Hi Everyone! Did everyone have a Happy Thanksgiving? Hoping all of you have lots to be thankful for and many delicious things to eat surrounded by family and friends! Celia hosted Thanksgiving this year, setting a beautiful table, full of all our favorite gourmet recipes!!! Her son Mark helped her prepare a lot of the food, while Greg fried 2 turkeys and we all anxiously awaited Davis' arrival from CA! Mom and Vicente, Mark and I rounded off the group for a special time we all enjoyed! I was surprised I was able to stay up as long as I did and took my time making sure I tasted every dish!
This has to be one of the hardest treatments I've gone through - whew! I spoke to Mandy, one of Dr. Yakes P.A.'s a couple days ago, and even asked her whether it was just me being a "complainer" or if it seemed like this was just a tough time. She definitely agreed w/me that I had a very hard time of it. Since my previous treatment, I'd had several major bleeds from the inside of my mouth requiring me to have a couple of blood transfusions in order to "fill up my tank" to capacity! That alone is no fun. I was just getting over the bruising from the one transfusion when I needed another right before this procedure.
My sister Celia and Mark take turns going w/me to Denver and poor Celia got stuck with me this time! Normally we arrive in Denver on a Tues., then I go in to Swedish hospital the following morning for my embolization and and kept overnight for observation and released the next morning, which would be Thursday and we would fly home that afternoon. Well, since I had been having these major bleeds going on, Celia thought it might be a good idea for me to just be checked in to Swedish the moment we arrived on Tuesday - which is what we did. We all felt safer this way, didn't want to have a bleed @ the hotel and have to buy the matress like it had happened once before!
I was happy to find one of my favorite nurses would be on duty - he was one of the original "dream team" as I call the group that took care of me the very first embolization procedure I had! Dave Labadie is so enthusiastic and full of energy and an awesome nurse! Saw another favorite that came by to say hello - Zufan! The staff have become like family and always ask for my own family as well! One of the cleaning staff, is a dear and always keeps me in her prayers - it was nice visiting with her!
Next morning it's finally time to go have the procedure done, and I asked that Dr. Yakes go easy on me, even though I know he knows best what needs to be done @ the time! (He ended up using 21 cc's of alcohol - that is ALOT)! Dr. Yakes took some time to talk to Celia and I before I was put under - I commented on how I heard that my fellow facial avm-er Shalon is now "done" with her treatments! Dr. Yakes said that would be me too some day! I cannot even imagine! I will include a photo of Shalon and her husband Josh. Shalon has been instrumental in helping me w/so many avm issues! She created my blog and has been so supportive in every way! If I didn't have her, I would have probably already gone nuts wondering whether this would ever be over for me! Just seeing her go through and complete her treatments, gives me new hope to strive for the end of this journey!
Back to story .... course next thing I know, I'm waking up in recovery and not a happy camper @ all! The steroids I have been taking for the swelling have had me craving strange foods, so I've been eating a lot of dairy even though I am lactose intollerant! I had stopped doing that because I feel I develop a lot of phlegm that way, and this is where I think I ran into having some problems during this procedure! (I have to say, that the steroids also affect my sleeping - I tend to sleep in spurts, so I'm up until midnight, then maybe wake up @ 3:00 a.m., then again @ 5:00 a.m.). This doesn't help Mark bit since he needs his rest for work! The steroids are also drying my hands so badly, they are cracked and bleeding - but I need to take the steroids to diminish the facial swelling from the embolization.
The recovery room nurse assures me that my oxygen is @ 100%, so I'm wondering why I can't breathe well?! My mouth was so dry I could barely swallow. I kept putting my finger over my trache tube opening in order to try and clear my throat, as I wondered where my little white plastic cap that goes over that area is. I specifically talk to the anesthesiologist before going under, about needing that cap in order to be able to cough, clear my throat or whatever. I'm not allowed to bend my right leg, as Dr. Yakes has done an angiogram, but I grab on to the bed frame and pulled myself on to my right side, hoping that in that position I'll be able to breathe easier. It will be a while before I'm allowed to get up or bend my right leg and I just start praying Hail Mary's trying to keep myself calm. I am able to "write" the nurse a note asking for pain medication and am visited by Kelly, Dr. Yakes Physician Asst. Celia was brought in to see me and apparently, while I was under, I learned that I had problems breathing several times during the procedure - so am told I will spend the night in ICU in order to be monitored. I just wanted out of there and to be able to sit up @ an angle, hoping to be able to breathe easier!
Once I'm in ICU, I have a fantastic nurse that is doing everything possible to make me more comfortable. I'm having lots of anxiety, due to so much phlegm - even placing my cap over the trache tube opening is causing me to hack a lot and close to throwing up. Poor Celia - having to witness my suffering and trying to help in any way possible! I was afraid to "sleep" and not be able to breathe, so I would ask for medication to calm me down. I kept standing up next to the bed, just happy to not have to be in it anymore! I spent one night in ICU (Wed. night) and 2 more nights in a regular room where I was finally released on Saturday morning! See photo of me w/the last RN on duty to take care of me before being released! Everyone @ Swedish is so fantastic, caring and supportive! Celia ended up having to rearrange our flight, her hotel stay and everything in between to accomadate my having to stay extra days that we hadn't planned on! Even had a priest come by to give me the annointing of the sick - that was so great! Told me Dr. Yakes is a good Catholic - good to know!
I find out that I have a pseudomonous (sp?) infection in that open wound on my face - who knows for how long, but I'd recently started going back to wound care, since after the previous treatment, I had some black "scabbing" that I knew needed to come off in order for it to heal under there. I was put on some IV antibiotics by the Doctor for Infectious Disease and Control in CO, and knew that when I got home, the IV antibiotics needed to continue! Had a pic (sp?) line put in on the back of my upper right arm where the IV would be administered. I asked to be sedated a bit for that, knowing that would cause me anxiety.
Celia made arrangements to have Nurses on Wheels come in once I got home, before we even left the hospital, to teach Mark how to give me the IV and also to do my wound care. The IV antibiotics upset my stomach so much, so my primary care physician advises me to take acidopholus and Activia a couple times a day. I'm also low on postassium and iron and am taking calcium, so on top of all the other meds, I have to toss in a few vitamins!
As unpleasant as all this has been for me - Mark is not having any fun either! He no longer has the wife he married, but a sick individual he is having to take care of that is none too happy about what is happening to her! Pray that he continues to have strength for us and that we both survive this time of our lives! I also have to add, that both Mom and Celia have gone above and beyond (and Greg is a Saint!) in helping me with anything I need - from taking me to my primary care physician, to helping me pay for office visits, meds, helping around our house - anything they can do to make things easier for us! I couldn't ask for better family/friends as a support system - Thank you everyone! My in-laws Doris and George always keep me in their prayers as well as list me in their parish prayer book! My brother -in-law Jim and his wife Shelley are extremely supportive with prayer, financial, get well notes and generally being there for us! I have the best friends ever - always doing things to make me feel better - offering prayer, calls, e-mails and surprise gifts to cheer me up! All my aunts and uncles have either called us while we're in CO, or e-mailed me or through Mom with all their love and prayer - love all of you! I'm so blessed! I remember thinking while I was laying in recovery - that how miserable I was right then would be a distant memory later .... but dang, I am only so strong and this really took it's toll on me!
I just can't get over how I'm feeling and acting older than Mom and Vicente right now! It's been difficult to realize that my body won't do what my mind tells it to do! I'm guessing from the very strong IV antibiotics that might be causing the weakness in my limbs. I can barely raise my arms high enough to wash my hair. I have to "wrap" my IV site in plastic to make sure it doesn't get wet, otherwise I'll have a bacterial infection. My legs can barely make it down the two steps on the porch - yikes! For a while, I was taking too many oxycontin, so Dr. Boynton got me off of those by using a Fentanyl patch that would decrease in strength with time. In order for that pain patch not to burn my skin, the doctor had me spray an inhalant on the area, then place the patch over it. Apparently I "missed" an area in a line of several inches, because about a week ago when I replaced one of the pain patches, I had a burn mark on my leg that hurts alot! It was tender for a few days, but feeling better lately.
Of course my furry children Hanz and Bella keep my spirits up - they are so sweet and cute! They're mommy's angels! Here are some photos of our babies for you to enjoy! You should see how excited they get when Grandma or Aunt Celia come over! Hanz got so excited once when Uncle Greg came over, that he almost had an asthma attack! Breathe Hanz! :)
Finally the IV antibiotics are done - went to see Dr. Boynton yesterday to have a culture taken, so we can see if that infection has cleared up! Once we determine what is going on w/that, I can have that pic site removed! I am anxious to get back to work! I had called the HR person when I first returned from CO and asked whether I needed to worry about my job. Was told no, to just take care of myself! I'm pretty confident I can return to work Monday! I had a wound care appt. this morning that went very well! Was shown a photo of when I first started wound care this past time around and a current photo and can see a definite improvement in how the wound is healing! I already feel better being off the IV meds - that was what was d-r-a-i-n-i-n-g my strength! I'm used to being active, it was so hard to just give in to the fact that I couldn't do anything for myself except get back in bed to get rest!
Thanks again Mom and Celia for everything you do for me!