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
Sunday, June 28, 2009
Posted by Dulce at 8:56 PM
Sunday, June 14, 2009
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!
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!
Posted by Dulce at 6:48 PM