Saturday night, my parents came over for take-out Chinese after peregrine mass. I wanted to make it to mass, but with so little sleep and nutrition, it was too high of a goal. Aunt Kathy helped with everything around the house - the kids, cleaning, dog walking - since she arrived Friday evening. Drew was good at giving hugs and showing her his toys; Lucy continued to scream when she was held unless Adam, G&G or I was around. Must be a comfort thing for her that one of her "regulars" are in full view.
I was grateful to have someone with me and to give my parents and Adam a break. We had dinner (well I downed one of 5 juice boxes again), and helped get Drew ready for bed. I then took my night meds, had a warm shower, took my ambien and slept through the night again. The zanax and ambien did it - I love Dr Gordon. I hate meds of any kind, and she knows it, so when I ask for something, she is always on board and no I won't abuse anything.
Sunday I rested at home - I felt really groggy after the ambien and stayed in bed a while in the morning; we get up early with Lucy at about 4:45 (she doesn't sleep as well as Drew) and then I take my meds at 6 and start juice boxing by 8. They sit soooo much better than the formula. By no means yummy; but I'm getting used to it. Mom and Dad worked on projects at their house, and came over with take out Chili's around 5:30. Aunt Kathy treated us to meals while she was here; she was so kind. We didn't make it to mass Sunday either; I haven't since labor day, but am still building up strength and catching upon weeks on lost sleep - not to mention the side effects of the meds. We had a nice dinner/visit, played with Drew and Lucy, got Drew's bath and prayers done with the help of my parents, and then Mom and Dad left. We talked with Aunt Kathy until Lucy fell asleep, and went to bed around 9. I tried hard to stay up Sunday after my morning nap, and by bedtime, I was able to take a Zanax and no Ambien, shower, and sleep through most of the night again.
Lucy was up on Monday morning at her regular time, 4:45. I helped watch her as Adam got ready for work. We got both kids ready by 7, and Adam left for Grandma/Grandpa's to drop them off for the usual daycare routine. I went back to bed for a while, but kept getting interrupted by phone calls for more doctor appointments and results. I called Apria and they said another shipment of juiceboxes would arrive that day (which thankfully they did). I also worked for about 2 hours putting together a list of the timelines, symptoms, treatments, and doctors/phone numbers, so we could get the disability stuff taken care. My managers at work said they would handle it, and I wanted to provide all the information. So many weeks have gone by and so many people are involved, it's going to take the disability some leg work to do this, but they already have everything they need. I'm glad work will manage the headache that has been (I was only approved for 1 week disability, and the rep on the phone was really irritable). When you're this tired/weak/sick, that was the last thing I needed - so I turned it all over to my company to manage.
Aunt Kathy and I left at noon to head to Aurora for the Mugga Test. It was similar to a chest x-ray. They took me in back and drew blood. Then they mixed the blood with the radioactive material and waited 1/2 hour. Aunt Kathy and I had a nice visit in the waiting room talking about family and friends. I enjoy her company very much; and always turn to her and she's been there. After 1/2 hour, they took me back and reinjected the blood, and took 3 ten minute scans. Dr. Hussain, the one that called me Thursday night to tell me my heart was affected, came in a few times wanting to know the results. I wasn't sure if that was good or not, but it sounded like Dr. Gordon wanted the results while she was traveling. They finished the test, and I had an EKG, pacemaker check, and appt. with Dr. Gordon on Wednesday for followup.
Aunt Kathy and I headed back home about 3:30, stopped at Jewel to pick up a few things - I trugged through the store, but figured it was good to get some walking in, and we came home. Aunt Kathy helped get dinner ready for when my parents came over. I was grateful; totally exhausted just with the trip to the hospital and the 10 minute walk through the store. Dr. Saltoun, the allergist, called and wanted to talk about the echo as well. She said just like Dr. Gonsalves that my results, while showing my heart was impacted, didn't look typical of EoG. I told her I was following up with my regular cardiologist. We then discussed that the juice boxes were doing well, and that I would see her again 3 weeks post getting off the steroids to start allergy testing again. I'm actually pretty impressed at how often I hear directly from the doctors lately.
I then visited with Aunt Kathy until mom and dad came over with the kids (they brought the salad :)), and Adam came home shortly after. We had Italian - one of my favorites - but while it looked and smelled amazing, I can already tell the EoG fear of eating food has set in. I have no desire to taste anything, let alone want to eat anything. I think that is a good thing; it makes me just drink my juice boxes and get into a new routine.
After dinner, Adam and Dad took Drew outside to play "lawnmower". The weather has been amazing this last week. I checked my phone and missed a voicemail. Dr. Gordon had called. She said she just got the results of my Mugga Test, and it came back perfect. There was no impact to my heart. She did the "I told you not to worry" thing, and was grateful I was sleeping and there was nothing to worry about. I cried; just having that level of relief was HUGE that there wasn't something else to have to think about. Dr. Gordon is such a great doctor; she reminds me a lot of my cousin Katie. Very personable and caring. She has lupus like my mom and we share the same birthday - I knew I liked her :) So, we all celebrated that night, and I called Dr. Gordon back to thank her and let her know I'd see her Wednesday. I also called Katie to update her as well.
We had a dessert - Aunt Kathy treated us to all our meals and desserts this weekend - and watched the Sing Off. It's cute watching Drew wiggle his hips and clap after the acapella performances. We got him ready for bed with Mom and Dad help, and once Lucy was down, I took a shower and was able to sleep just with the Zanax again.
I had 6 juice boxes, had my period, off the Flagyl, my stomach felt good on the boxes, and no heart issues to worry about. It was a very good, happy evening.
Tuesday morning, my Aunt Kathy helped around the house and left for home. I was so grateful she had come. Adam dropped Drew off at Grandpa's, and Mom came over to help me with Lucy. I had a web conference with Dr. Taft, and she is working with me on the long-term plan as well as how to manage the anxiety of all the changes and the food trials upcoming. It's nice she can do it via web conference, to avoid weekly trips to Northwestern. The cleaning lady came, Reeses had his mobile grooming, and Mom did laundry, cleaning, dishes, and even put the bench together that was sitting in our living room. She worked non-stop from 7-3:30, when we headed back over to Mom and Dad's. I've never been more grateful to have both of my parents nearby and so helpful through all that has happened - the childcare, overnight visits, calls, emails, dinners, rides to doctors...I can't even list everything that has happened in the last 6 weeks. I'm still amazed at how many people have prayed, made meals, given rides, send emails/calls - it's very powerful to see how God guides you through challenges and how often you can find Him in so many people and places. I'm really, very blessed for my family. Ed and Pat Jarot provided dinner tonight, and I'm sure will be thrilled to see the brownies waiting for him. I also called Cherie today to share the good new on my heart. I'm still thanking God all the time for that. I am totally relieved. Adam and I were prepared not to go to a family wedding knowing we had so much going on and a heart condition on top of it; we've been given new hope that in 3 weekends, I'll be in a much different place and may be able to accomplish getting there with my family.
Our thoughts today have turned to my brother Dave, who starts his new photo-phoresis treatment for GVHD this week. It's a long 9-month treatment, and is supposed to be very wearing. We're hoping this will help his body heal and start a wonderful road to recovery for him. Hopefully we will all have more good news to share with this new treatment.
Tomorrow, we're off to see Dr. Gordon, have an EKG and pacemaker check and confirm all is truly ok with my heart. I'll probably stop the beta blocker after that visit too - yea, one last med! Thursday and Friday will be to rest, and to drop down further on prednisone after I talk to Dr. Gonsalves on Thursday. Hopefully the worst is over, and things will continue to get better for me and the family.
As always, thanks for your continued prayers and support!
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