Friday, May 8, 2009

Anyone ever had....????

any of the following procedures??? Annabel has continued to have too many infections with the clean intermittent catherization (CIC). Her last illness in the hospital is believed to be due to the constant use of antibiotics. It was a bacteria call c-diff and due to the severe dehydration she became terribly sick. Her pediatrician does everything possible to keep her off antibiotics but sometimes nothing else can be done short of another type of procedure. Two facts that are known is that Annabel has a neurogenic bladder and that her bladder is very large (due to the amounts of urine she retains).

Her pediatric urologist is proposing that she have a urethral dilation. This supposedly will allow her bladder to constantly drain the urine out into her diaper so she will always be wet. This procedure doesn't require an incision. But she would have to be put to sleep. The downside of course is that she will always wear diapers, smell of strong urine, and have a wet diaper. I have read on two accounts that this is an outdated procedure and that its success rate is not that high. This is the only procedure he will consider and when I question him about the other two procedures he just says he is only going to do the dilation. He says if it isn't successful the first time we can always repeat it. HUH???

There are two other options I would like to discuss but he just shuts me down. One is where an incision would be place in or near her belly button. I believe this is called a Mitrofanoff. It would have a button similar to her G-button used for feeding. We then would cath her through this button to remove her urine. It would surely provide her more privacy and people other than her family would not have to be involved in her private area. I realize the downside to this is the incision and of course she would be put to sleep. I have heard there is a high rate of success with this procedure.

The third option is a small incision in her lower abdomen area where it would allow the bladder to constantly drain into her diaper also as the dilation procedure. I believe this is called a vesicostomy. So the downside is the incision, wet diaper, smelly urine and always wear diapers.

I have been saying I would make a post about her necessary surgery that would be coming up. While in the hospital for the c-diff, bi-pap it was also found that she has a very large, loopy and lazy large bowel. It is becoming a dumping ground and leaves her full of air. This problem didn't just appear overnight but has become much larger than her last scan a while back. They say it must be removed. It is a major surgery according to her doctor. He says on some it may be possible to do it laporscopic but not what he will have to do with Annabel. I really like this surgeon as he talks with me about if I do or if I don't do something. I trust him if he says it must come out. Also he is willing to work with Annabel's urologist to have both procedures done while asleep and she will be open already. She will obviously suffer more pain from the bowel surgery and have a longer hospital stay. So the reason for not doing the later two procedures due to her having to have an incision become a mute point. She will also only have to be put to sleep once and not be administered pain medication at another time.

In the past we have had differences with our urologist. I have stated he is a great surgeon and that is important. But the fact is he doesn't see much use in Annabel's life (this has been said concerning her T18 diagnosis). I have tried to make an appointment with another urologist there at Texas Children's but it has always been 9or more months away. Yes, I should have just made it and waited. She really needs a urologist that is affiliated with a large Children's hospital with all of Annabel's other issues. A year ago when Annabel was in the hospital here locally and we needed answers I called him and he just said he didn't know what else to do. I ask him to please just tell me if he wanted us to seek another doctor (I don't like to dr. hop) and he said he would try one last thing. It did work for a while, but of course this was something I had been asking him to try for 8 months prior and he had refused.

This is where I see God's hand in all of this. I have been struggling with what to do for the last couple weeks. I don't know if I have ever been so emotionally drained as I have been feeling lately. I truly have been feeling I just don't know what to do for Annabel. So yesterday I looked up this other urologist who before was going to take forever to see. I just felt I needed someone to tell me that what her urologist is proposing is the best for her, or possibly one of these other options was better. At least to help me understand all of the options and how they would affect her in the future. I made the call and they told me we could have an appointment on May 20th. I truly couldn't believe it!!! I wanted to cry and I couldn't thank her enough, but of course, didn't want her to think I am emotion wreck. Her bowel surgery can't happen until at least June 9th. So I will be able to see this new urologist prior to the surgery and hopefully be at peace with whatever the decision maybe. The urgency to the urinary decision is that she can't really be on antibiotic to the degree she has been requiring to stay free of infection.

DISCLAIMER: Please know that I do not have medical knowledge past what I have heard, been told or read. I can totally misunderstand all or some of this. So please if the facts are wrong, I don't mind being set straight.

Whew, so sorry for the long post! With all this said if anyone has experience with any of these procedures or just information to share with me I would appreciate it very much. If you are not comfortable with making a post/comment on the blog then my email is suzyque92@hotmail.com

This post is not being made to say anything critical about any doctor. They all have their opinions and we have the right to go elsewhere. It is just so hard when you have a child with so many issues to begin over again. We have done this before, but it is best to not do it unless we have to. There is not a doubt that all our faithful friends will be praying that with the help of these doctors the right decisions will be made. When we have a definite date I will let you know so we can all be stormin' Heaven's doors with prayers.

And here I go again begging for prayers(I know I don't have to beg). Annabel has a new little cousin that is two weeks old. She was born and weighed only 1 pound and 8 ounces, 12 inches long. Can't even wrap my brain around how tiny this is! Obviously, there are lots of issue she will be facing but at this time she is doing as well as can be expected. I am trying to figure out how to link her on this blog but her site is caringbridge.org. Her name is isabellaryan and it is typed all together. They are a precious young family with a cute little boy also. Please lift them up in prayer that God will give them wisdom and strength to carry them through this time.

Thursday, May 7, 2009

Annabel at speech therapy...

Annabel loves her Ms. Carol, her speech therapist. She works very hard and she stays very focused(unless the camera is around, as you can tell)! Most of these games involve music. Annabel loves music and she loves to clap! One of the games involve a monkeys face and Annabel places cookies, french fries, pizza, apples etc. into the monkeys mouth. Another game involves bubbles, up in the air, on her nose, on her toes, etc. One involves the puppy, he can roll, he can run, he can jump..., the other is saying HI to many objects called HI TO YOU! She loves to play with her puzzle. She has to remove the piece Ms. Carol tells her, such as duck (trying to repeat the word), apple, puppy, boat, etc. After picking each object and handing it to Ms. Carol, then she must pull this scarf through the whole to reinforce the object. When she began this game with the puzzle, besides not knowing the objects, she couldn't pull the scarf through the hole. (She has a weak upper body) She can now pull it through each time with her right and left hand.
We really don't know if Annabel will ever be able to communicate through speech, but one thing we do know is she tries very hard at learning. She stays focused and works so hard when she is feeling well. We are certainly grateful for Ms. Carol and all the love and support she gives to Annabel and our family.

Tuesday, May 5, 2009

National Nurses Week...

My favorite school nurse!

Annabel's school is celebrating nurses day tomorrow. Her nurse faithfully goes into her classroom and caths Annabel. As you can tell Annabel like her school nurse. I am so blessed with a great school and a wonderful staff that watches out for Annabel. I do believe the highlight of Annabels week is going to school. She enjoys all the stimulation and activity that surrounds her. I am already beginning to worry about summer and how I will keep up. The first picture is of her school nurse.
The following pictures are just of her week. She has some good days where she is very energetic and some days where she seems exhausted. But hey, don't we all. I will be making a post soon about her upcoming surgery. Unfortunatly, the bowel resection cannot be avoided.
Waiting to go to school.

Ms. Shan playing with me.

Annabel visiting with Dr. T; her neonatal doctor.

Audrey giving Annabel good morning hugs.

Cupcakes anyone?

Hmm...
Want to play pat-a-cake...

My big sissy Carly.

My big sissy Colette... doesn't she look like Carly :)

Sunday, May 3, 2009

Happy Birthmother's Day...May 9th

It is sad to say that this is my business and so much of my life, that I am ashamed to say that I was not aware of this special day coming up. I thought I would make a post and maybe others who are not aware of the special meaning to this Saturday, the day before Mother's Day. Tonight as I was reading our local newspaper there was an article about Birthmother's. Even though some may have children now, they really never felt very good about being honored on this day. So a group of birthmother's joined together and decided that the Saturday prior to our so called Mother's Day would be Birthmother's Day! God bless these group of women who felt empowered to speak out and do something to honor themselves and so many others. The article says that the group of birthmothers come together and light candles and read stories and poems. Things have changed so much over the years.
I know you have heard me mention Tammy, Denise, Karen, Melissa and Amanda in prior post. Probably, I do not give them enough credit. My dream one day is to sit side by side with them in church on Mother's Day with my children and let them know personally how special they have blessed my life. Yes, they do know because we have met or talk on the phone before. Sometimes I want to publicly acknowledge them because in our society they can but not always be looked at in a negative way.
Please if you know of anyone who has made the sacrifice to give their heart and their child to someone else, please let them know how special they are this Saturday. They may not even know this is THEIR day, it is fairly new. If you don't know anyone personally, then maybe just offer up a prayer on their behalf that what ever they are feeling will be positive and let them be overwhelmed with the feeling of what they did has blessed others.
Again, if anyone is reading this blog and knows of anyone that is a birthmother you could leave a comment blessing that person (you don't have to mention names, you can just mention initials.) It could just be a special blessing sent their way.
If you are a birthmother reading this, know that whom ever you have blessed loves you for the gift you have given. I can only hope that you as a birthmother feel a healing and wholeness in your heart for the life you chose to share.
SO TO ALL BIRTHMOTHERS THIS SATURDAY: HAPPY BIRTHMOTHER'S DAY!!!!!!!!!!!!