Monday, July 28, 2014

Recent pictures...

 The photos from above are from this past week. Annabel was bleeding again out of ostomy even though not as bad as the beginning of the month. So we went in again for a scope and also a scan to see the blood flow that was getting to her bowel. Some of the words describing her bowel have been friable, necrotic,and ischemic???

 These two photos are from home where she is most comfortable in her bean bag. Even though for her scoliosis, kyphosis she needs to be sitting in her special Rifton chair. These days Annabel is very uncomfortable sitting up. Also Annabel is holding her nephew Flynn. This is Derek and Linzy's first baby and our First Grandchild. She is very gentle with him.
 This was the first of July when she had the major GI bleed and was so ill. Annabel tolerates very little in her tummy so they place her on NG suction in the hospital. It hurts this momma so bad when she retches so many time a day. They have converted most all of her meds to IV as of late. It is easier on her but I still get so nervous having to access her lines so often. After this hospital stay Annabel came home on 4 IV antibiotics, which meant accessing the lines 12 time daily for antibiotics alone, the 4 times for benadryl, 2 times for zofran, 1 for protonic and then up to 6 times daily for pain.

 Here is Annabel enjoying some therapy time. When she is feeling well, we try to sit her up and play with her balls. She loves to throw and will catch over and over. How it warms my heart to see her so happy and feeling better.

 Not such a great day for Annabel. We love spending time at the beach and in the past love to swing and rock on the porch. It now makes her sick so we just sit out and enjoy there breeze.
 This is Annabel on one of her good days with her therapist Meg. She sure loves Meg... On a great day we can get Annabel to bear weight.

These two photos above are our Grandbaby Flynn David. How we adore our first grandchild and Linzy and Derek are more than generous with allowing us grandparent visit. It pays to live right around the corner. he is really beginning to smile and he is a very good baby!

Tuesday, July 1, 2014

We need answers and a plan..

Annabel is inpatient in Houston. She has had ongoing pain and vomiting. She has had small amount of bleeding out her button when we vent her. But Sunday she spiked a fever at the beach and began vomiting and was in pain. We left right away for our home hospital where she began putting large amounts of blood out her ostomy.  That is what led us to be transferred to Houston. Fever improved, they placed a ng tube into her stomach and this helped with her vomiting.
She does have an infection in her blood, the scoped her and her bowels are described as severe and friable. The next few days will tell us more as to what is going on with biopsies. Thank you that you keep reading even though I can'tseem to sit down and write out my words.

Thursday, June 5, 2014

Where to start.....

Please forgive me for being away. So many have stood by our side for so long with your constant thoughts and prayers. So many times when I updated it was through Facebook, mainly because it was quicker and easier. I love to post pictures and I was having so much trouble on my new apple computer and just became frustrated.
 Tonight I couldn't get a signal on my computer where it is easier to type so this update will be brief.
In October Annabel had her total colon removed. After this she had 5 very successful weeks of eating through her g-tube. She continued to live life free of a central line until this past Dec '13 when her stomach totally stopped working. The first of January she had her central line placed and continues to struggle with eletrolyte issues, obstruction issue! vomiting and dumping. She is suffering ongoing liver damage. She is having to be placed on almost all IV medications due to intolerance of the smallest amounts going into her g-tube.
If any of you still follow her blog and are also on Facebook, please message me and you can see more pictures of Annabel.
We are having some tough conversation concerning Annabel's plan of care, basically to keep Annabel as comfortable as possible. This isn't anything definitive yet but I will try to recap the last several months and get my daughter to help me post updated pictures of sweet Bella!