Emergency trip

Hey Everyone! I know a lot of you have been anxiously awaiting my next blog, to find out what is going on, so here goes! So, how much detail do you want? I love to write, so if you have the time, I have the specifics! Pull up a chair and your favorite drink and join me on this journey!

I had come to the conclusion that I would not be able to wait until my regular appt. w/Dr. Yakes after July 4th - so Celia quickly made arrangements for us to head to CO! I believe we headed out on a Wed. - driving from Corpus Christi to San Antonio, TX! The flight would leave San Antonio and get us to Denver in a couple of hours. Soon as we had arrived in San Antonio, I had started working on making sure I would have a humidifier for my trache once I arrived @ the hotel in Denver. Lately, we had been staying @ the Marriott Suites on Monacco that had a kitchen area and a couple of bedrooms. This time though, w/the last minute notice, we ended up having to stay @ the Marriott Tech Center hotel, that Celia ended up liking better. It was a nicer hotel, but no kitchen, darn! Anyway, with all the rushing around, I had forgotten the paper w/the information I needed to get my trache equipment set up, and even though I called the Apria company that I needed to be in touch with, no one seemed to know what I was talking about or what I needed right off! Called Mark for help and there is so much paperwork everywhere that he wasn't able to help me out right away either. Once arriving in Denver though, I tried again and could not believe my luck when I actually reached the SAME GIRL that had been on call the last time I needed the same equipment and she remembered me! What luck! Her name (forgive me if I misspell it) is Shermaleen and she is fantastic! Right away she gave me all the information I would need and I told her what hotel we would be @ and Shermaleen said she would do her best to get me what I needed! By this time it was getting pretty late and I thought there was no way this could be done in time - but you know what? Shermaleen made it happen! Yay! Wow! How do you spell "relief"?! See photos of Shermaleen setting up equipment in hotel room! I'm convinced if it had not been Shermaline on call, my equipment would not have been delivered!

I was to show up @ Swedish the next day (Thursday) by 1:00 p.m I believe to get set up for procedure. I had been told I could have a "light breakfast" @ 5:00 a.m. so I wouldn't go all day w/out eating/drinking - but I didn't want to go there! I know I was added on to the schedule, but do you know what time I was finally taken into surgery? By 8 p.m.! Dr. Yakes himself came to transport me to the surgery area! Can you believe it? To boot, their schedule was just packed and they had only 1 instead of their usual 2 surgery rooms available due to reconstruction or something going on! I remember being concerned that when I get out of surgery that I never have that little cap over my trache tube that allows me to talk or clear my throat and I spoke to Quinn, the Anestheseologist about it. Course first thing I want to do when I wake up is move and all the nurses jumped @ the same time telling me not to bend my leg because of the arteriogram Dr. Yakes had done. So, I start praying for patience to help me through how long the process will take before I'm out of recovery and into a room, etc. One of the male techs/nurses/transporters (?) was trying to make conversation and kept saying to me, "That is such a cute bear, what is her name"? The other nurse kept telling him, "she can't talk right now". He was of course referring to Saba, that I always take w/me on these procedures for love and comfort!

The floor nurse came and introduced herself and I remember her saying something about taking some of the gauze out of my mouth. UGH! No wonder I was feeling all claustrophobic - I had a big wad of gauze inside my mouth! Of course there was more fun to be had - with all the swelling, I would not be able to swallow for a few days! This meant staying in the hospital longer than the usual overnight stay! There is no way I would be released unless I was able to swallow some of my medication in pill form. In some photos, you can see I'm wearing a "hose" like wrap on my arm to keep my IV intact w/out it moving so much. Need to have that for all my meds!

I remember Dr. Yakes saying something about there being a big vein @ the back base of my tongue, and that is where the bleeding had been coming from. So, of course in order to take care of that problem, he had to shoot the area w/16ccs of alcohol, which means swelling and discomfort! I had Dr. Yakes and his P.A. Kelly come by several times during my whole stay to check up on me! I had to laugh @ one point because the nurses were even in awe that Dr. Yakes was actually there in person! They would joke about there being a Dr. Yakes sighting! Celia just missed Dr. Yakes a couple of times, but I grabbed my phone and took a photo, although not a very good one! He had asked if I wanted him to bring me some books, because he saw I was reading and was enjoying myself. Told him that Celia was out doing the very thing for me, so no bother. He even offered to put another blanket on for me because it was a little nippy in the room!

I just have to say how Celia just went above and beyond the call of duty during this trip. I felt so bad for what I was putting her through, but her thoughts were only of how she could make things better for me! Shortly after I was put in a room, I didn't feel like doing much of anything! Celia would ask me if I wanted the TV on or whether I wanted to walk down the hall and my answer was always no. I felt like a zombie and didn't want any added noise, distractions or anything going on! Later, I did take her up on walking down the hall! Saw the bulletin board of photos of some of my favorite nurses! Course there is Dave LaBadie - he is one of the "original dream team" - from the very first procedure I had @ Swedish! To the "original Saba", and others that have become friends like Zufan, Becky, Judi, Nate and Victoria! Victoria always has a smile and remembers me!

Little did I know the fun was just beginning though! Dr. Yakes said for the next couple of weeks that I could only have "soft food" and I wondered what he really meant by that. He mentioned eggs, mashed potatos and pudding. I started figuring out anything I didn't have to chew, like a piece of meat - things like jello and yogurt! You can see where I have a syringe in my mouth - one of the nurses suggested I try that to get some food in my stomach!

I want to get this blog out, so I'm just writing and putting all the photos I have between my phone and what Celia took w/her camera! Would you believe I had a small therapy dog come by? The lady that trains him even gave me his card, but I can't find it right now to tell you his name, but he is a Lasso Apso (sp?). Our dogs Hanz an Bella are often mistaken for this breed! Speaking of our babies - I was happy that Celia was w /me on this trip, since I ended up having to stay longer than expected, @ least Hanz and Bella were home with Mark!

After getting home from Colorado, I started noticing it was hurting to swallow. I knew I wanted to see my primary care physician again before heading back to work, to make sure I had plenty of refills on all my meds and was taking everything correctly! My tongue also felt like it had been cut many times with a razor blade - ouch! When I went to see my PCP, Dr. Boynton, he diagnosed me as having "thrush" 0r a yeast infection in my mouth from all the steroids I had been taking! Yikes! Dr. Boynton said it would be @ least 48 hours before I would feel better, but it turned out to be more like 4 days! My hands were also pretty dried up from the steroids, causing cuts and bleeding! Ooooh that reminds me, I had a terrible bleed from my mouth a few days ago! I was using a Q-tip to get food away from my gums and boy that bleeding came fast and furious! Had to pack my mouth with gauze to have it finally stop! I'm posting this and will add to it as I remember more!

Cyndi

Those steroids sure are a catch 22! On the one hand, I knew Dr. Boynton wanted me to wean myself off of them, little steps @ a time - but I also felt like I couldn't because they were helping with the swelling on my tongue! Course if I didn't wean off of them, not only does it slow the healing process, but then the next time I would need to take steroids, then they wouldn't work for me because I didn't get off of them like I should! Ugh! Stop the insanity already!

Meanwhile, I'm up @ all hours of the night w/the steroids, keeping Mark up and every time I get up to get a snack, the dogs get up and follow me into the kitchen or wherever I'm headed! I've been getting by on a couple hours sleep a night and I try and make up for it during the day here and there!

Here is a picture Celia took of a rabbit outside the hotel!

How many drugs can I take and still stay awake?

Is that like the commercial many years ago that showed a wise old owl asking, "How many licks does it take to get to the inside of a tootsie pop"? I wish it were that simple! Hi Everyone! How are you? Right now it seems I'm battleing with keeping my pain level under control. Yeah... I was doing great after the last procedure the first week of May, but when I started to go down to 2 steroids a day from the 3 that I was on (20 mg. each, so that is 60 mg of Prednisone a day!), the pain started increasing! I called to speak to Dr. Yakes P.A., Kelly and she approved and called in more meds so I could have 3 a day again and slowly go back to 2 and then one. I have not been able to feel as well as I had been feeling before - no way. Seems now I'm constantly looking @ the time and trying to figure out what I can take to control the pain and not fall flat on my face from over medicating myself! I can't be falling asleep @ work! As long as I'm moving around, I'm ok - but if I close my eyes for a few seconds, I'm gone! Actually, the other day Mark and I (along w/Hanzarella) were on our way back from visiting with Jim and Shelley in Rockport, and Mark was telling me some story about something that happened @ work and I was looking @ him, listening and sometimes commenting on something he said. Next thing I knew, I could hear myself snoring! My eyes were wide open though! I even told him, "I know, I heard myself, I can't believe it"! That was ridiculous! Stop the insanity already!

Ok. So much to do, people to Thank and think about ... ! Last week, Mark and I attended a Mass for our healing intention that our sweet choir friend Terry Schneider has for us every couple of months! I wish I could be there for her, she is dealing with her own health issues lately and here she is doing nice things for us!

I finally went back to have lunch @ the restaurant where I had that terrible bleed before going back to Denver this last time. I just wasn't ready emotionally to go back to that restaurant, and also, I felt bad about what had happened there. My co-workers were always assuring me that the management was asking for me and were concerned about how I was doing! Sure enough, the waitress was very happy to see me and asked that I not be bothered about how anyone else felt about what happened. They welcome me back always! I have to say, kuddos to my co-worker and friend Diana A. - the brave soul that I go out to lunch with some times! She has training in the nurseing program, so blood doesn't scare her - but to think she is willing to be not only seen with me, but to deal with whatever this horrid avm will dish out @ any given moment! She and I have lots in common and enjoy discussing books, coffee, our cross stitching hobby, our pets, The Royals! Her sister lives in England and Diana's brother-in-law works in Parliament, so that always makes for interesting conversation! I'm waiting to receive my commemorative stamp issued the day of the Royal Wedding of Kate and Will that Diana's sister was nice enough to go purchase for us! COOL!

We recentely found a "dog park" that we had heard mention of before, but could never find. Since we love taking the kids to Petsmart, we often have conversations w/other pet owners and had heard about a park in Corpus that allowed dog owners to take their dogs to run and play with other dogs! Started talking to a lady that owns a chihuahua (see photo) named Tako (yes, with a "k") and she was the one that mentioned the dog park! Decided to really look into it and found something we really like! There is an elementary school that allows pet owners to use their playground several days a week, as long as the poop is cleaned up! So, dog owners can bring chairs to sit on, drinks or whatever makes them comfortable, water for their pets and poop bags to clean up after them! Hanz tends to stay close to us, but Bella makes the rounds and gets in a submissive possition on her back and runs around everywhere! See photo. The "dog park" has a Facebook page and is run by Amanda - she has a Great Dane named Phantom and a smaller, cute dog named Lola!

Well, unfortunately, another avm problem I've been having, is feeling (and knowing) that blood is running down the back of my throat! It usually happens when I'm eating, and it's scary not knowing how much I'm going to have to keep swallowing before it either starts comming out my mouth or what! I don't want it to come out my mouth, because I can't open my mouth very wide right now (due to the avm, and not being able to work w/the therabite since my "wound" is too fresh from the procedure still)! When I do bleed and it comes out my mouth, it is alot and globs - UGH! Poor Celia (and Mark), they've both witnessed this and it's not pretty! So a couple weeks ago, about 2:00 a.m. I woke up knowing I was swallowing blood. Got up and woke Mark up where he was asleep on the couch. Wanted to make sure someone knew if I started choking or something! The only thing running through my mind was that no one here would know how to help me if I went to the ER. Called up to CO and woke up poor Kelly (Dr. Yakes Phys. Asst.), but had to find out if I ended up having to make an emergency trip to CO - was Dr. Yakes even in town or wanted to know how packed their surgery schedule was for the next couple days so that I might be squeezed in! I had already decided to just wait until morning to ask these questions, but Mark was already getting Kelly on the phone. It was just going to inconvenience way too many people to try and fly up there in the next day or so - we decided to just wait it out and hope it didn't happen again! When this happened, I panicked - you would think I would be used to it, huh? If I bleed from somewhere that I can apply pressure, no problem! But when I'm swallowing blood, that is another thing! Can't stop it on my own then! This actually has happened again a couple of times, but luckily doesn't last long. I just pray that I don't have any major bleeds until I can get up to see Dr. Yakes in early July!

I wanted to show all of you how great Shalon is looking these days! I am so happy that she has made such progress! She is paving the way for the rest of us that still have a ways to go! I remember before having her first debulking surgery, she really grilled the doctors with all her questions to make sure she knew what they would be doing to her! With her posting her surgical photos and showing us what she went through, @ least it gives us an idea that we'll be ok through it too! I think she looks fantastic! Here she is with her wonderful hubby Josh! He reminds me so much of Mark - loves his wife and very supportive!

Anyway, I just want to thank all of you for sticking by me with all your prayer, friendship, love and support! Look at the lovely prayer shawl our choir friend Margaret Irving made! How fantastic is that?! Wow! You know, once in a while, I was lucky enough to stand close to Margaret (she is a 1st Soprano and I'm a 2nd) while we were singing in the choir loft during a rehearsal, and she has such a beautiful voice - that I would end up not singing because I got so involved in listening to her! Every time she'd see me, she would greet me by saying, "Hey pretty lady"! Celia says Margaret used to laugh @ all the faces I was making during rehearsal over something the director or someone was saying. I didn't even realize that I was reacting that way, but apparently it was amusing Margaret across the room! We've really made some great friends through the years we spent in choir!

So much more to write .... so ...., to be continued.

Ok, I finally have the photos to post of me with the prayer shawl! I was just so moved by the fact that our friend Margaret really took the time to not only make this shawl, but to be surrounded in her prayer as well - WOW! This is why I always say that all of you are with me on this journey as well! I so often tell people that I really am blessed and I mean it! I've included photos of me @ St. Pauls in Flour Bluff, where our dear friend Terry Schneider has Masses for our healing intentions! If you'll notice the kerchief I'm wearing - that was given to me by a friend/co-worker, MJ Gamble - that has become a fun, supportive friend! She'll come across something she knows will cheer me up and brings it to me @ work!

Now, I can start working on blogging from the procedure I just had! Thank you so much everyone for all your love and support!!!

Cyndi