Thanks for tuning in! I need all of you so much and appreciate your love, prayers and support - that gives me the strength to go on! I'm thinking of you especially David Miller! Lets see ... where did this latest adventure start ..., Oh yeah, last week I was having a hard time keeping my pain level under control. I knew I needed to get in to see the doctor, and the soonest I was given an appt. was the following Tuesday with Tammy, Dr. Boyntons Phys. Asst. Tammy is great and she loves seeing my little Saba when I have an appt. Come Monday I was desperate to get in to see the doctor and called the office and was lucky Dr. Boynton had a work in that morning. I didn't know whether the small amount of puffiness under my left eye and the pain in my ear area (that little "flap" above the earlobe was soooo tender - ouch!!!) was being caused by a stubborn infection that wouldn't go away or what! All I knew was I needed help and relief immediately! Dr. Boynton gave me a choice of starting w/oral antibiotics or admitting me to the hospital and getting IV antibiotics which of course would be the quickest way to get things going! Mom had come with me to this appt. and I had my two bears, Saba and Rulon and I have to say say that Tammy stopped by the exam room I was in just to see Saba and she had not met Rulon yet! Most of the doctors staff commented on my darling furry kids! Anyway, back to my story! Mom and I had lunch and I went home, took a shower and packed a bag and headed to Dr.'s Regional to be admitted. Mom had gone home to get her crocheting and stayed with me until Mark was able to get to the hospital after work. So of course the fun began with IV's and blood work - the nurses and lab tech were good - just one try with no problems! Mark stayed w/me very late and finally went home. I was sleeping when I felt something on my neck and I could not believe I was having a bleed! I had not had a bleed since being back from Denver! I immediately pushed the call button for the nurse that got to me right away and I know the amount of blood she saw must have freaked her out. In seconds my entire nightgown was covered in blood and I kept telling her I needed a mirror to pull the dressing off so I could see where the blood was coming from and put pressure right on the area. Normally when I have a bleed, I go get a mirror, take the dressing off and put pressure where I'm bleeding. Unfortunately, I was hooked up to the IV and could not get up and away from the bed to help myself! The nurse called for help and I called Mark - we live a few blocks from the hospital so he was there right away! The nurse kept putting pressure on the area with a towel and that was almost getting that blood in my eye! I finally got the nurses to listen to me and get the mirror I had in my wound care bag. I removed the dressing and a big flow of blood was coming from the top part of the wound. Usually when I have a "bleed" the arterial flow is a thin stream of blood, like the size of the end of a pin. This time it was a thick flow and we know that area had some puss (probably due to the infection, and the area was painful) so since it was a weak spot .... therefore the bleed. Anyway - I held pressure on my face w/a towel until Mark got there and got everything under control. I know the nurses were looking out for my best interest, but one nurse said she wanted Mark to spend the night and move me to ICU where I could be watched better. Well, unfortunately of course, if I'm in ICU there is no where that Mark could sleep - so instead it was decided that I would stay in my room and a nurse was called in to sit next to the bed and watch me all night to make sure I didn't bleed again! By the time all that happened, it was already almost 2am and we all agreed Mark just needed to go home. I know I woke up about 3am and was talking to the nurse (it was a nice male nurse) and I slept some. Every morning Dr. Boynton would check in on me and I kept asking whether the blood test were showing an infection and it just seemed I never really got a definite answer! Mom stayed with me all day and she kept telling me to just rest, I kept yawning and my eyes were tearing from needing sleep, but I kept figeting and felt like crawling out of my skin! The nurse finally had to give me some Xanex, and one dose didn't help - a few hours later she gave me more and I finally slept some. It was decided that after that major bleed (the only one worse has been the one I had in San Antonio over the summer) I needed a transfusion again - 2 units. Of course that meant another IV in the other hand!
I thought of you again David, and how you eased my fear of having my first transfusion! All along this time, I had to keep asking for pain medication because it was just not being controlled! When I was in Colorado during that week I was @ Swedish, I had asked Justin (male nurse) how he was keeping me pain free so I could follow a similar schedule. He was nice enough to write it out completely, along w/drawing a chart and all. I gave a copy of that to the nurse here ... but oh well. The nurses were very nice and I know I'm just a rare case that baffles most medical staff.
Speaking of medical staff, I would periodically call up to CO to ask questions and seek help/answers! Dr. Yakes nurse Julie called and was very sorry to hear I was having a set back. I asked her if this would ever really, really be over for me one day, because I was just not believing it @ this time! I wanted to know whether she felt Dr. Yakes would be able to completely get rid of this AVM! She assured me that Dr. Yakes would be able to help and that he was very pleased with my progress ... and are you ready for this?!? Julie went on to say, that Dr. Yakes felt we were 8O% done! WOW! Now I'm not going to hold him to it - but just hearing a ball park figure of where we're at was wonderful to hear!!! Course once Dr. Yakes is done w/me, then Dr. Snively (Plastic Surgeon) will do his part and I have no idea how many reconstructive surgeries I'll need with him! Going back to Julie though - she felt I should not have had that embolization while I was in CO since I had already gone through so much w/the infection.
Then Rhonda (Dr. Yakes Phy. Asst.) called and we talked about all I had been going through. She felt like I did need to have that embolization, even after having the infection, because it's very important that we keep ahead of this avm and not let it get ahead of us! In all reality, Dr. Yakes would like to see me every 4 weeks (Shalon goes once a month!), but I'm doing good to get there every six weeks because that is when that darned avm reminds me, "I'm Here"! Rhonda agreed that since I was on steroids most of the time I was in the hospital this past time - the combination of the steroids and antibiotics is probably what I needed now. So, she was concerned about stepping on Dr. Boynton's toes, but I assured her he is a fantastic person and I felt he just wanted whatever is best for his patient! When Dr. Boynton wrote the prescription for the steroids, he gave me 10 mg. but I need the wompa steroids @ 20 mgs! Rhonda had already told me she would not be available the next day due to a class or something she needed to take, but she would have Eric, Dr. Yakes other Phy. Asst. call me. Eric is super nice and he did call and he too was concerned about overstepping on Dr. Boynton, but I assured him I felt Dr. Boynton would appreciate their input. Eric ended up calling in the steroids I needed. Dr. Boynton wanted to keep me one more day, but I pleaded to be able to go home! I had already been on the required 3 days of IV antibiotics, so knowing I had steroids too - I was anxious to have IV's and needles out of my arms!!! The lab tech came to take blood @ least 4 times if not more! I kept telling them it's no wonder I need a transfusion, y'all keep taking more of my blood!
Oh! I almost forgot! Wed. after work, Mark had gone to HEB grocery store to get a couple things I had asked for and ran into our friend Pauline Foegelle! She said we had been on her mind and Mark filled her in on where I was. She had invited Mark over for dinner, but Mark thanked her and told Pauline that most of his time was spent w/me in the hospital. When she got home, she told her husband Keith about running into Mark and he too said we had been on his mind. Keith calls me @ the hospital and asked if it was ok to come by and bring us dinner! Wow! Talk about nice! It was a cold night out and I kept telling them it wasn't necessary - but they wouldn't take no for an answer and we are so glad too! It was great seeing them and hearing about how their daughter Mary is doing! I always know how old she is, because she is in our wedding video in a baby carrier a few months old! So, on December 19th we celebrate 16 years of marriage and I want to say Marys birthday is in August or September when she turned 16! Not only did they bring dinner, but cookies, candy and the cutest little stuffed dog in a Santa Suit that plays (or barks) "We Wish You a Merry Christmas"! They really cheered us up just chatting about what all everyone had been doing lately!
Markie Poo Hoo came by to see me - brought a pretty arrangement of carnations in a Christmas sleigh! I told him his hug and kiss was the best medicine ever! He's a doll and right now he is having his own surgery for a deviated septum. Poor kid, can't breathe through his nose! Davis is on his way home from College Station today, so some time this weekend I hope to see both of them! Mom wouldn't let me go to see Markie before surgery since I just got out of the hospital myself.
Celia & Gregs friends The Satoris' sent a vase of white carnations with pine and fir. Mom brought me a beautiful and fragrant red rose from her garden, and Greg just stopped by with some goodies for me from the girls @ the office! I got some chocolates and munchies and Saba got 2 outfits and Rulon got one too! Mom & Vicente's friends came by while I was in the hospital, Pam and Gene - Jim knows Gene! Also Helen and Joe Lee also came by with a lovely get well card for me - they are dear friends of the Morins that all spend time playing Mexican Train and just enjoying each others company! Mom Schuman called this afternoon to see how I was doing - that was so sweet! They were heading out to Dianes to see her son Matthews girlfriend graduate from college! I told Mom Schuman maybe she could send a photo or two our way from the event and she was glad I reminded her to take the camera!
So I was finally sprung from Dr.'s Regional by 4pm Thursday - yesterday! Once I got home, I waited for Mark to get home from work - poor guy, he had to go 2 different places to pick up prescriptions, plus the medical supply place I get my wound care supplies since we needed some Tegaderm! I took a shower once he was home and put on some comfy jammies while Mark made a big pot of chili and cornbread to go with it! Unfortunately I couldn't eat too much of it - I have some discomfort on the inside left part of my mouth that hurts with that chili sauce. Darn! Luckily chili freezes well! Both Mom and Celia had brought me good books to read, so last night I felt like I was in heaven ... sleeping in our wonderfully comfortable bed w/my husband next to me, something good to read and NO IV's ANYWHERE! Whew! Am I long winded or what? Well I want y'all to feel like you are right there with me and I love to write! You know before getting that transfusion, I was just dragging and telling Mom that I didn't know how much more I could take! I know when most of you see me I'm upbeat, but I do have my down times and this last hospital visit was definitely one of those times I just felt like it was too hard to be cheerful! That's the reason you won't see but probably one photo (Mark only took 2) and he hasn't had time to download them on to the computer from the camera!
So there's my story folks! I'm feeling better - still not sure why my eye was puffy - I know the avm is blocking my inner ear where maybe the puffiness is coming from fluid build up - even though I have a t-tube in my ear to help w/drainage. I don't know - I just want to be able to keep my pain under control and not have a bleed!!! I really think that bleed was just due to that area being too moist and that avm has a mind of it's own! I do know how blessed I am that not only do I have my immediate family here in town doing all they can for me, but also my brother-in-law Jim and his wife Shelley have been very supportive and concerned. They sent me a lovely Get Well card in the mail! My in-laws Doris and George have been praying, along with Schumans and friends up in Ohio and Indiana and all over the U.S.! Lots of Fossums (my brother-in-law Greg) are also very concerned, his brothers Mike and Terry and their mom, Pat and some of his family in South Dakota! My moms family in Oregon and Washington and of course all our wonderful friends here! If it weren't for all of you and our faith to give us strength - Mark and I could not do this on our own! We need all your prayers and the combination of medical teams here and in Colorado! Let's look forward to the end of this avm business, ok?
Oh! As always - if you have a moment, please keep up with my new BFF Shalon! She has so much interesting information on other AVM-ers, plus all her own adventures! You can get to her web site from mine, or go to http://sites.google.com/site/shalonsavm/Home - you can read about all her trips to CO and she puts great medical information on there! Plus, as an added bonus - you must visit her new blog site - that is where she has information on other people that have avms and Shalon just always has cute stuff on herself on there. She, like me, also has an amazing husband that is extremely supportive and loves her so much! Joshua is super nice! You know one of the nurses was telling me that Mark looked so tired when he came in one day and they asked him if he wasn't getting enough rest. He responded with, "I can't sleep alone without my wife"! That's why I wanted Dr. Boynton to release me and not keep me that extra day - I needed to get home to my wonderful husband that I missed so much! Ok! I've gone on long enough! Thank you everyone! We love you all!
Mark and Cyndi Schuman
I'll try and post a photo later tonight!
Friday, December 12, 2008
Posted by Dulce at 11:10 AM