Saturday, April 11, 2009

Jessica's GI appointment: caution... poop mentioned

Jessica had an appointment with the peds GI doctor this last week. Jessica's retired Peds Cardiologist, Dr. D., (who diagnosed her at the age of 2 weeks and has been her PC for 20 years!) came to the appointment with us! He had told me before he retired to keep in touch and let him know of any appointments and that he would see if he could meet us there. We had heard that he still goes to the clinic where we see both the GI doc and the PC (peds cardiology) and helps them out. I emailed Dr. D and he met us there. He knows the GI doctor and has worked with him for years.

I had noticed the week before that she has gained a few pounds and thought it could be congestive heart failure and retaining fluid. The Peds Cardiologist (PC) checked her for edema and it wasn't too terribly bad - so no increase on the meds for it. Well, I think we figured out where she's retaining it... in her belly. Even though she is on Miralax (1 1/2 - 2 doses per day), she is still not emptying her bowels completely. The GI doctor wants us to flush her out. He originally said that with children he has them take a dose of miralax every 20 minutes for 8 doses!!! I just sat there dumbfounded. That's a heckuvalot of Miralax! The GI doc told us that it's the safest way for kids and that it works. He uses this method all the time with children.

Jessica's main problems at this time are twofold: one) she doesn't have the energy to push out the poop (see, I told you it was mentioned!) and b) her bowels are sluggish due to the Ischemia. Even though I make sure that she isn't constipated, it's still really hard for her to "go". Several times a day I rub her tummy to help her pass the stools a little easier.

After all was said and done, it was decided that since Jess has fluid issues and can become dehydrated easily, that we will do 4 doses one day and 4 doses the next. Only clear fluids during that time and a soft dinner the night in between the 2 days. It's going to be a really hard thing for Jess to go through... and me too. I'll have to be with her the whole time. She always needs my help with potty stuff and won't let anyone else in there with her... not even her favorite nurses. I'm also going to have to keep an eye on her and make sure she doesn't get too dehydrated. Jess has been eating more lately - which is good - only it's going to make it harder for her to go through this cleansing process. The GI doc said that we didn't need to do it right away but soon - probably when my hubby would be here to help me out. I am NOT looking forward to this but the GI doc and the PC both said that Jess will feel MUCH better once it's done.

I've read online that ischemia of the bowels can greatly increase the chances of developing an obstruction. The GI doctor said that the cleansing will really help to prevent that. He also told me what the symptoms are of an obstruction. I am just praying she doesn't have to go through that!

I'm not sure why she has to go through all this bowel stuff on top of her heart problems. It just doesn't seem fair. It's becoming more and more of a chore for her to just go poop. I've been committed to helping her the last 20 years, I'm sure not going to stop now! I'm just concerned that I'm soon going to have to BE committed! haha!

The visit went pretty well though and Jess seemed cheerful. She was so excited to see Dr. D again and she loves the GI doc. I like his compliments... he said I don't look old enough to have a 20 yr old daughter so I think we'll keep him. While we were at the clinic Jess wanted to go over to the cardiology side of the building so we did. We saw the PC nurse whom we've known since Jess was a baby.... she had been at the out-reach clinics the last two times we had come into the office so it had been awhile since we had seen her. Dr. K (who did Jessica's last cardiac cath 5 yrs ago) was there and chatted with us and then some of our friends came around the corner! I knew they had an upcoming appointment but didn't know what day it was for. (OK, I had the email but had only had time to skim it and didn't pay attention to the day nor time). So we got to see them too!

After the appointment we went to IHOP for lunch with our dear friend, Susan from Tu Nidito. Susan and her husband, Randy, are volunteers at Tu Nidito and we've known them for about 9 years! They are so sweet! Anyway, we like to go to lunch with Susan every couple of months or so but with Jessica's health declining and the germs out there during the winter, it's been quite some time since we've gone out. Susan has brought us lunch from McDonald's but it's just not the same. We had a nice lunch, came back home and had naps. We are still trying to recover from our outing! Jess gets over-tired and then the pain sets in. She got me up early this morning and I'm still trying to get back to bed. I keep getting phone calls which is delaying my going back to bed.

Our computer had a virus (OK... 200+ viruses!) and was in the shop for almost 3 weeks! After I got it back, I couldn't find any of my old emails. We took it back to the shop this morning and they can't find them either. The main reason I need the emails is because I have saved some CM orders on them and didn't print them up and I need them for taxes! I should have printed them all up and put them in a safe place... I know. I'm also frustrated that I accidentally washed my cell phone so it died, and I lost all my saved phone numbers on there. I think I'm getting my butt kicked here. Here's the score:

concentration: 0
sleep: 0
pain: 100
confusion: 75 (I'm being easy on myself here. lol)
feeling like a dufus: 50

haha... ok, I'm just being silly. I'm not really as "down" as I seem, I just feel overwhelmed a bit.

My in-laws are bringing dinner to us this evening. We usually like to go to their house the day before Easter and have a little Easter egg hunt (plastic eggs filled with candy that grandma puts together and grandpa hides)... but since it is stormy and Jess just doesn't have the stamina to walk around much trying to find the eggs, they are going to bring dinner to us and spend some time here. Jessica LOVES looking for and finding the eggs but has felt bad because she gets so short of breath and feels horrible when trying to do so. We have even brought the egg hunt into the house and hid the eggs in just one room and it's too much for her. Grandma is putting a little basket together for her and will tell her that the Easter Bunny knows how hard it is for her to find the eggs so he left the basket at her house. I'm sure she'll have plenty of candy for the boys too. They don't care about finding the eggs anymore - just the candy. LOL My MIL realizes how tired I am and doesn't want me to have to cook. I'm so glad they are bringing dinner and are going to spend time here. They live about 20 - 25 minutes from us and I hope they drive safely in this rain.

Hope everyone has a great weekend and a Happy Easter. Thanks for stopping by!


Rene said...

I hope you have a very happy Easter and with so much family around, maybe you can sneak in a much needed nap! Love you bunches!

Tommy's mom

Awesome Mom said...

I hope you have a happy Easter. I hope that the poop issues resolve. I never realized how obsessed I could come with poop before becoming a mother. Right now I really wish that Harry would just poop on the potty already.