Good Morning everyone! How have you been? Well, we've had some interesting things going on, and it's been a while since I've blogged, so here goes!
May 1st marked my 50th birthday! Don't feel my age @ all, and turning 50 didn't bother me a bit, because right now my life is on hold with this AVM! Nothing matters but that, so I don't even know how I would normally feel turning 50! Mark hosted a wonderful dinner party for me with delicious steak filets, roasted veggies with pineapple on the grill and wine of course! Mark also made his trademark cake - an Italian Cream from scratch - yummy! Wasn't much up for photos, but did get a couple of good ones of Hanz and Bella with the roses that Mom and Vicente got for me!
We just got back from CO and what I believe is my 40 something treatment/embolization. You know, this has been discouraging for me lately - getting tired of the whole thing! The last time I had an embolization was like Feb. 21 and right afterward, had several pretty bad bleeds from inside my mouth! One of those happened during my lunch hour @ work in a public restaurant! Yikes! Luckily Mark had been with me and Celia came to help as well! The day before leaving on this trip, a friend/co-worker was treating me to lunch and my mouth started to bleed! Luckily, it was minor and didn't last but a couple minutes. Scary though! That was on a Monday. We left for CO the next day, and that night (about 3:00 a.m.) I had a bleed from inside my mouth! It was really coming out - I hollared for Mark to wake up in case I fainted or something, but it was alright after a bit. UGH! I don't even know how I slept after that happened!
This trip I had decided to try and see if I could get a humidifier from the Aprea Company here that supplies my trache needs. Turns out there is an Aprea in CO, so I was able to get all set up with a humidifier I need to wear on my trache during sleep! That makes everything easier when I'm in surgery! Without the moisture on my trache, I would wake up after the procedure feeling very dry and wanting to hack/cough!
So we arrive @ Swedish @ 7:30 a.m. - get all ready for the procedure and the anesthesiologist came by to introduce himself! Don't ask me his name right now, but he is in one of the photos, holding a trache box. Here is a photo of one of Dr. Yakes P.A.s - Mandy! She's really sweet and was going over some meds/paperwork with me! See Saba in the bed behind me?
The next photo as mentioned earlier, shows the anesthesiologist. I've always had so much trouble getting a trache replacement from anyone down here, that we had gotten to where we would request 2 when I arrived in CO for an embolization. One to change out and another to take home! The Tech from Aprea promises she can get one ordered for me, so we're going to try it from her end in CO, since we haven't been able to get one ordered for me down here with Aprea! Actually, glad Mark had his eagle eye catch the fact that the first boxes brought out were the wrong size trache! Totally too long/big and not @ all what I needed! Whew! So glad Mark caught that!
Anyway, all went well enough - you can see in the photo where my arm is wrapped up in a hot towel, getting ready for that IV! The nurse got it in first time and it wasn't too terribly painful, so that all turned out well! I was on the phone talking to my dear friend Felice as the nurse was inserting that IV, so she was glad I was distracted and on the phone - made her job easier!
The anesthesiologist came by prepared with a needle full of my happy juice, so I barely remember even being wheeled out of there! Most of the time I'm wide awake until I am moved over on to the bed in the surgical area - but this time all I remember is hearing that I was getting that injection in my IV and then waking up! The nurse kept telling me that she couldn't find Mark in the waiting area - no kidding! He never sits there and waits, and she finally said she would try him on his cell phone! I knew I had to lay flat due to the groin injection for the angiogram, so I could have been more comfortable. To boot, I had this long tube left on my trache, and without the little plastic cap @ the end of the trache, I can't cough, clear my throat or anything! I needed Mark there to tell someone, because @ the time I couldn't do much about my situation! I started praying to get me through the waiting period and next thing I knew, I was being told I was going to be taken to a room and that Mark would meet me there! Whew! Finally! Got settled in bed and slept a while. Poor Mark, bored watching a movie in the room with me. Woke me up so I could order my dinner - had lots of soft food. Scrambled eggs, malt 0 meal, yogurt and juices! Dr. Yakes used 14 cc's of alcohol this time, and I don't look too too bad as far as swelling! Made sure the nurses knew to give me decadron (steroid) for the swelling to get that under control soon!
Mark stayed with me until 10pm or so, then headed back to the hotel to get some rest! I sat up a while and read, dozed off and on.
Next morning Mark arrived with my usual treat of a white chocolate mocha from Starbucks - took a shower to get the blood out of my hair and got dressed and out of there! Caught our flight out of Denver on time, but as usual, had problems getting home after that! For whatever reason, the flight that had us arrivng in Corpus Christi by 9:30 p.m. was delayed a couple of hours, so we didn't land until right before midnight! My dear friend Sylvia and her husband Randy had generously offered to take care of our furry kids, Hanz and Bella and we needed to go get them still! Last trip before this one, had us stuck in Dallas an extra night - which meant one more night that Sylvia had to keep my kids and us missing them so much too! Mark gets after me for commenting out loud on missing the kids while we're in CO - but we had run an errand @ Wal-mart and I had lost Mark in the store. Called his cell and do you know where he was? In the pet supply area! He had to admit, he was missing the kids too! We were all so happy to see each other when we arrived @ Sylvia's - she was nice enough to stay up so we could get Hanz and Bella home! It is amazing how much those kiddos mean to us - they complete our household!
Ok! Enough for now ... I've got lots of Thank You notes to write for goodies received from family/friends lately! Thank you to all who are with me on this journey - your love and prayer helps to get us through. I've gotten a little discouraged as of late, and my friend Sylvia told me, "no, don't do that, you're my hero and you need to stay positive"! That's where all of you come in - your prayer gives me strength to endure and carry on! I'll be in touch! Happy Mothers Day to all the Moms!
Love,
Cyndi Schuman
P.S. right now my only discomfort is black scabbing on my lip and chin area. Glad Dr. Yakes worked along my mouth area - maybe that will be the end of any more mouth bleeds! Unfortunately, it makes it hard to brush my teeth on the left side from swelling and dead skin I lose! Yuck!