Thursday, March 31, 2011

The plan is...

to discharge today. I am so excited and I didn't even ask and or beg. They came in and said they were getting all the paperwork in order, labs drawn to make up the TPN/lipids, and get the IV antibiotics ordered. Even though this infection brought us by way of three different hospitals. I can say that each stay was welcoming, peaceful and with good communication each time. Many people have emailed or forwarded me the link of the Serratia bacteria/TPN Feeding Bags. Thank you for the information. They feel that Annabel just has so much overgrowth of bacteria/fungus growing from so many antibiotics due to continuous UTI's.
I continue to be amazed at how many people remember Annabel. St. Elizabeth (our home hospital) still continues to welcome us and make us so comfortable. This is where we prefer to stay because it is so close to home. They tell me all the time if she needs labs just bring her up, since they know her vein so well and all the Picc team is always ready and waiting for her. The nurses continue to be so sweet to Annabel and myself. Even when we get transferred to other hospitals they call days later and check on Annabel. I know they are busy and they find the time to check up on her. This last hospital that was new to us, Memorial Hermann in Houston, was so welcoming. I have to say I had all kinds of anxiety built up as to how I would have to justify why we do things for Annabel due to her Trisomy 18 diagnosis. But of course, this never happened. Not one time did I feel like they didn't think she was the most important patient in their hospital. When we were being transferred on Monday evening to Texas Children's Hospital they formed a line as she was leaving the floor with nurses, aide, charge nurse and residents and all said what a sweet patient Annabel was to deal with. They talked of her beauty and how joyful she was to treat. I was touched to say the least. Our stay here at Texas Children's has been very good. There has been great communication and everything that needed to be done was done in a timely manner. We were so lucky to have a resident that graduated with Tara (how is that for making me feel old) and she was on top of getting everything done. She was very aggressive about getting Annabel into surgery last night. Since she was an add on, it was very likely she could have been bumped until today, but she wasn't due to her following up. I think she is going to be a wonderful doctor very soon. Also our attending (our first encounter with dr. L)was one of the best ever. Everything he said would be done, was! Also, her anesthesiologist, was very amazed that she was full trisomy 18 and had just turned 6. He said that is something you just don't see. I knew he was touched by her and would take good care of her when she went back. So all of this said, it makes for a much less stressed out momma. My prayer is to take Annabel home and pray for these infections to go away and that it be a long time until she needs another line. They reminded me that Annabel is very lucky. The three she has had 2 from yeast and this last one Serratia (gram-negative rod) are all considered life threatening. God continues to heal Annabel each time quickly but at this point no long term side-effects of these infections. So I probably won't blog again today since we are all busy unpacking and getting meds and schedules in place. If anything changes I will come back to the blog and post. Thank you thank you for always carrying us through!


Kathy said...

Thanks so much for the text last night to let me know about Princess Annabel's surgery.

I truly feel that everyone's attitude has so much to do with your love for your precious girl an being such a wonderful advocate for her, as well as Annabel's joyful, sweet disposition!!!

I also believe a lot of it is answer to prayer. You have many going ahead before you with prayer (as well as your own, Cathy!) to prepare the way and we know that God is all ready there.

So happy for Team Annabel to be back home where ya'll belong!!!

Love you girls!!!

Anonymous said...

Ok, I know that I am a big cry baby, but picturing all of the staff making a line to send her off just had me teary! That baby - or shall I say big girl :) - touches lives everywhere she goes.

In my heart of hearts I think she asked God for this mission before he sent her to earth. She doesn't even have any words, but has brought more people to their knees in prayer than any other soul I know. Our entire family is blessed beyond measure just knowing her, and all of you.

How can one little body radiate so much light?


Anonymous said...

The doctor said that is something you just don't see, a full trisomy 18 at age 6. I know every parent wants the best for their child, and every parent does what they can for their child. But I also know that the care you provide her, stregnth and your faith has kept this angel in our lives this long.
Forever in your debt
Edie and Ben

Laurie in Ca. said...

What a great update to read this afternoon Cathy. I am so thankful you were blessed this time around with new faces and sweet concern for our Annabel. God is using her in so many lives and you are His hands and feet to get this job done. I am thankful for you both and can't wait to read that you are all settled in back home. Prayers continue for you sweet friend.

Love and Hugs, Laurie