I want to start off by wishing all of the wonderful mothers out there a happy Mother's Day!
It has been nearly 5 months since I last updated. WOW! I kept telling myself that I really needed to update, but the more time went by the harder it was to catch up. So, bear with me as I try to make up for lost time!
My health took a drastic turn in the beginning of January. I firmly believe my MCAS decided to say phooey on any new years resolutions and started a full fledged revolution! ;) I began feeling very achey all over and very fatigued. It gradually worsened over the course of a couple weeks and I began having headaches, nausea, and lack of appetite. I got to a point I couldn't eat anything by mouth other than liquids that would come right back out via my G tube drain and couldn't do formula either. This made it to where all I was getting was 2L of fluid per week. I became extremely sick and weak with a resting heart rate of 155 and ended up being admitted to the hospital for 5 days due to severe dehydration. They were continuously giving me fluids, gave me 10 bags of potassium, and got me back on formula, albeit a very low amount over a long period of time. By the time I was discharged, I had improved a good bit. Once home, I quickly started to deteriorate and almost got to the point of having to return to the hospital. However, in an attempt to keep me home, my local mast cell doctor put me on potassium infused saline infusions 5 days a week in addition to the 2 days I was already receiving the plain saline infusions from my cardiologist. Thankfully, that successfully kept me outpatient! I continue to struggle with nausea, headaches, fatigue, aches, etc. and I have lost 63 pounds so far this year which has resulted in having to have multiple J tube changes because Mic Key Buttons aren't adjustable, so once I shrink to a certain point, the tube gets way too loose which makes it necessary to change to a smaller size. I'm nearing the point of having to have it changed yet again. I've gotten my formula rate up a little bit since my hospital stay and have my pump set to where it runs around the clock, feeding me for 2 hours and then automatically stoping for an hour to give my body a little rest. I still cannot eat/drink anything by mouth unless it is something that will automatically flow right back out through my G tube drain. I am on a liter of potassium infused saline all days of the week now due to very little fluid intake (in my formula) and my potassium fluctuating and being low most of the time (I get blood drawn to check up on my levels once a week when my home health nurse comes) and I'm on an oral B12 and folic acid supplement due to those being deficient. There are days I feel so defeated and want nothing more than to curl up in a ball and die, but I'm so grateful for the Lord's strength and the people He has put in my path to encourage me. The Lord has shown such grace and comfort on my behalf, and I know, even when I feel so alone, He is always here with me. It is still a mystery as to what really set off this whirlwind in my body, but for now, we are treating symptoms and trying to fix everything it is causing.
On a happy note.... I'm excited and looking forward to welcoming another niece next month!!! Vivian will officially have the roll of big sister! If Auntie Allie had enough energy she would definitely be doing a happy dance! ;)
I appreciate your continued prayers and support through this difficult journey! I make no promises, but I will try my best not to let so much time pass before my next update!