Hi to All!
I just wanted to take some time to give you an update and add a few things here and there about our recent trip! I start remembering more as I feel better! Once the "shock" of the entire incident has passed and my pain is under control .... I just wanted to let all of you know that I'm really doing great!
It never seems to fail, that right before one of these trips, I always seem to only get anywhere from 1 - 3 hours sleep the night before! Soon as Celia and I boarded the plane from Dallas to Denver, I was giving in to the sleep I was deprived of! Course I ended up in middle seat, Celia was in the isle seat, and there was a middle aged man on my right @ the window seat. As I drifted off, I kept leaning toward the right, and Celia would pull me back upright from my t-shirt! Course I'm sure it didn't help any that I was snoring! Celia says she finally slipped the man a note that said, "Please excuse my sister - she is heavily medicated and on her way to have a medical procedure @ a Denver hospital". She said he just smiled and nodded - poor man, what could he do? I asked Celia why she didn't swap places w/me, but she was afraid I would lean over toward the isle or be bumped by people on the left side of my face. True.
Once I was placed in a room after the procedure - I remember the nurses looking for the little "cap" that goes over my trache. When I was having a "hard time breathing", we had called Dr. Hepworth (thank goodness first time I met him he gave me his cell #!) and he suggested removing it would help my breathing process. Well that's good, because no one seemed to know where that darned little cap was anyway! The nurses were asking Celia - how would she know? So, I was given a new "cap" to put back on when needed, and my original trache cap was found, so now I have an extra! Works for me! I have had a HECK of a time trying to find the right size trache - the part that goes in my neck, not the collar that goes around the back of my neck. I expressed my concern to Dr. Hepworth and he misunderstood @ first and gave me like 20 of the collar strips that go around the back of my neck that hold my trache in place! Eventually though, I think I found out during my procedure, I was given a brand new trache, PLUS, Dr. Hepworth gave me 2 brand new ones too! Very cool! Now we can swap them out and clean them. The Respiratory Tech had told me to replace the back collar once a week, but the part that goes inside my neck once a month. Dr. Hepworth would rather I replace the whole thing once a week - @ the most two weeks. Just some of the fun things that take up our time around here, you know? Mark of course has been an awesome Wound Care Therapist/Tech/Nurse!
I do have to remember NOT to over do! I start feeling better, and expect to be "back to my old self", but no way! I need my rest and there is SO MUCH to do to keep things going! We had asked Dr. Hepworth if I had to work w/the Therabite the rest of my life and he said no! I meant to elaborate on the conference Celia and I had with Hepworth and Yakes! Celia and I were glad to see that both doctors were in complete agreement with what the next step would be! Dr. Yakes is very soft spoken and has a wonderful bedside manner - they both do really! Dr. Hepworth is so confident and enthusiastic that you just get drawn in and excited about how he is feeling! When our meeting was over, Dr. Yakes gave me a big hug and kiss on the cheek! Dr. Hepworth had a big hug for me as well - these men are so awesome!
Did I tell you how delicious food is on steroids? YOWZA! I'm just happy that I am now capable of a dry cough and to swallow! A couple of lifes luxuries that we take for granted! I just got up not too long ago and I'm thinking of heading back to bed again! Get all comfy w/my book, update my meds and relax! Was this what I did? Nope! A co-worker had wanted to get together to go to some hobby stores and get what we need to learn how to knit! Actully, Mom had told me she had a ton of yarn, and my friend already had the patterns, so all I needed was the needles! Can't wait - we'll work on that after we eat our lunch on Monday!
Oh! I found a couple other views of some photos from the trip - just to fill in a little of the gap! Thanks for listening! All of you are such a big part of my life and we appreciate you so much!
Saturday, March 20, 2010
Posted by Dulce at 4:01 PM
Wednesday, March 17, 2010
Here I am again! Ready for Part II? Originally, my scheduled time to report to Swedish on Thursday morning was 11:00 a.m. - luckily, there must have been a cancellation, because Sadie let me know that now I was to report in @ 7:30 a.m.! The earlier the better! Usually the kids or elderly and diabetics get put in first, but the later I get in, the harder it is to get a room later, plus having to go longer w/out eating, etc.! Anyway, I get all pre-registered, then head over to get prepped for the procedure! I already knew I would be seeing little Arie that has an avm on her lip. She and her family live about an hour away, and her Mom Jodi had written to me that we would all be there @ the same time! Arie's Dad Denny was there, along with the grandparents! I was able to go over and get a photo of us right before Arie was taken in for her procedure! See her cute gown? That's an original Shalon creation for Arie! I think after this procedure, Arie may not have to come back for a year, just to make sure there are no signs of any avm left!
Mary (a/k/a "Boston") starts getting my IV going and all my information updated on their computer system. I'm already dozing, and somewhere in between, Celia gets a picture of me holding Saba!
Oh! Shalon left me a cute little surprise in the prettiest bag! Before I was taken in for my procedure - Kelley hands me something. I look in it and find the cutest purple snuggly socks that have little pink ridges on the bottom making them non-slip! Thank you Shalon - I put those to good use! You can see them in the photo of Celia and I when I'm holding Saba the bear!
Shortly after that, one of the anesthesiologist, Quinn, comes over to talk to me about how I'm doing. All seems in order, so I start getting transported to the surgical area. I remember moving over to the bed the procedure will take place in with Celia hugging me and waving goodbye @ the door! Next thing I know, I'm waking up in recovery. Of course Dr. Yakes did an angiogram, so I have to make sure and keep my right leg straight and not bend it. I pull myself to my right side and hold on to the bars on the bedside just to get off my back, as I have no back support and that hurts my lower back. I am realizing I can only take shallow breaths, and feel like I have a lot of phlegm I wish I could spit out. Normally, the most cc's of alcohol Dr. Yakes has used is like 22 or so - because if he uses too much, some of that alcohol traces back out and "burns" my skin! Come to find, Dr.Yakes told Celia he used 38 cc's of alcohol this time! WHAT? Course later, P.A. Kelley explained that probably half of that was "contrast" - a dye to make sure Dr. Yakes could see exactly where the alcohol was going?! He was working all along the lower part of my chin that hangs down, as Dr. Hepworth is wanting to debulk in that area next time I'm in Denver! So Dr. Yakes was trying to shut down some of those arteries!
So by the time I get put into a room after being in Recovery, I'm still having a hard time "breathing" - feeling like I cannot swallow or spit up the phlegm I feel is clogging my throat, so I can't speak! I can hear and feel the gurgling of the phlegm near the surface - UGH! Respiratory comes in and sets me up with the humidifier cup over my trache for moisture, hoping that would loosen that phlegm! Meanwhile, here is a photo of me still in recovery - and I think I look pretty good considering I don't feel well @ all! I had a very caring and considerate post op nurse, so that helped make me feel somewhat better!
Celia was allowed to come back in and sit by my bed in Recovery, so that was nice having her there! Finally, we got word that my room was ready, so we headed up to the 6th floor! Once I got settled in the room, one of the Techs that has taken care of me before had come in to take my vitals - her name is Zulan! She is very sweet and helpful! At one point, we're trying to figure out WHY I can't breathe well, and of course part of the problem was, when Dr. Yakes did the embolization - the swelling went inward, therefore blocking my airways! So I'm thinking, "why am I not hearing the word "Decadron"? That is the steroid that gets injected into my IV to reduce the swelling. Come to find I was getting maybe 2 mg of Decadron in my IV when I could have been getting like 4 or 6! THAT would have helped in the breathing department sooner! Plus, somewhere along the line, there was a miscommunication that had anesthesia or someone thinking that I needed my trache to actually breathe, when I really only needed it for putting me under during the embolization! So, the little balloon inside or that hangs out or both, were inflated some, when they needed to be completetly deflated in order for me to breathe on my OWN! Once that was determined by respiratory and my writing them notes and calling Mark to ask about it, and we upped the decadron, things started looking up a bit. Meanwhile though, I'm needing something for pain, and my body wants Oxychodone. That does not come in liquid form to put in my IV, so the nurses are giving me Morphine. My body says, "No, you need the oxy"! Guess what though, since I can't swallow, I can't take the oxy pill I need! My body is figdgeting and restless, so the nurses are giving me more and more valium to "relax" me because I'm panicing because I can't catch a deep breath! I'm afraid to let go and try to sleep because I'm feeling I can't breathe normally on my own! Usually, by the evening of the procedure, I am eating, talking and then take a shower to get the blood out of my hair! Since I can't swallow, I'm pretty much stuck not knowing what to do next! I remembered we had a dear friend in choir that passed away several years back - her name was Peggy. I can't remember the name of what she had, but from what I remember, Peggy could not swallow toward the end of her days and I can just imagine what a terrible feeling that must have been. Why do people have to suffer so much?
Here is a photo of the nurse waiting to see if I can handle an ice chip! A teeny sip of juice or water made me feel like I was drowning! Panic, panic, panic! "Hail Mary Full of Grace ..." I didn't want to overexert myself and not be able to catch a deep breath, so I wasn't about to attempt a shower! That would take too much out of me! Once in a while, Respiratory would come in and would ask, "Do you want me to suction you out"? Hoping to get the phlegm out. So a thin tube would be stuck down my trache until I could't take it anymore and I would start pulling it out because it wasn't doing any good except choking me and making me cough! You know who I thought of alot @ this time? My brother-in-law's Mom, Pat Fossum. She spent the last few months of her life in a hospital in Houston and suffered so much. Pat would have to be suctioned out by respiratory - she had emphysema and other complications that made her life difficult toward the end. My thoughts and prayers were sure with her. Celia spent lots of time praying with Pat while she was in that hospital in Houston, and now ,my poor sister Celia having to see me suffer too! She never once complained and this a high maintenance woman folks! Celia spent several nights with me in the hospital, as I was afraid of being left alone and not being able to get a nurse fast enough to let someone know I wasn't breathing! I think one night I only got a half hour sleep. Celia would get up with me every time I needed to use the bathroom and help w/my IV and untangle all my tubes and my wires! My IV first started off on my left hand and somewhere along the line, one of the nurses felt she needed to move the IV to my right hand. This gave me several days to have some IV Antibiotics to really get my darned ear infection cleared up! I needed that BAD! Finally I think on Saturday I was able to swallow a pill! What a HUGE accomplishment! That meant my beloved Oxy - my best painkiller was on the rescue! Slowly I was able to take little bitty sips of juice and you'll see a photo of me trying a little cup of ice cream! What a luxury! Wow - I thought I had a photo of me going for some cream of wheat - soooo delicious! (I found it! Check out how happy I am to go for that bowl of cream of wheat! That always reminds me of Grandma's house - she would make that for us)! All along we kept thinking, "how long before I can swallow"? I can't leave the hospital until I can swallow! I went four days without eating or drinking anything! The nurse kept wanting me to try and eat some applesauce with blue dye to see where it would be going, but there was no way for me to swallow anything!
I think it was Sunday when I finally felt up to taking a shower and guess who helped me with that? The REAL Saba! She is such a dear - she was happy to see me and helped wrap up my IV with plastic and got me all ready to get cleaned up! Meanwhile, Celia would take a short trip to the hotel to shower and take a power nap or surprise me by bringing me those cool, funky dutch shoes that I liked so much! WOW! My poor Mother was in a panic @ home and I'm sure crying to her siblings with worry over what I was going though! This was almost as tough for me a the trache trip! At one point Celia thought maybe having Mark with me would help, but after looking into a flight - that would be costing $1800 and that was ridiculous! Mom was wanting to get my Mark, get in the car and start driving to Denver! As it was, my brother-in-law Greg is an angel and told Celia to take care of all my medical needs/costs! From getting our airline tickets, the car rental the hotel, prescriptions - you name it, she paid for it! We are so blessed to have such a loving, generous family that offer so much prayer and faith! My dear friends Felice, Patty, Terry - choir members that called Celia - Aunts and Uncles praying rosaries - Thank you from the bottom of my heart! This is one TOUGH time for me! Celia had told me she had gone to Adoration before our trip and said that as she prayed (and I hope I get this right) she felt God talking to her - telling her that He would not leave me and would be with me all along durig this time. Celia said she could hear Him say for her to take care of me and for her to share this with me, that He would be by my side! Where would we be without our Faith? I can't wait to read some prayer books that my Aunt Eva sent me in the mail! I'm excited about that!
One of my favorite nurses came by to say hello - Dave Labadie! He was one of the original "Dream Team" from the very first embolization I ever had @ Swedish! Dave is an awesome nurse and he makes you feel you are in very capable hands! I had two other nurses (female) that I had been taken care of before that I really enjoyed - one other nurse was new to me and she was very good! One of the Anesthesiologists Assistants came by to check on me as well - she said Quinn was wanting to make sure I was ok! One of the male techs that I had before taking my vitals was a hoot and it was nice to see him! Lots of great folks working @ Swedish - after going 6 years I'm getting pretty familiar with the group!
I'm going to draw this to a close - could not WAIT to get home from work today! I really should have taken more time off work, but I just don't want to use it all because I'll need it for the future!
Know who was on our flight from Dallas to Corpus that we didn't even know about? Dr. David Miller - he is a Pulmonary Specialist and went through throat cancer! A fellow choir member while Mark and I were still in choir - when I found out what David went though and endured - that gave me the courage I needed to jump in and get all my avm appt.'s going! David has been such an inspiration for me! I have always been able to turn to him for advice and he has always been such a comfort to me! Here he is posing with Celia for a photo! I was telling David I was afraid of the debulking process and he said to stay positive! I was so happy to see my family @ the airport! Here, Hanz and I are going for each other to get a kiss! I missed Mark so much! It was great to see Mom and Vicente and of course Greg rounds up our family! Mark Fossum had plans for the evening and Davis of course is in AZ! I think Celia and I have learned how strong we can be when we have to - we get that from our Mom! Time for bed - Goodnight! Love to all!
Mark & Cyndi
P.S. Soon I will start preparing for the April visit by taking some iron pills and probably getting a transfusion @ Dr. Yakes and Dr. Hepworths suggestion, as I am borederline low and need to get my blood supply up before I lose any more during the debulking in April! Thanks to all of you for your continued prayer! Thank you for following us on the Journey!
Posted by Dulce at 7:08 PM
Tuesday, March 16, 2010
Greetings everyone - Family, Friends and Prayer Warriors! This blog entry may be in several parts - we'll see how much I can get done tonight! Our first big adventure started shortly after Mark and Hanz dropped me off @ a meeting point where Celia would pick me up and drive on to the airport! Got settled into Celia's car and immediately started catching up! This was like @ 4:45 a.m. and next thing you know, we missed our turn to the airport and got lost! Our flight left @ 6:00 a.m. and we ended up on some back country roads! Our Good Lord guided us - because the gps wasn't doing that great a job and we could not believe it was as if time stood still - we made it! To boot, we kept hearing that there would be foggy out, but it wasn't, so that was a big help! Made our connecting fight in Dallas, picked up our car rental and headed out to our Conference with Dr. Hepworth that came from the other side of town, to meet with us @ Dr. Yakes office @ Swedish Medical Center where I usually have my procedures! Saw Dr. Yakes patient coordinator Sadie first - she was busy on the phone and with patients. Then saw Eric, Dr. Yakes P.A. come down the hall and gave me a hug. Everyone is so friendly, makes a big difference! Next, Dr. Hepworth arrives and we are escorted to a conference room to wait for Dr. Yakes. Meanwhile, Dr. Hepworth (ENT) is checking out my trache! Dr. Yakes steps into the office and shortly afterward, so does Kelley, Dr. Yakes other P.A.! Kelley mentioned that fellow avm-er Shalon Whitgob had just been taken in for her procedure and asked if I could come by to say hello as she sat in recovery. I told Kelley I would try, but we may be on the other side of town by the time Shalon got out of her procedure.
Meahwhile, Dr. Yakes, Dr. Hepworth, Kelley, Celia and I all sat down and went over what the doctors want to do next, and apparently both doctors agree that they need to debulk under my chin area before the avm starts to compromise my airways! We sure don't want to hear that! Both doctors want to get this done soon, so @ their suggestion we are looking into late April - and that trip will not involve any embolization swelling like when Dr. Yakes works on me. The debulking will probably take place @ a different hospital that Dr. Hepworth works out of! Dr. Hepworth mentioned going in under my chin area, cutting out an oval shape section and getting old tissue and fluids out through there! Sounds very scarey to me! We asked a few questions, got them answered and felt good about what we were hearing.
By this time Celia and I both hungry for lunch, so we head out to the Cheesecake factory for lunch @ Park Meadows Mall! We both ordered one of our favorite meals; sweet corn cakes with chuncks of avocado, some sour cream and something like chipolte sauce! We also shared a nice, big salad that had green apples, corn, greens and vinegrette dressing! See photo! Course we each decided we had to order a piece of cheesecake and I went for the key lime cheesecake and I think Celia went with the raspberry lemon ladyfingers cheesecake, or something to that effect!
After lunch we of course had to take in some of the mall sites, since we don't really have a good shopping mall here! Found a neat shoe store that Celia picked up some dutch clogs @ - I had liked some that had a flower print to them, but I wasn't in the market to shop for shoes! Celia picked some out that were navy blue and had little sparkles on them! I had told Celia I've been wanting to get some dark blue jeans, so we went in search of those! Course that is something really too time consuming for this type of trip, so I abandoned that idea right away! I always like to see the puppies @ the Pedigree Petstore, so we headed that way just to see how cute the puppies were! See photo! There were no pure bred Brussels this time - boo, hoo! That's ok - I have the cutest one in the world @ home waiting for me! I just enjoy being able to pick the pups up sometimes!
Had to go check Borders Bookstore out, since both Celia and I are such big readers! She generously volunteered to buy me another copy of the Stephenie Meyer book Breaking Dawn that I was carrying and was in tatters as I've read it 7 or 8 times! Should have taken her up on it, but had told her we were headed to Wal-mart later and we would get it then, darn! We were really trying to squeeze in some fun things before I knew I would be stuck in the hospital the following day. Boy, am I ever glad we did - we had no idea of the nightmare ahead! Celia had already volunteered to buy me the jeans I wanted, but It just wasn't a jean shopping trip. I always love going to see the latest @ Build a Bear, so Celia helped me choose some cute outfits for Saba and that was her gift to me! We did go to Wal-mart, but didn't find Breaking Dawn - went to Safeway for some specific cookies I like - little did I know I almost didn't even get to taste those! I was also looking for my favorite spray starch @ that store that I just don't find in Corpus Christi anymore!
So, we finally make it to the hotel and get all checked in! We had a 2 bedroom suite - very nice, w/a kitchen, living room and dining room table! We get all settled in and then decide that the lunch leftovers were just not what we were wanting for dinner - so Celia decides we go find a Diner that she and Mom enjoyed when they were both w/me when I had my trache surgery in November! It was a decent dinner, so after we ate, we settled in for the night! I'm ending this now and will continue immediately afterwards, just to take a break in the story!
Posted by Dulce at 7:14 PM