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 I have read on two accounts that this is an outdated procedure and that its success rate is not that high.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.

16 comments:

Mrs Redboots (Annabel Smyth) said...

Thank you for your very kind comment on my blog this morning.

My heart goes out to you today - far more, in one way, than to Annabel, as you are the one who has to make the decisions about her care, and that must be so hard.

I'm so glad you're able to get a 2nd opinion about her bladder worries - after all, as she is showing signs of readiness to be toilet trained, it does seem a shame to condemn her to always having to use nappies (UK English for "diapers"). I hope this new urologist will have some better ideas.

She continues in my prayers, as do the various premature babies I pray for - one of whom is doing so well he's more than doubled his birthweight and may go home soon. The other, sadly, will go Home instead..... Will add little Isabella to my prayers.

The VW's said...

I'll be praying! I pray that this new doctor will be more helpful and that he will have a better plan for Annabel. As you said, there is peace knowing that God's hand is in all of this!

ANewKindOfPerfect said...

We are contemplating the same exact surgeries right now. The mittranoff (I know I butchered the spelling) and the vesicostomy. I wish we lived near each other, it would be great to sit over coffee and cry about this to someone going through it!

That other surgery is outdated from what I've read, and rarely done anymore. I am SO glad you are able to get in with the other urologist before surgery!!

Annabel is of course in my prayers, as you are as you make these tough decisions.

Susan and Michael said...

We will definitely keep you all in our prayers as you try to make these difficult decisions.
Love,
Susan Brewer (Allie's mommy)

Bonnie McElroy said...

I am the volunteer executive director of Pull-thru Network (website - www.PullthruNetwork.org) and there are a many members in PTN whose child has had either of these procedure and also deal with the bowel issues. Feel free to call or email me and I will help as much as I can. At the very least I can offer you free PTN membership so that you can connect with other families who have been where you are!

Bonnie McElroy
PTNmail@charter.net
205-978-2930

Laurie in Ca. said...

You know that I am not familiar with any procedures but you know that I will be praying for every decision that you will be making. I am amazed at the two appointments that are so close together here, and I see Gods hands all over this. Praying for you my friend and Have a most wonderful Mothers Day!! You are the best!

Love and Hugs, Laurie

Kathy said...

HAPPY MOTHER'S DAY CATHY!!!
You are the best!!!

I am very happy that you getting in to see the other urologist. A woman may better undertstand some of your concerns. I am praying for some better options. I don't relish the thought of Annabel's little bottom always being wet especially when she was so proud to be "going" on the potty.

Will be praying for divine guidance for you and the doctors as always and I know so many others will be too!

Am home now and so glad to be "back in the loop" with you girls, but missing Avery terribly. After two weeks of full time care for an amazingly active little guy I have even more appreciation of all that you do mothering for Princess Annabel!!!

God bless you, Cathy, and give you wisdom, peace and rest in Him on this Mother's Day and every day!

Love,
Kathy

Aimee said...

You don't have to beg! I will pray!

Krystal said...

So glad you can get the second opinion soon!!!

I'll be praying for Isabellaryan.

May said...

Happy happy belated Mother's Day Cathy! My laptop is down so I'm on outside connection. You inspire me so much as a mom with your unconditional love for Annabel. Thank you! Btw, the brand of the piano (Bri's) is Vtech. You may find it at toys r us.

Rebekah said...

I think a second opinion is very important. Why can't this doctor at least consider other options? It breaks my heart that he would think that Annabel's life has no value. :( Grr.

The VW's said...

Just learned that it is your birthday today, so HAPPY BIRTHDAY!!! I also learned that Annabel is being admitted into the hospital for hydration. This is not a very nice B-day gift! I'm so sorry about this! I'll be praying for you guys!

my3sons said...

Happy Birthday Cathy! Still praying for sweet Annabel.

Katie said...

happy Birthday Cathy! I hope that you had a nice day. Happy belated Mother's Day as well. Continuing to pray for sweet Annabel. I hope that she is doing well after getting re-hydrated!

ANewKindOfPerfect said...

Happy birthday Cathy! I hope that Annabel is home soon.

Anonymous said...

I am very glad that you are getting a 2nd opinion. I work with medically fragile and technology dependent children in Toronto Ontario and from the experience that I have had with the blessing of these children I would not recomend the surgery as it is VERY outdated due to the fact of it NOT being reversible. Many doctors are very ignorant to the fact that individuals with disabilities can and do live VERY productive and HAPPY lives. Doctors generally do not receive very much training with regard to disabilities and often make choices that do not benefit the individual. I will keep you in my Prayers...