Please pray...

Annabel is again in much pain. We were in the ER early hours of the morning and they were so quick and attentive. I am so appreciative when they see us enter that we are whisk right back to a room, doctor in immediately and xrays, labs, urine drawn. The abdominal xray isn't conclusive, could be illeus, obstruction. She isn't distended at all and very little movement or sounds. We can't sit her up at all without so much discomfort and vomiting. Shows positive for UTI but not a big one, and basically she is always positive. We know when it needs to be treated and at this time isn't her issue. They are taking cultures to see if infection in her central line due to fever and vomiting. I am so praying that she doesn't have another infection or I may find myself wanting to pull this line and never put one back. (That is just an emotional response.) So the doctor said he didn't have a clue as to what to do and said we could be admitted or go home and see our pedi in her office today. Well we just saw her and Annabel barely made the trip there. She was in so much pain and then vomited while Dr. B was examining her. She was leaning toward the pain being from cramping and going to give med to address this. When she vomited she is leaning toward illeus/obstruction. So she doesn't want any medicines going into her gut until she sees us again. She gave us the option to return home for awhile and if we can make it til tomorrow she will recheck, if not back to hospital. I am so blessed to see how they trust and try to do everything to keep us out. We love our hospital locally, but know with our wonderful nurses we need to stay home. I don't like to ask for prayers unless she is critically sick but today the pain is great and I appreciate them.

Central Line Dressings???

We are having so much trouble with Annabel's central line dressing. Any bandage we have used so far is causing her skin to have issues. She claws and scratch at the bandage and she has never been one to scratch. I have contacted our company that supplies her TPN and have been told this is all they have. I am including a picture of the best dressing for her site but again it caused problems with her skin. The one in the picture is called Sorba-View. Other bandages have been tegaderm (sp?), IV 3000, Medipore plus Pad, and one that comes with the dressing change kit. I was hoping that making this post maybe some of you that have central lines would have some other ideas. So please, if you know of any other solution please let me know. My email is suzyque92@hotmail.com
At this point we are doing daily dressing changes and that is not good. When we began it was weekly then a few times a week and now more often. You don't want to do changes often due to infection.
Thank you to everyone who reads and prays and I know this post won't be for everyone.

Happy New Year...

To all we wish a Happy New Year. Prayers are for your health, happiness and peace. Our New Year was very quiet. Mel and I went to eat around 5 p.m. and right back home. Our nurse Debbie was leaving at 7. I am not sure I have seen New Years in the last 5 years, probably since Annabel. But maybe early on when she was ill or having a feeding. I haven't stayed up intentionally in a long time. Hoping all of yours was peaceful.
Annabel did finish the IV antibiotics but was only off a day or so then had to begin another one for a UTI. After about 5 days of that again she wasn't feeling well and was crying out much of the night so then she began another one. She has had a low-grade fever for weeks now. Fever for Annabel was rare prior to this central line but now she seems to always have a low grade fever. I will now be grateful that it is low and she doesn't spike another and develop a line infection.
This December seemed stressful and hard for me. (I realize it isn't about me, though). I am so thankful that we were able to stay home from the hospital and maintain Annabel's care here. I owe so much to my three nurses, Rebekah, Debbie and Ashaunti who made this possible.
Today was a better day for Annabel. This photo about was taken today when we decided to take her out for some sunshine and to try to ride her new bike. We were only able to stay for a little bit as the wind was cool for her. She seems to have much less mucous, less coughing and gagging. Her night last night was almost perfect in my book, only waking to be cathed. Since Annabel has been placed back on her Robinul she urinates very little. This is one of the not good side effects of the Robinul. We had to get back on it due to her basically drowning in her mucous. She now, though has become very distended. Have psuedo-obstruction it is so hard to know when you have a real problem or something to just work through. She has had a suppository and 2 enemas to try to relieve her with no results. She just returns the water back but no substance. The other crazy thing is that her feeding tube is returning something red when we vent her. She has only had blood come out of the tube after placement or after her 3 Endoscopes. But she hasn't had any of these things. She does become uncomfortable at times but is so playful at other times. We have enjoyed seeing her smile back and will cherish her feeling well.
She hadn't been out of her jammies or out in a while so today the nurse and I took her to eat some lunch. Yes, I did mash some black-eyed peas and give her a taste. I guess I don't really believe in Luck just prayers but I am willing to chance it and hope for some luck with many prayers this year.
I can't begin to tell you how many new friends and old friends continue to carry us through our hard times this years. I feel your prayers lifting us up and will continue to be ever so grateful to those that continue to follow Annabel's journey.