My last two weeks in a nutshell

[Guest Mary from OH]

Well, that about sums it up!! I am so exhausted, I can barely keep my head up!! My daughter had spring break from school last week, so we decided to go to Tennessee to visit a long-time friend whose son has had small bowel transplant because of severe GI issues. I met her when Marissa was born because of all of Marissa's GI issues. Well, the 2nd day we're there, Marissa starts running a HUGE fever (103.8), the highest she's ever had her whole life!! Great!! Now what's going on!! So, my friend and I have to decide whether to take her to the hospital across the street from our hotel or downtown to Vanderbilt. We decided to just take her to the one across the street because we didn't *think* she was having GI problems. Although she was scheduled to start taking her antibiotic for her bacterial overgrowth in her intestines the next day. Sometimes she runs a little fever because of that, but it's usually only 99 or 100. And these are all high temperatures for her because her normal body temp is around 96.6.

We took her to the ER and they decided she had a (L) inner ear infection and a throat infection. They gave us antibiotics. (so now she's on 2). Marissa proceeded to keep her fever the whole time we were down there!! We were alternating motrin and tylenol every 3 hours, and she was still running a fever. It gradually came down a little every day, but it was still a fever. Marissa was taking 1 to 2 naps a day, which she NEVER does. So, I didn't get to see much of my friend. Plus, she and her husband ended up with food poisoning. Then her son (with the transplant) ended up getting sick too!! ARRRGGHHH

On the 6 1/2 hr drive home, poor little Marissa started vomitting up stool. I felt so bad for her!!! My poor baby!! The next day, she was already scheduled for a barium enema through her cecostomy.

On the brighter side........ I had my occipital nerve blocks done on the right side of my head the day before we left. And my neuro also changed me from oxycontin to palladone (morphine based). MY HEAD IS DOING GREAT!!!!! (KNOCK ON WOOD!!!!!!!!)

Marissa had her barium enema yesterday (they used a water based solution, not barium). She was very cooperative during the procedure even though she felt like crap. I was very proud of her!! The radiologist and I watched the screen during the procedure. It was NOT good news. Usually they only use one bottle of solution or less for a child. She needed 3!!!! Her colon is HUGE!!!! Not good news. There was NO movement at all in her large intestine. (we basically already knew that, but it didn't move at all from the sigmoid portion down!) Now, I have to wait to see what the GI and surgeon want to do. They did this test for several reasons: to see if her redundant colon has improved (it hasn't - possibly gotten worse); to make a decision about taking out the redundant colon; how to revise her cecostomy because it keeps prolaping... I don't know. They will come back and talk with us regarding some recommendations.

These past 2 weeks have been SO stressful. I am SO exhausted. All the meds they have me on are making me tired. My POTS is making me tired. I've about had it. But, I know I have to be strong for my child.

Thanks so much for being here for me and letting me share my life so I don't fall apart! You guys are the best!!!

[Guest tearose]

...and you are still in one piece? Mary, you are doing incredibly well for having to manage all this!

You must have a backup battery in your body! (Don't you wish!)

What a couple of long, trying weeks. Dare I say welcome home?

I continue to wish only better days for you, Marissa and your family!

Hope you still have that clay class to go to. You need that break for yourself!

best regards, tearose

[corina]

Mary,

best wishes for you and your family. I'm very sorry to hear your little girl hasso much going on. I hope Marissa will be doing (feeling) better soon. That will make things better for you as well. Good luck!

Corina

[Ernie]

Hi Mary,

I am sorry that the past 2 weeks have been rought on you. I hope your daughter and you will find relief soon.!

Ernie

[Guest Mary from OH]

Tearose-

My clay class starts up again on Tuesday night!! I can't wait!! I only hope I have the energy to do it!!! And that Marissa doesn't bawl her eyes out when I leave!!

[morgan617]

Mary, coming from a really bad spot right now too, I'm so sorry all this is going on! Am sending hugs and well wishes your way....morgan

[DancingLight]

mary dear and marissa too,

i have missed you here...and i was literally about to post a 'where is mary from OH' topic when your post popped up.

i was soooo sorry to see it was sad news and all that you have been through.

i pray for you along with my other friends here. since i am not up to typing...that is the best i can do right now...but it sure doesn't feel like enough!

and you silly, silly goose...don't you even feel one moment of guilt about not getting me a card (i saw what you wrote to me!). you must, must, must take care of you!

i also know that you are a worrier...and this time i was the worrier about you! we are all a bunch of worriers here aren't we?

i wish i had more words of wisdom. just know you are being sent many good thoughts...

emily