Thursday, February 25, 2010

Just unloading...

I truly feel so blessed that I don't know how I am about to start my whining again...Sometimes I think I whine because I am inconvenienced, or don't want to do something! But most of the time I really don't like doing these things to Annabel. Her surgery was done on Jan. 8th and we slowly decreased catherization. Just this past summer we were told that she needed urine residuals under 30. Well since her surgery in Jan. for the tethered cord thing she had been urinating very regularly and most of the time 3 times during sleep. (Annabel doesn't like to be wet or dirty, so she makes a noise right before and right after wet/dirty diapers) During her last hospitalization a few weeks ago it was found she had another UTI (only 1st since surgery in Jan.). She also had some sort of respiratory infection that zapped her oxygen and we are still struggling with this mostly during sleep. Her energy level has been great, sleeping well and just a happy funny little girl. I must say I have been enjoying the lack of having to cath her every three hours, worrying about being at a clean facility (restaurants with changing tables), about strangers having to cath her who may not make sure she is clean (I am just extremely hard to please) and the biggest single issue is that what I am doing to her, her tissue and possible introduction to these bacterias.
So that brings me to Tuesday, Feburary 23rd, our 6 week check up post op. I went in to the appointment for the renal ultrasound and appointment right after with Dr. J (urology). She is standing straight up with my help looking so strong and he opens the door and says, Wow she looks great, How is she doing??? I reply, Really well, she has many wet diapers. He says, how many times are you cathing her?.. I reply, NONE and I am loving it. He asked a few more questions and says "NO INFECTIONS????. I reply, Only one and show him the lab results (what the bacteria was, counts, etc.) He looks at me and says, "You need to be cathing her four times daily." He continues that she is a breeding ground for bacteria. I told him after the surgery he residual were low and that I thought as long as they were under 30, that was good. He says she must have ZERO (0) left, that she must be drained.
Here is where I am whining! Families are told each day that they have way worse diagnoses or time left with their little ones. I have time with Annabel and cathing is not that terrible. Yes, I don't want to do this but will. In my heart, I don't think this is best right now for her. I understand his thinking but I just don't want her going through this. I am 50/50 thinking if I don't drain her dry she will be this breeding ground for bacteria, but the other side is that I will continue to introduce (no matter how careful) more bacteria. Because of her history with c-diff, she needs to be on as few antibiotic as possible. This last one that she came home on tears her little tummy up but it has been the only one as of late that she is sensitive to.
I want to say I really like this urologist. He is fairly new to us but he is so much more caring than the last two that she has had since birth. I understand his thinking and now I must deal with me. My last question to him was that I thought that we may not have to cath her any longer if this surgery worked. He said No, that the surgery was to hopefully just slow the progression of this disease, meaning the damage to her kidneys. Maybe I was just too hopeful and heard what I wanted to hear. These are the days I don't like this Trisomy 18 thing!


Laurie in Ca. said...

I love you and Annabel and am praying you through Cathy. I am so sorry for the disappointment once again. I don't like the Trisomy thing either. I love the little girl who has it though and she is what counts to me. Love you my friend.

Love and Hugs, Laurie

The VW's said...

I understand the feeling of knowing that you are very blessed, but still having something to whine about! It's important to always look for the positives in our life, but there is a lot that goes on that makes us sad, stressed or just plain grumpy! Don't feel bad for unloading! I believe that letting it all out is a way of getting to the blessed feelings!

I'm so sorry that you received this news! I would be very sad about this too! Of course you don't want to do cathing and put Annabel through this! Hang in there Momma! You are doing a wonderful job!

Sorry that you have to say goodbye to your son again soon! This must be so difficult! Those pictures of him and Annabel are priceless! Tell him thanks for what he is doing for our country!

Love, Hugs and Prayers!!!

Mrs Redboots (Annabel Smyth) said...

Hugs and prayers, as always!

ANewKindOfPerfect said...

Can you get a second opinion on this issue? I wonder how much residual "typical" people have.

And then like you said, it's not the end of the world. It does suck, but it's not the worst thing. We cath six times a day - every 4 hours. Luckily we have the Mitrofanoff which makes life SO much easier. I would definately recommend it if he thinks you will have to continue cath'ing forever?

I'm sorry you are so disappointed. Sometimes I hate doctors, even as much as I love them!

connie said...

I can understand that one of the hardest parts is not being 100% convinced that this is what is best for her, so I sure don't have anything to add here. You know already that I walk the line between total compliance and shaking things up a bit when my own instincts make it hard to just comply. And you know that sometimes I've learned the hard way that Dr. B or another doctor was right and I was wrong. I am always grateful for Dr. B's ability to speak her mind AND allow us to speak ours. I know Dr. J and also think he is wonderful, and so it's so hard. You're lucky to have him for Annabel, but you need a little more convincing to be fully on board with the cath-ing. I know what you mean about worrying about introducing bacteria and the other things you mention. I hope you find some peace about this.

Penny said...

Well, piping up and stepping way out of any experience here but I would have to agree with the thought that each time you cath you also can introduce bacteria.

Finding a second opinion a thought? It seems like Annabel is doing so much better but like in many things in life I guess 2 steps forward can mean 1 step back.

Hugs, love that sweet smile!

Alyssa's Mom said...


This is a general post regarding all that you have been managing with over the last few months...I know you are not looking for an "atta girl" from anyone. You do what you do with love and devotion and with God given strength/determination. Yet I feel compelled to say it "atta girl!" I've been a voyer of late, checking in but not commenting (although wanting to)this roller coaster of T18 can sure through you for a loop (repeatedly!!). This will all be worth it when you get your diploma from the School of Affliction. I hear the after party is pretty righteous :-)

Truly you are gem and the bits of "whinning" are neccessary to avoid a melt down. You always use your unloading as a way to reflect and gain perspective~ to Annabel's benefit! So the long and short of it Cathy your doing an awesome job. In the midst of all of your concerns you always make time to be a consistent encourager to the rest of us T18 families. For that I truly thank you. So glad that Tyler arrived home safely for a visit. He, you, Annabel and the rest of your crew remain in my prayers!!

hugs to you~


Holli Davis said...

I am praying for you.... its so hard... I know... I hope Annabel stays well, and you are enjoying her.... even if you have to cath her....

Annie said...

Oh Cathy, I'm so sorry. Just when you thought you were home free. I can certainly understand your logic though.

Is there anything else that can be, can you test urine frequently to see if bacteria begins to grow and then cath to "nip the infection in the bud" if it does?

Is it a compromise to cath only once a day for her to be totally empty?

You are the greatest mom every and you can whine any time you want to. Only you aren't whining because your concerns are legitimate and we all understand your exasperation.


TheRextras said...

I feel bad for you and Annabel, Cathy - go ahead and feel the whine. Your misgivings are justified.

Others have already left useful suggestions and questions.

The urologist's requirement for continued cath'ing - due to the urine backing up into her kidneys? Will her developing standing help reverse that?

4x/day is better than 8x/day.

Hugs, Barbara

Cathy said...

Thank you to everyone for your comments. Everyone is so right, it can be so much worse. I had to deep suction tonight and let me tell you I will take cathing anyday! As Barbara pointed out 4 times is better than 8. I will talk with Dr. B because I feel like she knows her day to day care so much better. Dr. J is just learning Annabel and I haven't given him enough information to really know her. I am still so thankful for him and to be in his care.