Friday, May 10, 2013

Annabel's field trip...

 This is Annabel's new nurse, Rachel. We are so excited to have found her.  She will be our PRN nurse as she will still be attending nursing school. We have waited, sometimes not so patiently, but now feel the wait was worth it. We still have Rebekah, our very first nurse also but she is only working one day a week. Since Motherhood, she loves staying home with her little one and we understand even though we miss her. She normally come on Saturday. 

Earlier today she was entered into the 25 yard dash where she took 2nd place and the 50 yard dash where she finished 1st. This was a wheelchair push with her sweet nurse pushing her. Go team Annabel and Rachel.

Thursday, May 9, 2013

We now have a plan...

Vesicostomy vs. Supra Pubic Catheter...that was the debate at yesterdays appointment. Our urologist is a great doctor but is sometimes hard to get him to respond concerning Annabel. We have been very frustrated in the past with Annabel's UTI's but when she had the central line they seemed easier to manage with antibiotic IV. She has been infected since December with E-coli and they say she is colonized. I have just begun to understand that she will not get rid of this bacteria ever. They explained that once you are colonized you will always be. UGH!!! So several years ago the urologist wanted to do a vesicostomy. This is a procedure done where a little hole is place in the lower part of abdomen. There urine will leak out constantly so that her bladder is always empty. This also means that Annabel will be constantly wet. I do understand the thinking that she must always be empty but I can deal with the fact that she will constantly be wet. So there were two other procedures that I had researched for information. One was called a mitranoff (sp) and the other was a supra pubic catheter. The Mitranoff is a much more invasive surgery and it would basically give her a hole high up on her belly with a cover on it like her g-button. Then we would still have to insert catheter to drain her bladder during the day. The supra pubic catheter seems to be the easiest option and seems that maybe we can empty her more often without her constantly draining and her staying wet all the time.  This will have a tube coming out of the lower part of the abdomen with a clamp on it. This way we can leave her open to drain while sleep or at home. But when she is at school we can clamp and empty her every hour. Also, she has become very aware when a new nurse come to learn to cath her and she doesn't want anyone there except myself or my daughter. She does let our main nurses do this but someone new is very hard. I am proud of her for knowing that this is a new person and that she knows she can't trust them yet.
Anyway, her urologist strongly suggested the vesicostomy. I knew I would not be able to decide this procedure until I see if this supra pubic works first.
We have tried so many antibiotics that Annabel is becoming resistant to many. We also have to be very careful with her tummy and don't want the antibiotics to tear up her belly so therefore she wouldn't be able to eat in her g-tube. We have also don't prophylactic doses of antibiotic and she continued to have breakthrough infections. We have done antibiotic washes to her bladder which she became resistant to these antibiotics. She has been dilated twice to help her bladder drain, which has not helped.  According to the doctor we have exhausted all possibilities. I am thankful he listened to my request as to the option of the supra pubic catheter. I ultimately believe he is right about the vesicostomy but feel I need to do this other procedure first.
So sorry that was so long. Our last appointment was to be fitted for her mask for the bipap study she will have as soon as she doesn't have this respiratory infection any longer.
Annabel continues to go to school most days. She also continues to have her in home therapy. We have decided that she will not attend summer school but I am signing her up for vacation bible school. We do hope to spend much of our summer at the beach.