Wednesday, August 18, 2010

Long awaited appointment...

Yesterday was the day for our long awaited GI appointment. The doctor we saw yesterday had accepted us as his patient (we are so thankful). He is the one who actually did her motility studies in the hospital in May/June.

I will attempt to explain in layman's terms as was explain to us. What normally takes place on a person when there isn't a motililty issue is that the body does a chomping motion that chomps the food and moves it through your system. In Annabel's case this doesn't happen. It is due to a few things, not all totally clear yet. Her biggest issue is that in her system she has such poor muscle tone. In many of her areas she has retrograde activity when things move backwards and not forward. With the combination of the poor muscle tone not moving things much at all and the fact that they want to go backwards seems to be causing so much of the problem.

As of next week we will remove her G-button and replace with a GJ button and she will again be fed through her J port and then she will be vented through her G button. She will not come off the TPN as I had hoped and he cannot say at this time if she will become TPN dependant. We are looking at a couple things as far as more testing. They will be doing more enzyme testing, also another endoscope for more biopsies. We are also considering a port being placed at this time to allow us more freedom for Annabel to get into the pool for her therapy. Dr. C was very open to the possiblilty of upping her dose of TPN and just giving it 12 hrs. nightly. Overall, they aren't upping her dose but they would recalculate what she was getting in the 24/hr or 18 hrs/ infusions and give it during 12 hrs. while sleeping. He listened/explained so intently which we haven't always had concerning her GI. He also wants to see her back in a month so he can get to know Annabel and how she works better. Boy, how we don't hear that very often. There are some medication changes that we are going to begin. Everything right now will be trial and error trying to see if we can induce motility on our own. Her intake into her belly is only 20mls/hr. We are trying to keep something going into her stomach as we know that is what is best if possible. Due to much of this she is still said to have psuedo-obstruction. It is just what takes place when there is no/very little motility.

This probably sounds like not much to have waited for, but there is more to it (just can't explain). Also, we do have a plan of care and that is really all we need to know that someone is caring for her and trying to help us understand what is taking place in her little sweet body!

I have added a couple more pictures. One is with Annabel and her brother Derek when he came to visit. She loves when her brothers and sisters surprise her in the evening with visits. Also the next one is of Derek and Linzy after going out to eat with their moms. Cindy (Linzy's mom is so fun to hang out with!) We had been to their church with Derek and Linzy and heard a very dynamic speaker.

7 comments:

The VW's said...

Glad to hear you finally have a GI doctor who is willing to help! This must be a relief to you!

Adorable pictures of sweet Annabel! Hugs!!!

ANewKindOfPerfect said...

Cathy, how incredible that you finally found a GI who listened and cared! That is awesome. I hope that you can get the TPN concentrated more so she's only on it at night. We did that when Emily was on it too, it ran for 12 hours a night instead of 16 or 18. That's just too much time for a princess to be hooked up! And I agree with the port idea - if her TPN dependancy is going to be longer lasting, then the PICC line is not best.

I am thrilled that he wants to see you back again soon and get to learn Annabel and her ways. :)

Stacy said...

Love that the GI doc wants to see her again in a month to get to know her and how her body works. What a blessing and I'm sure a breath of fresh air for you.

Thanks for sharing the details of your visit. Will be praying that God continues to direct you steps and renew your strength.

May said...

She is just so lovely...always love seeing her being carried by someone who loves her.

Annie said...

Anabel is looking as sweet and beautiful as ever. So glad you found a great doctor Cathy.

Is there a wedding date set yet?

Annie said...

Anabel is looking as sweet and beautiful as ever. So glad you found a great doctor Cathy.

Is there a wedding date set yet?

The VW's said...

Cathy,

If you go back to my blog and go to a post that I did on Friday, June 25 of this year, you will find info on the product that I used in Gavin's Johnny Jump Up. I put a link there to go to the company where I bought the product.

It's actually not the Jonny Jump Up that is padded and supportive, it's a product that I put into it that I bought from this company. The company is called One Step Ahead. I use this product for other things, not just the Johnny Jump Up and it is very helpful to Gavin and I.

Anyway, go to that post that I mentioned and click on the green highlighted word "here" in that post and it will take you right to the product. If you have any other questions, let me know. HUGS!!!