Still Miles to Go

Today marks Day #21 in patient at MGH. It also marks our first real blizzard since moving to New England.

I apologize for the delay in posts. The second go at the GJ procedure was a success, but I’ve been in a significant amount of pain and discomfort since then. And not too much has changed – despite yet another tube running into my body. Nonetheless, this will likely be a long post to get everyone updated on the latest news.

The combination of the tube feeds (at a relatively low rate of 25mL/hr), TPN, and Saline with Potassium have bloated me up to the point of looking about 6 months pregnant (no joke!). It’s rather uncomfortable, but my metabolic panels have been far more steady. We’re hoping I can get up to at least 30mL/hr on the tube feeds so I can discontinue the TPN, but we’re having some difficulties with that right now. They really don’t want to send me home with a central line (I still have the PICC line) so we’re hoping that I’ll be able to wean off the TPN soon.

Rewinding a few days, Thursday’s procedure went without any serious hiccups. My heart rate went a little funky and I was in a good bit of pain afterward, but that was expected with me. They were able to place a G-to-J tube (a tube that goes through my stomach and to my jejunum, without a port for direct stomach access) and have ordered me a MIC-KEY button that will transform it to a traditional GJ tube and allow me to vent (and give meds directly to) my stomach while feeding will continue to my small bowel. This will go in within the next few weeks after I’ve healed a little and the button has arrived. I’m looking forward to having something with a smaller profile that will allow me more flexibility.

The next two days were incredibly rough on me, pain-wise. I slept roughly 16-18 hours each day since Thursday and kept the pain medication and antiemetics (Zofran and Benadryll) round the clock. I think the healing factor we’re missing right now is simply time.

On a related not, we have noticed that as they have decreased the IV fluids (with the increase of enteral fluids) that my autonomic issues are returning with a vengeance.

I believe I’ve spoken in the past about my issues with autonomic dysfunction or dysautonomia. I almost always have moderate to severe tachycardia (an abnormally fast heart rate) that regularly jumps to as high as 180 just standing (and even higher walking across the room). I also deal with orthostatic hypotension (my usually low blood pressure – average 90/60 – drops to 70/45 when standing or walking). And recently, we’ve also noticed severe issues with temperature dysregulation. I’ve almost always had an average temperature of 96.1-97.1. In the last year or two, it now varies wildly between 96.5 and 100.9. And it’s dependent on the temperature of my environment. So during 100 degree summer days, I’d jump to 101 going outside whereas I drop a few degrees going out in winter weather. It’s a pain and I always have to plan ahead with instant cold and ice packs.

We haven’t really come up with any solutions to the above issues. I increased my liquid intake (I generally take in at least 3L a day, one of which is pedialyte) and my salt intake. Neither made much of a dent – though it’s WAY worse when I’m dehydrated! Well, since I’ve been here, I’ve been flooded with IV fluids. And it’s been amazing! My temperature has been relatively stable between 97.5 and 99.1 (except when it was almost 101 with my UTI at admission), my blood pressure has been incredibly stable around 110/80, and my heart rate has averaged 105 (though it still jumps to 160 or so when I walk to the bathroom or otherwise exert myself). I didn’t know how amazing “normal” could be. Unfortunately, when we started weaning the IV fluids a few days ago, my issues have come back full force. My blood pressures haven’t been better than 95/70 (not bad, but that’s the highest) and my heart rate hasn’t been lower than 112 resting (and the wicked high jumps have returned). My temperature has also started jumping. I feel freezing and then sweating and can’t seem to get myself comfortable.

My mito doc here at MGH was quite pleased at my improvements on IV fluids, but she is hopeful that I won’t require them on a regular basis. Right now, we’re just hoping we can get the nutrition under control first. One step at a time, right?

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Despite all that depressing medical crap, I still feel blessed to be me. Because we weren’t home for Christmas, our local “family” threw us a mini-Christmas on Christmas Eve. Getting the chance to see and celebrate with Stefani, Ralph, Sasha, Will, Nana, and Beepa really made it “okay” that we weren’t going to be home for the holiday. We got to see people who loved us and missed us. And one of the best parts? True’s boyfriend, Beast, came and brought our girl a fancy little sparkly red cocktail dress. And, boy, does she work it! 😛

Mr. and Mrs. Santa Paws

We were also able to get a few pictures in between the excitement of gifts. Nana and Beepa got us a new camera (ours was irreparably damaged from repeated drops including the sand at the beach – Keith – and Space Mountain at Disneyland – me) and I’ve been having a blast playing around with it. And Stef got the whole crew tickets to go see Disney on Ice – Princess Wishes. I think I may have been more excited than the kiddos about the latter. 😛

My best girls and munchkins bringing some Christmas Cheer last week.

Our Christmas Eve Celebration at MGH

We’re so grateful for everyone who has called, sent cards, and/or visited over the last 21 days. I don’t think this stay would have been bearable if it weren’t for each and every one of you. So thank you, thank you, thank you! I hope everyone stays warm and safe tonight with the impending blizzard set to hammer Massachusetts pretty hard. We’re looking forward to watching it fall on Downtown Boston from the 22nd floor of MGH.

Finally, we also want to send some love to a few other mito friends and families who also spent the holiday in-patient (or struggling to remain at home). We hope your Christmas spirit wasn’t lessened by the holiday ickies, Eithene, Crystal, Ava, Karen, and Matthew! We love you all!