Denver 35

Greetings Family and Friends!

As always, I like to keep everyone posted on my progress as we fight this avm! I was really looking forward to this trip, I just wanted to see "my people" that understand me completely! So here we go! It never fails, we got on the plane on an hour or two of sleep - we always seem to pack very late and last minute and have a very early flight! We had an empty seat between us from Dallas to CO - so Saba had her own seat! We arrive in CO @ 9:30 a.m. on Wed., Jan. 27 and the weather was nice! The sun was out and it was chilly enough for a light jacket! Picked up the car rental that Mark really enjoyed! It was an Infinity!

We headed toward Park Meadows Mall, as everything we needed to do was in that area! I figured we'd kill a little time @ Borders bookstore, then have lunch @ Mimi's Cafe and then go on to my appt. w/Dr. Hepworth's office in the same area! Luckily we got there early for the appt. because it turns out, our appt. was @ his other office, closer to Swedish Medical Center! At this point, Dr. Hepworth feels he can go in and debulk the mass under my chin without it interfering with what Dr. Yakes feels he still needs to work on some of the avm in my cheek/ear area! So at this point, the doctors are discussing what they will do w/me next! Here are photos of me @ Dr. Hepworths office - he is putting ointment on my scabby area near my ear and inside it as well! The other photo show Dr. Hepworths P.A., Kris Pacheco! She is super nice and we like discussing what books we've just read!

After this appt. we went to Safeway to try and find items we can't get anymore in Corpus - like my favorite spray starch that comes in a spray pump bottle! I also found some face wipes I like to wash my face with that are NOT premoistened, so got some of that! Headed to Whole Foods to pick up something for dinner before going to the hotel and calling it an early night! This was going to be our first stay @ this hotel, as the Four Points Sheraton we always stayed @ was being converted to an assisted living place. This new place was a suite, so it was nice having a refrigerator, microwave, an oven, coffee pot and dishes, glasses, utensils! There are time we aren't too hungry, so this will be convenient to have something like soup if that's all we want! Wouldn't you know that for whatever reason, there was none of my favorite corn chowder soup @ Whole Foods! The bed was very comfortable and we had plenty of pillows, so we got a good nights rest!

I had to be @ Swedish by 7:30 a.m. to pre-register for my procedure, so here I am, next to the car before we leave! Maybe an inch and 1/2 of snow fell the night before! I had dressed Saba in a pink onesie and a denim skirt - but before taking off on this trip, my friend Felice asked me to make sure I made it to the post office before leaving for CO! She had sent me a couple of things for Saba to wear! She knows what an Olympic fanatic I am, so she sent an olympic sweatshirt w/a hood that has little slits for her ears! She also sent a t-shirt that says USA and it has sequins on it! How cool is that?! Thank you Felice! Everyone commented on Saba's sweatshirt!

So, got pre-registered and headed to ambulatory care to get ready for surgery! One of our favorite nurses is no longer in this area, but went on to Maternity Ward, so no more Sue! Our other familiar nurse was there - we call her Boston, as she has a heavy accent, but her name is Mary! Here she is, along w/Dr. Yakes P.A. Kelly! Got a nice surprise visit from another favorite nurse, Rick! He works in recovery, although he wasn't working on this day, but it was great that he stopped by to say hello! One of the anesthesiologist stopped by, Wendy - she said she was thinking of me the night before and worried about intubating me, since she knew I couldn't open my mouth too wide. She was happy to see I had a trache now, so it would be easier and safer for me to be put under! It was finally show time, so I get wheeled to surgery! Got a few minutes to talk to Dr. Yakes. Told him to go easy on me and that I didn't know how much more I could take! He assured me that we were going to beat this avm and we were going to win!

Woke up in recovery and my back was really hurting from laying flat due to Dr. Yakes doing an arteriogram! I normally sleep w/pillows under my knees for support! So I grabbed on to the side rail of the bed and pulled myself on my side and that helped the back pain! Got some morphine and ice chips and I didn't feel as bad as I have in the past! The nurse told me she was having a hard time reaching Mark - that she was getting a recording that it wasn't a working number! She finally tried dialing slower and got through! By this time, it was time for me to get to a room and Mark met me up there! Shortly afterward, Eric, Dr. Yakes other P.A. stopped by to see how I was doing! He always comes by and gives me my prescriptions and dismissal papers, that way, we can leave first thing in the morning!

Had very good help as always - here is a new tech we met named Zufan and she is from Africa! Sweet and helpful! Since Dr. Yakes only used 8 cc's of alcohol, I wasn't too bad off, and he did not work inside my mouth, so as soon as I could sit up, I was drinking juice and having pudding! Just had some blood in my hair - but I was able to take a shower that evening and get it all out and felt better! Mark stayed with me a bit and we watched the Star Trek movie courtesy of Swedish! After Mark left, I dozed off a bit, but woke up @ 3:30 a.m. and I watched The Proposal and then some movie about a dog hotel! Of course I was missing my Hanzie, but we got updates from my brother-in-law Jim about how Hanz was having fun and falling exhausted at bedtime!

Next morning after Mark showed up, we got all our stuff and went to say hello to Sadie, Dr. Yakes Patient Coordinator! She does so much that is neccessary to get my appt. scheduled, so we like to stop by and touch base with her! Also, with Mona, Dr. Yakes office manager! These ladies have to deal with insurance and all sorts of paperwork to get me up there!

Soon as we left the hospital, we headed to Wal-Greens to fill a couple of prescriptions, then to Whole Foods again to get something to eat that we could take on the plane with us! Repacked all our stuff @ the hotel, checked out and headed to the airport! Here is a photo of me probably talking to Mom and telling her we were getting ready for take off!

As always, thank you so much for all your love, prayer and support! Still no telling how many more procedures I have left, but it's got to be done slowly. In May I will be going to see Dr. Yakes for 6 years! Yikes! Our plane was late getting home, as it had to be de-iced in Dallas! It was great to get to the house, but it didn't feel like home until we picked up Hanz the next day from Jim and Shelleys house! It's great to have out little family home together again! Take Care!

Love,

Mark and Cyndi

Trache Change!

Hi Everyone!

How's everybody been? Busy, huh? So much to do and not enough hours in the day, right? Just wanted to write a little bit and tell you about changing my trache out last weekend! I have to change out the entire trache thing once a month! The "collar" that goes around the back of my neck, gets changed out once a week by Mark and I can do the gauze sponge that goes in the front by myself and I do that twice a day! Since I sleep w/a mist cup over the trache area that is attached to a hose going to a humidifier, the gauze sponge up front tends to be wet in the morning. I am so lucky my neighbor and friend Terry Serna lives 2 houses over - she is a respiratory technician and she comes over to change out my trache for me! Glad she did and that we didn't let Mark do it on his own, because we had a little bit of trouble! The skin is closing in around the trache area and when I had ordered a replacement trache from the supply company, we got the wrong size! It was too big and Terry was having a hard time getting it in there! Yikes! Fortunately, we had my original one sanitized and put away in a brand new tupperware container, so we used that! We'll have to see what size they use when I go to CO next week for my procedure! Hopeing all will go well - the insurance is saying I've reached the million dollar mark - so we have to assure them again that there is NO ONE ELSE able to help except Dr. Yakes, so they need to pay him!

I was off work on Monday and ended up having a bad bleed from inside my mouth! Luckily Mark came home for lunch and came in about 5 minutes after the bleed started! It lasted almost an hour! Hopefully Dr. Yakes can put an end to anything like that happening again! You know, when things like that happen - it is so discouraging! My Mom is always telling me how brave I am, as are other people - but I'm really not. I'm angry about all of this @ times - tired of dealing with everything! Seems I'm always having to find a way to cope w/some problem I'm having because of the avm! Now I'm sleeping w/my bed wetting alarm again in case I bleed during the night from my mouth! Gotta make sure it doesn't get in the way of the mist cup though! Plus of course I have drainage coming out my ear and scabbing inside and around it - ugh! I have to work w/the therabite again because I can't open my mouth very wide, but I had gotten away from it from trying to deal w/all the trache stuff! Agh! We look forward to these trips to CO because we know we are in good hands up there! Poor Mark can finally rest knowing Dr. Yakes and the P.A.'s are taking good care of me!

I just have to say that I am so very blessed to have such an awesome husband that takes care of our household while I can't hold up my end of the deal! After a long day @ work, neither of us feels like doing much, but Mark fixes dinner and most times cleans the kitchen too! Plus, Mark makes sure Hanz has everything he needs, from replacing his pads, to getting any meds, haircut, his nails filed! I just make sure Hanz gets lots of love and is fed!

I would also like to add that after having that bleed, some family members stepped up right away offering to donate blood for me! From my brother-in-law Jim Schuman, to my nephew Davis Fossum! I have an incredible support team backing me up!

How is Hanz the Magnificent you ask? Well, Mark had taken Hanz in to the City Vet. and one of the ladies that worked there was telling Mark that she thought Hanz was so special and cute, she just wanted to take him home with her! Oh, Mark told her she'd have a fight on her hands on that one with his wife! My baby! I miss him all day while I'm @ work! We've been having decent weather the past few days, so we have been taking Hanz for a walk! You should see him just strutting - so happy his mommy and daddy are taking him walking! Yesterday, we walked past a lady sitting on her porch and she just had to get up and come pet Hanz! He gets so many compliments on how adorable he is!

Anyway, here are some photos - the one of Mark and I is from New Years Eve and Marks 50th Birthday! My Uncle Luis and Aunt Betty were in town from Nebraska celebrating their 50th wedding anniversary - married the same day and year that Mark was born!

As always, we thank all of you for your prayer, love and support!

Love to everyone!

Mark & Cyndi

Trache Trip-Part 4

Hello once again!

Got my second wind @ 2:00 a.m., so I decided I would finish the trache trip story! I'm going to include a photo of the respiratory tech. that came to explain a few things I needed to know now that I had a trache, and photos of us arriving @ the airport in Corpus Christi, TX - home!

The hospital sent me home with a machine that I might need to use to suction my trache to get it clean. We were given a demonstration on it - and when I say we, it was Mom, Celia and I. Well, Mark would be the one needing the instruction, but he was already home. We eventually got a repeat of those instructions from a home health care respiratory tech. - and a respiratory tech. from where I ordered more supplies. The best part of this whole thing, is that a very dear friend of ours that lives 2 houses over, is a respiratory technician! We stopped @ her house on the way home from the airport to make sure everything was ok as far as my trache was concerned!

Speaking of the airport, I was so happy to see our family came to welcome us home! My moms husband Vicente, Celia's husband Greg and their oldest son Mark and their dachshund Penny! Of course my Mark and our baby Hanz! You know what? I think I'm saving this for tomorrow, so that Mark can download some recent photos he took of our neighbor Terry changing out my entire trache collar!

Hi again!

It's several days after I wrote the above, and I plan on finishing up the saga of the trache trip! On Thursday, it will be a couple of weeks that I had the entire trache changed out! As I mentioned above - our friend/neighbor Terry is a respiratory tech., and a real angel about helping in any way she can! See photos of Terry changing out my trache! I asked her if it would hurt and she said no, but that I might feel some pressure. I barely felt anything @ all! I was really happy about that!

Not sure if I mentioned that @ night, I sleep with a mist cup over my trache that is attatched to a long, blue hose that leads to a big humidifier that sounds like a compressor! Before I put that mist cup on, the little red cap (Decannulation Plug) comes off my trache, so the mist is able to go in! The other day I coughed a bit hard, and that little red cap flew off my trache and under the bed! Mark had to get it, as I can't bend over, or I may have a bleed! Right after he handed it to me and I cleaned it off and replaced it - I had to clear my throat, and that darned little cap flew off again! This time we looked all over for it, when Mark said, "I sure hope Hanz doesn't have it in his mouth"! We both looked over @ Hanz, who seemed to be chewing on something! Upon closer investigation, he was chewing on a little red cap! Yikes! It's a good thing we had kept and disinfected the trache that Terry had removed, so I got the red plug off of that one! I called my trache supply people the following day to ask for an extra one, which I am so glad they had! I was afraid something might happen again during the Christmas holiday and I wouldn't have a replacement!

I think this is quite enough adventures of the trache trip, don't you think? I want to go relax a bit and watch my Soap and/or talk to Mark and play with Hanz! In case some of you don't know - if you click on the photos, it will enlarge it! At this point, my next appt. for an embolization is set up for Jan. 27,28 and 29th I believe! I can't wait - I enjoy seeing everyone up there! Although I'll be so happy when this nightmare is over one day - it's going to be hard saying goodbye to the wonderful doctors, P.A.'s and nurses that have been so amazing in careing for me!

Thank you all for your wonderful support through this very difficult time! We appreciate all of you very much! God Bless!

Mark & Cyndi Schuman

Trache Trip-Part 3

Hi Everybody!

I decided to go ahead and blog a bit more and include more photos from the last trip we made to Denver! I just want y'all to get an idea of what these trips are really like for us and why all your prayer help us so much!

I'm still hearing bits and pieces of what went on during this trip, as I was under a couple of days, so I lost track of time! Seems Dr. Yakes did the embolization first and once they noticed the swelling, it was decided a trache was neccessary. I was "kept under" and not allowed to wake up from the time I had the embolization until after the trache was done. The doctors didn't want me to be uncomfortable having the tubes in my mouth for a long time I guess.

Once I was able to finally sit up in a chair, Mark said I was a big pain in the butty butt butt! (My nephew Mark used to laugh when my mom would tell him she was going to spank him in his butty butt butt if he was a bad boy). Apparently I was a bit crazier than usual w/all the meds I was under and I was not being very cooperative. I can't imagine anyone w/a hole in their neck that had been starved for five days and had blood in their hair from the procedure would be alot of fun, do you? Poor Mark - he does tolerate a lot from me - he is a saint! Mom and Mark did their best to "wash" my hair while I sat up in a chair. They wanted to get the blood out of my hair and get me to feeling better. I also had to wear a type of "support stockings" to make sure I didn't get a clot in my legs from laying in bed all that time.

You'll see a photo of Mom and I - doesn't she look great? It was a great help having her there! She said all her brothers and sisters called asking about how I was doing! I know Marks family was calling as well! In one photo you'll see a nurse feeding me ice chips (yum! - Not!) and in another the nurse is cleaning my trache tube.

Mark had read in the paper where a statue of Our Lady of Fatima was touring different churches, so he and Mom went to the church - so here are photos of them there!

It snowed (9 inches) the whole week I was there, so I'll include some of those photos! Mom was delighted to see the snow! We don't get much of that in S. Texas! There is a photo of Mark outside @ Whole Foods Mart and that's him in our rental car!

I wish I could have been out in the snow! I was so happy when it was finally time for me to leave the hospital! I had to stay @ Swedish a week to make sure my trache would be healing properly! After not having food for 5 days, I finally got some "blue" applesauce - as they needed to make sure the food was going to the right place after having the trache! What an experience this has all been! Definitely the hardest thing I've ever gone through. We always tell people that when Mark and I said "I do", we sure didn't know it would get this bad! I'm aware that people go through worse - but this has been no picnic that's for sure! Mark has been incredible through it all - he could have walked away from me, but instead, he had loved me through these very hard times! His faith, strength and love help keep me going!

As always, please do keep the prayers coming in our direction! I feel we are getting close to the end! If Dr. Hepworth (ENT) was wanting to "debulk" under my chin area already, then the fear of massive bleeding must almost be behind me! I've recently heard how several of Dr. Yakes patients have finished their procedures successfully! How awesome is that?! Hopefully that will be me soon!

Take care, God Bless and love to all of you!

Cyndi

Merry Christmas!

Good Morning Everyone! For all of you following my blog, I just want to wish everyone a very special holiday! We have had fun and are so blessed in so many ways! I don't think I ever got a chance to show you what an elegant table my sister Celia set for Thanksgiving! I told her to take it easy, but she wanted to use her fine china and her mother-in-laws silverware. We all make very special dishes to add to the holiday meal! How blessed are we that we ended up with three turkeys? Greg smoked one, Celia roasted another one and Mom brought a roasted one too! I'll post our Christmas photos soon - Celia is making a turduckan (sp?) and her Mark is making that delicious veggie bake we all love so much! It's like an elaborate green bean casserole! My Mark is making a spiral glazed ham with all the fixin's! For me, it isn't Christmas w/out a ham that has brown sugar glaze, pineapples, cherries and cloves! Plus, Mark is making fresh cranberry relish we all love and of course the much requested walnut horn cookies!

Gotta finish up a few things before we head out to Celia's for our big Christmas meal! Happy Holidays to everyone! We love you and I will blog soon on part 3 of the Trache Trip! Have a safe, Happy New Year!

Cyndi

I am posting a photo of the elegant table Celia set for Thanksgiving and our two hosts for the day, Greg and Celia Fossum!

Christmas Cards!

Merry Christmas Everyone!

Would you believe I'm just starting to write out Christmas Cards? Please accept our appologies if you don't receive a card from us! Our computer crashed not too long ago and there went all our addresses! Most of them anyway! Still need to shower and iron my clothes for work tomorrow!
Merry Christmas everyone! I will blog again very soon!
Love,
Mark & Cyndi
P.S. Not sure how this will turn out - but I scanned the photo we have of Hanz with Santa @ Petsmart!

Got A New Neck? Part 2 of Trache Trip

Greetings again to everyone! Are you ready for the holidays? I need to really kick it in gear - right now the only people that have a gift are mom, Hula (Mark Fossums dog,) and Penny - my sister Celia's weenie dog!

So the reason I've titled this "Got A New Neck" is when Davis was a little boy (maybe 4 or 5?) - the receptionist @ his dad's office was wearing one of those foam neck support braces, as she had a disc or two removed (?). Davis went up to her and asked, "Got a new neck"? Since the first time I met Dr. Reed, he told me that I may need a trache and I had really hoped to avoid that from happening! I have really been blessed so far, that it wasn't until very recently that I ended up having to have a trache. I know one of Dr. Yakes patients needed a trache from the beginning of her procedure and had to deal w/it until the very end of all her procedures! That was Joanna from Portugal, as her artero malformation was on both sides of her face!

When we went to CO for this procedure, Dr. Hepworth (ENT) was going to try and intubate me w/the smallest tube he had. We knew there was the possibility of my needing a trache, but had really hoped to avoid it if possible!

Well, I report to Swedish @ my appt. time, and get all prepped for surgery. Got a chance to see Dr. Yakes before my embolization - see photo, and I believe I visited with both Kelly and Eric, Dr. Yakes P.A.'s! Normally, after an embolization, I wake up in Recovery - a very well lit room with a lot of activity going on and usually right away a nurse will check in on me and start trying to wake me up from the anesthesia.

This time when I woke up, I was in a dark room (I didn't know I was in ICU) I had a mouth full of tubes - it was only 2 (a feeding tube and breathing tube), but when you can't open your mouth very wide, it feels like a lot of tubes! My arms were tied down - I know it's for the patients own good - they don't want you to pull those tubes out! I remember trying to cough, but I couldn't hear or feel anything coming out of my mouth! The only thing I can relate it to is hearing my brother-in-law Greg's brother - Astronaut Mike Fossum - talk about being in outer space! Like being out in the pitch blackness with nothing to "grasp" on to. I kept thinking, "why hasn't Mark come to see me"? "What time is it, what day is it"? Where is a nurse to tell me what is going on? It would have been so easy to panic and start pulling at the restraints... but I decided to start praying instead. Oh I knew that I was not alone and kept my sanity by praying lots of Hail Mary's and Our Fathers! I am going into alot of detail, so that all of you can know what I'm going through and how much all your prayer help me get through an extremely bad situation! Of course to add to all the fun I was already having - I had a catheter (sp?)! I was in and out of consciousness and I had no concept of time. Without my glasses, I couldn't see the clock on the wall - I would hear the nurses say what time it was once in a while, but never heard whether it was a.m. or p.m.! I heard I was in CCU and then after that, finally put in a regular room!

Dr. Yakes had started working under my chin - on the mass of avm. Well, the swelling went inward, therefore the doctors ended up having to do a trache. See photos of what I looked like when I got out of ICU! Celia was upset to see them, but you know, it's part of the process and what my life is about these days! Dr. Hepworth got rid of some of the big vein I had going down the front of my neck! He said he would get more of that next time! One photo is of me after just having the embolization. The next one is after having the trache!

When I was finally able to speak and figure out what was going on around me - my first thought was - Hanz! My baby was being taken care of by my brother-in-law Jim and his wife Shelley, but I didn't want Hanz to think his mommy and daddy abandoned him! Mark had asked me if I wanted him to call Mom or Celia to fly in to Colorado and I said yes! That way, he could go home, get back to work and pick up Hanz! Mark was with me in CO for a week, so he really needed to get back to our house! Celia was @ a dental conference in Las Vegas with her husband Greg and their office staff and other dentists that are personal friends. Celia had Mom flown in to CO and Mark picked her up @ the airport. Celia flew in a day or so later and Mark was finally able to go home!

Meanwhile, as I'm recovering, I've realized that I haven't heard the nurses mention decadron (sp?)! I know from past procedures (at least 33) that the nurses inject the steroid into my IV to help w/the swelling! So I asked the nurse about it and she said there were no orders for that medication on my chart! At this point, I can't really talk, so I'm having to write down what I want to say, and being under so many meds, is't helping my handwriting to be understood! I was not on one of the regular floors that I'm usually on and the nurse was just not familiar w/the routine! I tell her I have to have the decadron and she says she will try and reach Dr. Yakes, as now it is after hours. The nurse comes in later saying she reached a doctor that sometimes takes Dr. Yakes calls and after telling him the situation - are you ready for this? - he said something to the effect of - it's just another 12 hours - I guess he meant before Dr. Yakes would be back in the office. I'm thinking, "THOSE ARE MY 12 HOURS"! Each second counts for me, you know? I was not accepting that as an answer, so I told the nurse to try and reach Eric or Kelly. She comes back with the answer that neither is available because it's after office hours! I'm getting pretty angry now, you know? I write her a note to tell her to call my husband Mark and I guaranteed he would reach one of the P.A.'s! Mark was able to reach Kelly and this is what had happened. Apparently my embolization was done first and there were orders for the meds I needed for that. Then a day later when I had the trache - there were new orders written for what I needed done for that! So, out went the orders for decadron that reduce the swelling after my embolization! Finally all that was straightened out - but it was ridiculous that I'm the one that noticed I was not being given the meds I needed! I don't even remember when Dr. Yakes and Kelly came by to see me! Don't I look like I'm telling Dr. Yakes in the one photo, "Why did you do this to me"?!

Ok, this is enough blogging for tonight! I'm sleepy, so I guess this will actually be a 4 part series! I've got lots of photos to share and lots of details from our big adventure! I'll blog again real soon!

Cyndi