Re: Jodi and Alyssa granulation tissue

[Guest guest]

Hi Dayna;-)

I had used the silver nitrate at one time and yes it worked but you had to

be very careful not to touch the healthy good skin.

Another product was given to us to use on granulation tissue before it got

real big and this product was called xeroform. It is a petrolatum dressing.

It seemed to help but Janelle was not with us long enough to know if it

would have cleared the problem up completely. I thought it was worth

mentioning though.

Hope this helps.

J

>

> Reply-To: RSS-Support

> Date: Wed, 26 Nov 2003 22:39:04 -0600

> To: RSS-Support

> Subject: Re: Jodi and Alyssa Update LONG

>

> Jodi and all,

>

> Well now that things have slowed down a bit I thought I would tell you about

> our visit to NY and subsequent G-tube placement. FYI I am soooo wordy!!!

>

> We had our first visit with Dr. H in mid October. Our appt was for 9am and we

> were with someone by 9:30am. This was a pleasant surprise!! After taking

> Alyssa's history we saw Dr. H a short time after. She spoke with us about 10

> minutes. She mostly asked about Alyssa's food intake, (of course). She said

> if Alyssa were a NY patient she might work more with Periactin and trying to

> increase her calories. She asked how we (my mom was with me) felt about it

> and before I could answer, she asked my mother not me! Apparently, I am

> biased!! My mom mentioned Alyssa's waist size is going down not up (mom

> makes her pants) and that was the last word we had. She said okay lets do a

> g-tube, (which we expected and were prepared for). The next 30 minutes were

> spent getting authorization from our insurance company and that was it. Our

> appt was over. She set up surgery for exactly 1 week later she was admitted 3

> days later for all the tests to see if she needed the triple procedure.

>

> We were admitted the following Sunday eve for a Delayed Gastric Emptying

> Monday morning. The results. . . . 2290 minutes!!! The strange thing is the

> same test was run here and came up with 80 minutes. Luckily (or unluckily) no

> signs of reflux so an Upper GI was done later that day. Again, no reflux so a

> PH probe was set up for Tuesday-Wednesday (it's a 24 hour test). So, we were

> just scheduled for the tube placement.

>

> The surgery went very well, but the worst part was the itching from the

> morphine they gave her. At first the nurses thought she was freaking out

> from the pain, so they kept giving her more and more often. I thought she was

> so upset from the large amount of wires and monitors and the 4th tube up her

> nose in 5 days! Finally, I mentioned her nose seemed to itch (they had just

> removed the NG tube) and the nurse went " oh " and got some benedryl. It

> finally kicked in about 3 hrs later and she slept. That was the worst and we

> were discharged6 days later. We finally saw other families (Jodi Rollison and

> Amy ) about 2 days before we left. I also met Bobbi McGrath in the

> office our first day and Pattie Warren our last day. They were all soooo

> helpful!!

>

> Now that we are home, everything has gone pretty well. We are currently

> having a minor leaking problem as well as some granulation tissue.

>

> If you made it this far and have any advice I AM ALL EARS!! They gave us some

> TAC cream for the granulation tissue and I'm hoping the silver nitrate won't

> be necessary. Any alternatives would be greatly appreciated. Also, because

> of the tissue her disc is not flush with her skin and it is not terrible

> stable.

>

> We go back for a Mic-key button placement on January 13, 2004.

>

> Now, I had heard about the 3 hour appts. 1st time patients usually have with

> Dr. H. Our time with her was under an hour and most of that was spent getting

> authorizations for the surgery (which was great of her to do personally). She

> only checked on us one time about 4 days before we went home and then I had to

> track her down for discharge instructions the day we left which is also the

> day she asked us to participate in research. Is this unusual?? I have left

> NY with a much healthier child (she has gained 3lbs in 5 weeks!!!!) and am so

> grateful. But I didn't get any of my questions answered. It was just a little

> frustrating.

>

> Anyway, I have rambled wayyyyy tooo long. Thanks for reading!!!!

>

> Dayna, Mom to Alyssa, 2, 18lbs 10oz and 31.5inches!! not any taller but 3lbs

> heavier!!

>

>

>