Wednesday, May 9, 2012

I adore this little girl...

She just continues to amaze me. The fight in her sweet little body is still so alive. I was reminded today by two different people that I haven't updated in quite a while.
It is just that I get so very down when we are not able to feed Annabel. Her belly hasn't work in a good while. We had so much hope but it seems her belly just can't take it.
We have been doing testing for the last 6 weeks or so. Just yesterday we went in to GI for the test results. He had not made a contact with surgery and I was just a little disappointed. But I love our GI doctor and how hard he tries to figure our little Annabel out.
We already knew what our surgeon thoughts are. We had an appointment originally to place a button into her jujunum (sp.) but when we spoke to him last week he said he wouldn't consider this. He said very directly that he knew her gut well from past surgery and that he had reviewed all her testing. He said she will never be able to eat until her colon is removed. He said it is and has been so largely dialated that it is so filled with air/gas that is acting as a wall when her small bowel tries to empty. But he was honest and then said even if we remove the colon that we may still have to go in later to remove the small bowel as it  posses problems also. But he finished by saying he wanted to speak with GI after she was scoped which was scheduled the following day.
After yesterdays appointment with GI he is waiting to hear from surgeon. But many times Dr. C(GI dr.) has said there is one more med we could try if I was open to it. It does have some side-effects that aren't so great. I am thinking the side-effects of TPN aren't so great either. So we have a plan, we will begin it for one week, talk and possible up this first med. Then after the 2nd week if she tolerates this first med, he will begin rotating different antibiotics to try to kill the bacteria that is in her gut. We will then begin very small, slow feed and then begin the medicine that will hopefully help with motility(with the not so great side-effects). I realize this is so confusing but it is because I really don't understand it either. They will walk us through each step. Thank goodness for my nurse who takes good note and has a better memory than myself. She asked him if this doesn't work, what them. He has said a few time recently that he is running out of options. His answer to if this doesn't work was there is nothing else short of surgery. He agrees with the surgeon about why the colon isn't/can't work. He also acknowledges that the small bowel does have issues in itself. But as not to be a total downer, some will have to be removed but some maybe able to be redirected.
As we begin this regiment, I will try to find out the meds and update with the names and their uses. Tonight was our first night and I know this med is called Imipramine. We are beginning with a very small dose nightly. This med is an anti-depresant. This is so hard for me as I don't like Annabel on much meds at all. I love her personality and don't want it altered in any way. (I am willing to try this in the hopes that this regime with allow her to eat again one day and not have these surgeries that are being discussed.)   
Thank you for all those that still read. I wish I was as faithful as I once was but this seems all I can offer right now.
Annabel is continuing to battle one UTI infection after the other. She averages about 5 days free of antibiotic and then is infected again. She is also battle c-diff (3 infections in the last 4 months). It is a crazy cycle that we can seem to find that balance. Just a couple months ago Annabel's weight was 38 plus pounds and yesterday she was 32 lbs. She seems so much more comfortable even though she is on the thin side. She seems to be stable with this weight. I will try to update soon.


Anonymous said...

My heart goes out to you. I adore your daughter and agree her personality is amazing.

ANewKindOfPerfect said...

Such a beautiful girl. I am sorry that the GI and surgeon didn't have better news. I know how awful it is when there is no way to feed your child, and you have to depend on TPN. It's rough. I hope and pray that the new meds give her some relief.

Ashley said...

I truly understand your struggle and disappointment with this news. It seems to get harder and harder all the time instead of easier and easier. I find that exhausting in our world with Ashley Kate. My hope is that you have daily opportunities to be overwhelmed with the blessings, the smiles, the giggles, the snuggles, the much so that it will overshadow the side effects of the new medicines. I love your sweet Annabel so. We think of you girls daily. Love you so much. Trish and Ash

KAL071203 said...

Your sweet girl is always in my prayers and while we love updates, we understand your number one jor is being Annabelle's mama, bigges supporter, and advocate. Praying God grants you and you family peace, healing for baby girl, and wisdom for her dr.s you are surrounded in prayer Cathy. Try and get some rest too!

KAL071203 said...
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Jenn said...

I think time spent with Annabel is more important than keeping up with a blog. That said, I check for updates almost every day. I'll almost certainly never meet Annabel face to face on earth, but I'm going to heaven after leaving earth, and so's she, so... SOMEDAY. Thank you for sharing what and when you can - your little girl is beautiful and just touches something special in me. And I'm not sure the best way to say this, without it sounding maybe a little odd... but even though I KNOW she's sick and struggles and has T18, when I think of her none of those things come to mind. Instead, it's her smile and the things you've described about who she is. Sometimes I read about what's going on and it is almost a shock, almost like "Wait, when did she get sick?" And then I remember she always was. But she is never the "girl with t18" or "the girl with digestive problems" or "the girl with infections" - she is just Annabel. Hope that came out right.

Barbara said...

Thank you for the update, but, what Jenn said.

Kathy said...

Will be praying for this regimen to work well with no side effects!!!
This little tummy needs a serious break and some time to heal.

Her joy never seems to diminish and I know that her Mommy and family have so very much to do with that!

Happy Birthday Cathy!!! Hope the Shelanders take some time out to do some serious celebrating!!! You are amazing and prayers and love are being sent your way.

Love you girls!!! xoxo

Anonymous said...

Happy Mother's Day, Cathy!!!
Holly McCormick

Elizabeth said...

What a sweet girl. We lost our little Ryan a little over two months ago to trisomy 18.

alissa apel said...

I do hope the meds work. Surgery is so hard of them. If she has to have it, at least she has a loving mom and nurse to help take care of her! She is such a pretty little girl!

My nephew that has Trisomy 18 just had jaw surgery. They had to bag him 2 or 3 times after he came off the ventilator. My sister was sobbing. That was 3 months ago. Now he's doing great. He had his jaw hardware and adenoids out. Then cut 7 teeth at once!!! OUCH! He'll be a year old on June 23.