New Medical Information

This is what is going on with Annabel medically. The UTI's  are continuing with maybe only 24-48 hours after her antibiotic course is complete before it reoccurs. We are now working with Infectious Disease at Texas Children's Hospital. We have been with them for about 3 months now and in the beginning they seemed to have much hope that there were antibiotics out there for Annabel that could fight this bacteria that comes back so quickly. Two weeks ago we went in for an appointment and we knew Annabel was infected again just two days after finishing her recent round of antibiotics. So the doctor wanted a urine culture and some labs. She also placed her on Keflex until her surgery on July 15th and then one month after. This Tuesday I received a call from her doctor who had given us hope concerning her antibiotic use. In my heart I knew the Keflex wasn't getting the infection because Annabel was uncomfortable during the night and wasn't sleeping well.  She began to tell me how she was going to have to change the Keflex and how she was not even sure what would work anymore.
She said that with every antibiotic given the bug just get stronger and that her fears are that soon we won't have anything to fight this bug. We know she is colonized and will have to do everything to keep her bladder drained. The upcoming procedure is the supra-pubic catheter. If this doesn't work, which I have been told there is only like a 10-15% chance, then the surgery I have put off for years will have to be done. This is called the vesicostomy. I have dreaded this procedure because Annabel will have a wet diapers all the time. She doesn't like being wet, never has. Also, from comments from other moms is that she could also wet her care givers.  The last surgery being explored is to remove the bladder completely. There isn't much finding on pediatric concerning this surgery but there is in adults. It will be a very difficult surgery as we have been told. We feel blessed to have this new Infectious Disease doctor who is young and energetic and doesn't mind seeking help from all over the country.

This past Thursday Annabel saw a doctor specializing in movement disorders. Annabel has been having seizure like activity for a while now. They have been on the increase in the last month and we had seen her current neurologist for these. Even though her doctor didn't see them in her office, we had supplied video. So a few weeks ago they ordered her an EEG while we were in her office. She was hooked up for about 2 hours and we believe what we thought to be seizure like activity did occur on at least one occasion. So the EEG was read and was report that Annabel was not having seizures. We were so relieved. I felt that this was due to some sort of pain in her abdomen or maybe her constant UTI's. They also seem to increase after she received her botox treatment for her teeth grinding. After sending videos to the doctor who had administered the botox and were told they didn't believe this to be a reaction to botox. This is how we  came to meet this new movement disorder doctor. So Thursday after showing her the video so wasn't really sure if it could be something called Sandefur's syndrome (basically reflux that has really damage your esophagus ) or that maybe it was truly seizure that weren't picked up on the EEG due to them being deep brain seizures. If anyone know me I won't medicate Annabel just because someone thinks something and I won't leave her on meds unless there is conclusive evidence that the meds are working. About that time Annabel's nurse told the doctor to look at Annabel and she was beginning what we call her seizure like activity and followed up with about 10 more. They doctor called these clusters and changed her thinking that it was Sandefurs syndrome. She is almost sure these are seizures after seeing eye deviations, muscle tone changes, etc.  As much as I was struggling with the fact that these could be seizures it came to my mind that maybe this was a God thing. God knows I would have to have black/white evidence to medicate Annabel with seizure meds.
The doctor began to review her EEG and said after seeing all the abnormal brain activity and the mis-firing that was going on in her brain she would be shocked if these weren't seizures. I told her how we felt sure she had one of these while hooked up a couple weeks earlier, and she told her she has had many patients that are truly having seizure but they can't catch them or that they are just too deep.
So I asked her what she would do if this was her daughter and she said she would begin meds right away. We talked about some of the side-effects and decided to begin on now that was a very small dose and after a week up it. It will still be a small dose. Then another seizure med that we will use when they are coming with so many a day. She is sleeping much of the day and this is what I dreaded but I have been told her body is having to get use to them.

Other than this Annabel has attended two vacation Bible Schools in the past two weeks. One was at our home church another was a Baptist church here in town. She had such a great time and her nurse was able to attend with her. I am so thankful for the new friends Annabel met while attending.

This is Annabel with some friends who came to visit.

She continues on with her speech, OT and her PT here in our home. Annabel is staying very busy and we will be spending some of our summer at the beach. We continue to be thankful for our same sweet nurses. Please pray for Annabel that her surgery will go well and that she can be on the smallest doses of these meds for seizures. We adore her sweet personality and I understand many of these drug can have an effect on the personality.

I am hoping to post very soon about Annabel's Make-A-Wish gift that maybe arriving this week. I think I am figuring out this computer finally.

Annabel waiting for her craft activity at VBS

Playing on her mat prior to therapy

Annabel on beach time....

A toothless Annabel

Isaiah and Rebekah came to visit with Annabel

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. 

 

The rest of the photos are from Annabel's field day. This is the bowling ball push. She truly looks like she is enjoying herself. I haven't heard how she finished in this activity.

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.

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.