Angel Sunshine's AVM Support

Doing laundry, packing, watching Angel sleep peacefully, starting to clean the room, goodbye Ronald McDonald House, we're going home today!!!! Angel had another nerve block yesterday (Stellate Ganglion), large needle in her neck, not a fun procedure but it was over quickly. Unfortunately no relief so the Dr put her on Methadone to give her body a break from the dilaidid and, hopefully, bring the tolerance down that way rather than the 5 day ketamine infusion. Hoping this works as we need to get home to our own beds, our dogs, our support network, my job, her friends...you get the picture...bills don't stop coming in but the paycheck is smaller when I only get half the time put in, thankful I was able to do that and looking forward to putting the hours in this coming week. Need to call the neuroopthamologist next week, the wobbly eyes are returning so, possibly, another round of hyperbarics? We'll see what the future holds, thinking positively and hoping (praying) we'll see things start looking up from here. Thank you all so very much, you may not feel like you've done much but we feel the love and that's what keeps us going when things look hopeless. Thank you for the long talks, sharing your problems too and maing me feel "normal" even if it's just for a little while, that helps more than words can express. Don't think I could have made it these last 2 years without all the love and support you have given. Thank You, 2 words that seem inadequate to cover all that you have done and the love you have shown without fail..I don't think it's possible to really let you know how much this means to me, to Angel, it's overwhelming when I sit and think about it. Cyber hugs to all! I will post another update sometime next week, please hit "share", let everyone know how much you've helped us, and maybe we can help someone else by showing how much love is really out there!!! Be healthy, be safe, and know the love is coming right back at you all!

We were at the ER last night until 5:30 this morning. Pain level was off the charts and they had to give her fluids and IV meds to bring it down to a tolerable 7 (out of 10). Can you imagine having a headache for over 2 years now? Found out today that the Dr has been out of the office the last 3 days, that explains no return call...she has an appointment at 9 tomorrow morning to see what the next step will be..she's developed a strange rash, red and radiating heat that moves frome one area to another. Stumped the Drs at the ER, possibly a side effect from the nerve block...hope to get answers/direction tomorrow. Will post another update after we learn more tomorrow. Please keep sending good thoughts, positive energy, and prayers. Your encouragement helps more than words can express. If you have time, hit "share" we haven't made it around the world yet! Sending the love back to you, cyber hugs for all!!!

Back at the Ronald McDonald House in Cleveland...We checked in Saturday ("easier to get a room on Saturday than on Sunday") and enjoyed the Superbowl with the other families watching the tv off the kitchen, good food good company but NO alcohol, Angel commented how strange that was, a Superbowl with no beer, wine, or mixed drinks!!! Gotta love a 22 year old perspective! She had a Tri-Geminal Nerve Block Monday and, by Tuesday late afternoon, returned to the same pain level as before the procedure. I called her Dr and they didn't get back to me until this morning and that was just his nurse checking on Angel's status to pass on to the Dr and saying she'd call me back as soon as he went over her info...still waiting. His original plan was to try a Stellate Ganglion Nerve Block next and, if no relief, go to the 3 to 5 day Ketamine infusion. I'm wondering if it might be best to just go to the Ketamine as that's what is supposed to "reset " her tolerance level for the pain medication. I'll definitely bring that up if he doesn't come to this logical conclusion himself. She stayed in bed all day yesterday and is still in bed now waiting, resting (thankfully), and building up her energy for the next step. When the pain gets really bad, you can gauge the intensity by the redness in her cheeks and ears which will also spread to her neck and chest. She was rosy last night and it really tears me up having to see her in that much pain and not be able to do anything to help. It makes me want to stomp across the street, make my way to the Dr on the second floor, grab him by the arm and drag him over here to see first-hand what she's going through. I'm sure Security would grab me before I could get him out the door but, what a thought...in a perfect world!
I will post another update after I hear from the Dr to let you all know what the next step will be. PLEASE hit "share" so that this can get to everyone who may be following and maybe her experiences can help someone else who may be suffering. Keep sending good thoughts, positive energy, and prayers...we LOVE you all!!!