Saturday, December 4, 2010

Family..Best Medicine Ever

Tonight as I sit in Annabel's hospital room with color twinkling lights, listening to Christmas music, smelling my new Christmas Sentsy Candle I am so thankful for my family...
Today was a day that I didn't sit and dwell on medical issue, fighting for everything Annabel needs, or thinking about tomorrows and the what ifs....
Today was a day spent with family. It was also a better day for Annabel. She thrives off the attention and interaction with her brothers and sisters. Today Tara and Colette stayed with her while Carly and I ran to Target. Our goal was to bring so Christmas to this hospital room. We brought decorations to hang from the ceiling, Christmas clings to put on the glass in the room, twinkling colored light for Annabel to look at, a Christmas stocking for Annabel, a welcome mat for all who enter her room, Christmas CD's and Christmas DVD for Annabel to watch. We probably made too much noise today in her hospital room but we had so much fun. Tyler had his drill in Houston this weekend nearby and was able to come spend the day with Annabel also. Derek and Mel took in the Rice vs. Lamar basketball game and then came by to visit. Thursday was Tyler's birthday and since we were not home to celebrate we decided to go across the street from the hospital for dinner. Thank you to Tanya who drove over from her parents home to watch Annabel. It was so nice and just what I needed to be able to be with my family at this time. As we came back into the hospital lobby, a familiar face got up to approach Mel and I. We realize we had not seem him in many years and he had taught a few of our children when they were younger. He looked at our large family and he said are these all your children, I smile and replied yes they are! No mother could have been prouder...
When I began this journey with Annabel, we thought it would be so brief, days , weeks maybe a month or two! I brought her into our home willing to do this all on my own, meaning care for her. I didn't want them to become too close to her, didn't want things to disrupt their lives by me not being there for them, basically didn't want them to get hurt. None of us imagined her sweet life would have been so long! None of us thought we could have fallen so in love with someone so little. Annabel continues to have this amazing hold on all of us that make us come together even more. She is truly the glue that bind us together.
As we enter this Christmas season, I feel so thankful to everyone who continues to pray for Annabel. I truly think of everyone lifting her up to Jesus and praying for her. It is so comforting to know that when I am lazy, tired or just plain forget that all of you continue to do so..

Better day...

Annabel has had more good moments today and for that we are thankful. So many things are being talked about that my head keep spinning. Also the fact is that a teaching hospital so many doctors come in and out and make changes or have opinions and they just don't all agree.
Seems like the blood infection is staying status quo. We still don't have a culture that has been clean for five days. We have one that hasn't shown growth for two days but the need 72 hours with five clean cultures in a row. Her fever hover most days around 100.5. So I think the antibiotic is keeping it in check. They have taken her off the dangerous antibiotic and now she is on flucanazole (sp.) The plan is that she must have 5 clear cultures then 21 days of antibiotics. At this point we have surgery for her central line on Monday around 1 p.m. if culture wise she is clear. We are hoping to be transfer back to our home hospital and be under the care of Dr. B. If she feels it is possible maybe discharge with our nurses giving the IV antibiotics at home.
Some of the things that we didn't know when we came here were some very elevated levels of bile acids, GGTP, Bilirubin, other words like Bili Conjugated, Directs, etc. Also her electrolytes have been wacky and according to the doctor not in the way they expect. Until I can hear what they are say a few more time I am really confused. I have made notes and i am sure by Monday we will be meeting again. We had a meeting with the doctors last night and talk was about transplants, her not qualifying and what our plans were if these things progressed. Now, this is them talking and me still processing. We know her levels have been changing with the TPN/Lipids but they haven't ever been what they are now. I am praying that this infection just got her really hard and the antibiotic is hard on your body also. If I can I hope to post pictures tonight. The entire family came to Houston and we are having dinner across the street quickly while Tanya sits with Annabel.

Thursday, December 2, 2010

Annabel's Kindergarten Class...

I told Annabel to smile to her class in this picture and she did. She misses everyone and loves Regina Howell!
Hi Mrs. Eaves! I wanted to say thank you for writing to myself and Annabel. Please tell the class how much Annabel likes coming to visit the class and that she cannot wait to return. Also, please tell them how much we appreciate how sweet they are to her each time she visit. Thank you for following her blog and for all the prayers sent up on her behalf. Praying that your class will have a wonderful holiday season and Merry Christmas!

Thank you to all who visited me these last few days and many who have offered. Kenzie came by to see Annabel and came bearing gifts for Annabel and myself and we had a good visit.
Also last night Loma and Lanny came from Beaumont and also, Dr. Pam and Stacy. Thank you all for taking your time to come see her. Also for the offers for dinner and for bring me dinner!
To Michele who I failed to get a picture with who brought me 3 meals and many extra goodies.
Also to Nick who came to see Annabel and brought her a precious teddy bear. Thank you and didn't get a picture with you with Annabel.
All the visits lift my spirit and make Annabel smile. Also all the comments on the blog, facebook, email, text,and calls are priceless. What a wonderful praying world we live in and so many people all over the world that pray for her! I have a feeling tomorrow will be a good day for Bella!

P.S. The first 3 pictures are from yesterday when Annabel was having a good day. Today was tough as were the other days before. But we are so thankful for anyday especially when she smiles!


A very patience and caring man help Annabel this morning. It was very deep and painful for her but for now we have a vein. We aren't moving her as to not disrupt anything. The very nice man is going to come back around 1:00 an attempt another one in her other arm inside in case we lose this one again. They are wondering if between the tpn and this antibiotic that it is hard on her veins. They are choosing the antibiotic now which has to be given over 6 hours.
At this point she is back to how she was when admitted with not much response. I feel sure once this gets started again we will get to see that huge smile. Thank you for continued prayers.

No IV's antibiotics tonight

Annabel did have a better day for a while, with visitors and smiles. We are thankful and I will post pictures tomorrow. The day ended not so good with much concern from the doctors. She lost one IV yesterday and three today that were so hard to get. No one in the hospital will try tonight. Tomorrow we are praying IR (Interventional Radiology) will get her in first thing for access. Until she is 5 days without yeast in the blood stream no type of central line can be placed.
I appreciate all the prayers but please continue til this yeast is out of her blood. I did get some great news from home that our doctors will take us back to our home hospital if Annabel becomes stable. With the holidays and the thought of 21 days of antibiotics that can only be administered in hospital it is nice to know we maybe could be closer to home. Also the 21 days can't begin until she is free of yeast in blood for 5 full days, then they begin counting.

Tuesday, November 30, 2010

Sleeping Beauty...

Sorry about the entry earlier but I was trying to do something from my phone and obviously I don't know how to work it.
Annabel had been doing fine. The holiday were great with all the family around. She began to get sick after going to be on Saturday night. She woke a few time with vomiting, fever and chills. I did try to pick her up and take her to the hosptial but each time she threw up more. So around 1 a.m. Sunday morning with her fever 102, I realized with the central line I needed to go to the ER. They did some testing and it was decided she had a positive strep test. They gave a round of IV antibiotic and then a prescription. I knew the ER had done a blood culture through her line but wasnt' worried because we haven't had an infection in our line ever. We were released and returned home at 7:30 a.m. She continued to sleep til around 4 p.m. and by 5:p.m. the hospital called and said she needed to return right away. It was easy to go there because that is where her pediatrician go and it is close to home.
She continue to sleep, have fever, vomiting and a culture that showed yeast in her line. We were still praying that the yeast wouldn't be found in the blood stream. Yesterday afternoon it was decided that her labs were headed in the wrong direction and that we needed to be transported to Houston for removal of this line.
We arrived at 10:00 p.m. last night and have become a human pin cushion. They did get a culture that showed yeast in the blood and schedule her for surgery to remove. She did as well as can be expected and then they took her for ultrasounds of her abdomen. I haven't even talked with a doctor yet about labs or other testing. Upon arriving here in Houston she was yellow (skin tones) and the white of her eyes are yellow. Her levels are crazy and hope that tomorrow they will tell us what all this means.
In surgery they got one IV which they needed two. With 3 antibiotics to be administered and tpn to be given, daily cultures to be draw we need more vein to access. I am hoping vascular access can come in tomorrow morning and find veins. at this time they cannot place another line until clearn blood cultures begin to return.
Thanks to all who continue to follow her journey.

surgery now...

Yeast in the Line...

Just want to say quickly that Annabel was admitted Sunday to our hospital at home which we love so much. Last night she was transferred to Texas Children. She has yeast growing in her line and we are waiting for her peripheral IV line culture to see if it is in the blood in her body. We are praying just in the line. They are beginning 3 new antibiotics since arriving last night. Prayers are welcomed for Annabel and also for her mommy who was a little testy on arrival last night. Many mistakes/oversights were made and I need to take a breath and have more patience.
The best part was that she was awake on the ambulance ride to Houston and we haven't seen much of those eyes since late Saturday night. The fever this morning seems lower overall and the vomiting has decreased.
They are saying the line will come out today, but have heard that before here and we sat for 2 days with no one agreeing to pull/or not pull the line.
Thank you to everyone already for your prayers over and especially to Dr. B who was there at the hospital to admit Annabel Sunday night and to Dr. Hubbell who was there most of the day yesterday making sure all went well for her.
We will update when we have some results.