Wednesday, June 30, 2010

Three good days...


The last few days have been her best in a while. She has run a low grade fever almost daily since she was release from the hospital. Even though she now has a respiratory infection, I still consider the last few days her best. She has been able to stay on her formula feedings longer periods of time with less distention and retching. She has been sleeping better since Saturday night and I am so grateful.
Today was our GI appointment follow up to receive the results from all the testing when she was hospitalized. Since Annabel was placed on the TPN/Lipids she has gained 2 lbs. in one month. You can visibly see the weight coming on so quickly. They will adjust her TPN (20%sugar) and lower her Lipids (fat). It is too much weight to quick. So when the doctor walked in he looked at Annabel and we said the hellos, then he asked did you get the motility study when you were in the hospital. For all those that don't know this was the reason for the appointment. I could feel my face burning up. My sweet nurse said your faced turned so red. I have driven 2 hours to these appts. too many time for nothing. I was furious as I had called last Tuesday and was told the results would be in the GI's hands in 2 days. So 1 week later and he doesn't even know they have been done. Just plain crazy. Maybe with my age I just don't want to play their game any more. So with no results basically except for what we know about the dismotility we are to try to get her amounts up with feedings so we can decrease the TPN/Lipids. She has been on five mls. since the hospital. We did go up to 6 in the last 24 hours and will continue to try to go up 1 ml. per day. When she was in the hospital her liver functions were normal but the last two weeks have already begun to show an increase. TPN/Lipids can destroy your liver long term. This is something we are paying attention to since her liver has not been an issue. The GI dr. is suppose to get with the motility doctor who did all the testing and call us soon. I will try to get more pictures and write when I have clarification of what is really going on.
I do have a very sweet nurse named Rebekah that comes 3 days weekly. I am praying for at least one more, but her other families don't want to give her up. Friday night I will have a nurse that will come in 12hrs. during the night (3 nights) so that I can get my rest. I am trying my best to learn TPN and central line but I am quite nervous. But I do know I can do this, so hopefully by the weekend I will be doing this.
I am so sorry my writing is so boring and lacks any information. Annabel continues to be the joy of so many peoples lives. She has days she is incredibly tired but she still shine her sweet light and makes everyone smile.

6 comments:

Kathy said...

You may want to check your blood pressure sweet Mama!

So unprofessional and such a lack of respect for Annabel and you. I am so, so sorry you have been treated like this.

Praying for much, much better days ahead and all the help that you need to continue to give Princess Annabel all the care she so deserves.

Love you girls!!!

Laurie in Ca. said...

I am so happy to read that there have been three good days for sweet Annabel and I pray the rest from here on out are good ones too. You are a very patient lady Cathy. How frustrating to be treated like this isn't top on the doctors list:( We love this little girl and want God's best for her. My prayers continue for her and for you too.

Love and Hugs, Laurie

Penny said...

Oh goddness........... Sometimes life is just 1 step forward and 2 back! I would have just exploded I think!!!! Please don't worry that your writing is boring, information about incredible Annabel is never boring. I can't click fast enough when I see a new post. So glad she is feeling a bit better, hoping for her to get the info she needs on her study. Also praying for loving, caring, trained nurses to give you a break.

ANewKindOfPerfect said...

How infuriating! I can't believe the Dr didn't even have the results. I sure hope he calls you with them soon.

I hope that Annabel continues to improve and have good days. I can clearly remember the days of going up literally 1ml a day. The dr's told me that it was too small, that amount couldn't make a difference ... but if we tried to go up by 3ml instead of 1ml, all heck broke loose. You are doing good - slow and steady. TPN is hard on the liver, so I hope her levels remain okay as you work you way back up on the enteral feeds.

Hang in there ... I know it's hard, and it's impossible to imagine dealing with every day. But you CAN do it! :)

Kathy said...

Oh, Cathy, I love this picture. Your sweet girl is such a fashionista!!!

She proves once again that looking good can help make you feel better!

Hope today is one of those good days! Praying for wisdom for the medical people making decisions with you on her care as well as great help at home.

Prayers and many, many well-wishes are coming your way!!! Love you girls!!!

Anonymous said...

Thrilled to hear you plan to rest. I really hope this works out for you. God Bless

Edie and
Ben