Feeds:
Posts
Comments

Archive for the ‘Tummy troubles’ Category

Fleeting Freedom

Posted in At the Doctor's, Hospital life, Keith, Life, mito, Sick and Tired, Sleep, Tummy troubles on 6 January 2011| 9 Comments »

I checked back in to Chateau de MGH last night. Yup, they just couldn’t keep me away!

Over the last couple days, I had been getting increasingly worse sharp pain in my upper left abdomen. I joked to Keith that my spleen and pancreas were duking it out. But I hadn’t pooped in three weeks so it could just be constipation, right? We started pushing mag citrate through the tube. 3 bottles over 30 hours, to be exact. No success.

It hurt to move, it hurt to breathe, it hurt to sneeze and cough and burp. I laid on the couch in the fetal position all day on Tuesday with the occasional moan or whimper. Keith threatened to take me to the ER on numerous occasions. I resisted. I had just escaped; there was no way I was going back so soon. I gave in to pain medication and took 4mg dilaudid PO. I didn’t even get a slight buzz… there was something wrong with that. Four hours later, I crushed another 4mg and put it through the tube. Still no relief. No wooziness even. What was wrong? Why wasn’t my body absorbing it?

(more…)

Read Full Post »

No Place Like Home

Posted in Blessings, Family, Friends, Hope, mito, The Future, Tummy troubles on 31 December 2010| 2 Comments »

On Wednesday, after 25 days in patient at MGH, I broke out! But I did not leave empty-handed. They sent me home with a nifty new pump and GJ tube to help me get nutrition, 5-6 new medications, and gram-positive staph (as well as another bug I can’t recall) UTI.

The different fluids, formulas, and supplements that were able to get me home: Peptamen 1.5, TPN, Potassium, Magnesium, and Saline

I was so happy to get out of there that I didn’t even care they were sending me home with a REALLY nasty UTI. And – as luck would have it – we got a call from Dr. Sims’ office literally one hour after we left. My biopsy was back. Brilliant. Unfortunately, they wouldn’t tell us anything over the phone, but they were able to squeeze me in for an appointment in two weeks. (Usually it takes months to get in with her, so we’re pretty happy we don’t have to wait too long.)

Now that I’m home, I want to reiterate how much we appreciated everyone who called, sent cards, and visited. I don’t think I could have kept my spirits so high without you all. Especially our amazing visitors: Stef, Karen, Sarah G., Liz, Nana, Beepa, Ralph, Will, Sasha, Katie, Elena, Corynne, Missi, Erin, Crystal, Tapas, Sophie, Jonah, Rebecca, John, Sarah F., Aly, Rachael, Tali, and Kevin. Sorry if we missed anyone! And a huge thanks to everyone who sent cards. They helped keep the room festive during the holidays.

My Card Corner - Thanks for all the love! 🙂

Now I’m just readjusting to my freedom. I’m experiencing a bit of culture shock, coupled with how much more complicated my life has become with new medical devices and medications. But we’re hoping that with the better nutrition, we can better keep the mito from progressing. While I was inpatient, Dr. Sims added a few new supplements to my mito cocktail and we’re hoping that those will decrease the episodes of dystonia, seizures, cyclic vomiting, etc. and increase my quality of life. It has certainly been a tough year for us (and for so many of our dear friends), but we’ll keep fighting and looking to a better future. Thank you, once again, to everyone who has stood by us on this crazy journey. It wouldn’t be possible without you!

The beautiful view from our hospital room - Floor 22 of MGH

Read Full Post »

Blackjack and a Blizzard

Posted in At the Doctor's, Blessings, Boston, Family, Friends, Holidays, Hospital life, Keith, Kiddos, mito, Tummy troubles on 26 December 2010| Leave a Comment »

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.

(more…)

Read Full Post »

« Newer Posts - Older Posts »