
Sunday, February 8, 2009
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!
Posted by Dulce at 7:56 PM