Here's a few things that we know about Miss Jessica's tummy problems (which have been going on for YEARS):
1) She has gastritis and "ulcerations everywhere"... we discovered this during an endoscopy just over a year ago (Dec of 06).
2) The causes of her gastritis is a combination of taking
3) There is no cure for her lack of oxygen (which will continue to get worse as her health deteriorates) and she needs every single medication she is on.
4) Jess takes twice the Prevacid as the usual prescribed dosage for adults. Prevacid helps keep the acid levels down in the stomach.
5) She takes Carafate 3 times a day. Carafate must be taken on an empty stomach. It rules our lives. Seriously. Jess takes one tablet (which must be swallowed quickly or it would "explode" in the mouth and make one gag and throw it up. It tastes very chalky. Trust me. We know this from experience. Too many times. Then Jess has to wait one hour before eating anything. Finally after eating a meal (or snack as her tummy hasn't ever liked to eat very much all at once) then we have to remember what time she has stopped eating and then take another Carafate 2 hours later. So two hours after stopping eating a Carafate is taken then she has to wait one more hour before she can eat again. Then stop eating. Then two hours later take a Carafate. Then wait one more hour before eating. We have to do this all day long, every single day. It's hard to make Jess eat enough when it's time to eat so that she doesn't get too hungry before being able to eat again yet her tummy can't take too much at once or she throws up. Carafate coats the stomach and helps heal the ulcers and calm the gastritis.
6) Jess has very sluggish bowels. This is also due to lack of oxygen. For many years now she has struggled with constipation and several years ago she was started on Miralax. "Miralax is a polyethylene glycol powder which dissolves in water. This material is not absorbed from the intestinal tract. It stays within the gut and acts to pull water into the intestine thereby increasing the volume and frequency of bowel movements." The site recommends to not be taken for over 2 weeks (of course unless directed so by a physician) . Due to Jessica's chronic lack of oxygen, she needs Miralax long term. In fact, she now takes up to twice the amount that is usually prescribed to most adults. I usually help Jess in the bathroom so I know whether she needs more Miralax or less on a daily basis and the GI doctor has told me that I am doing a really good job! Not the funnest job in the world but I love my daughter so I do what I need to.
7) Jessica's GI doctor decided to put her on Xifaxan within the last 6 months. Xifaxan is an antibiotic that fights bacterial infection only in the intestines. In many cases bacteria can over-grow and cause painful gas. Jessica's tummy has been somewhat distended and a sonogram was done to see if there was fluid build-up. There was no fluid so we were told that it is gas. Yes, Jess has a lot of gas so she was put on Xifaxan. It is given for a two week period and then sometimes has to be repeated in 2 or 3 months. Well, Miss Jess has to do things her own way.... and she seems to need it constantly. She has more pain within 2 or 3 days after a 2-week treatment so I usually have to refill the prescription right away. Since the medication is not absorbed into the bloodstream the GI doctor has told me that it's ok for her to take it all the time if needed.
Jessica has still been having some stomach pain but not extreme. We saw the GI doctor on March 20th. He examined her and said that her stomach was still somewhat distended and Jess told him that she still has some tummy pains. He wanted to start her on a tiny dosage of Erythromycin to help empty her bowels. I knew that Erythromycin could cause stomach pains and diarrhea so I was concerned about her taking it. I was reassured that since Jess would be taking it in such a minimal dosage - 100mg once/day vs the usual 500mg twice/day, then that should not be a problem - and if it was then I could stop the medication. The main thing the GI doctor was worried about was if it would interfere with any of the heart medications. So I was given a prescription and told to hold on to it until the GI doctor could get in contact with the Peds Cardiologist.
I took Jessica to see the pediatric cardiologist (PC) the very next week, March 27. We just happened to have an appointment for that day. Apparently Erythromycin can cause arrythmias! I had no idea that could be a side effect! Since Jess is still having around 10,000 PVCs daily we sure didn't want to increase that! The PC wanted us to do an EKG that very day before starting the Erythromycin to get a baseline of what hers looks like and then we were to go back the following Tuesday for another EKG to see if it had changed. The PC didn't think that anything would change considering the tiny amount that she would be taking.
I was still very skeptical about starting the medication but figured that Jess deals with so much pain every day she deserves to try this in hopes of diminishing her tummy pain. Jess took one dose of Erythromycin Thurday night and another one Friday night. By Saturday morning she was complaining of more tummy pains and by that evening she was practically doubled over in pain. I told her that there was no way she would take that medicine again. Of course part of me wanted to think that maybe she had caught a stomach bug but that isn't the case. As I mentioned at the beginning of the post, she was in so much pain that she hardly slept Saturday night. It's now a week later and she is still having a lot of tummy pain. I am so upset that I agreed to let her take the Erythromycin. She hasn't been in this much pain in several months. I know that there was no way to be certain whether that small dose would help or hinder but I truly had no idea it would last this long.
Today (it's still Thursday in my head since I haven't gone to bed yet)... anyway, today we were invited to go to lunch with our friend Susan from our support group, Tu Nidito. Jessica hasn't gone anywhere fun since.... well, hardly ever all winter! So we planned our little outing. Jess was so excited that she woke up at 8am. We were supposed to go to her favorite restaurant, IHOP, at noon. I told her to go back to bed and get some sleep since she didn't get to bed until after 1am. Well, she went back to bed but kept getting up.... so when I finally got up to have my shower I told her that I would be in to help her get ready to go as soon as I was done. Justen was home so I asked him if he would be willing to load the wheelchair onto the lift for me and he said yes. The silly girl was SOUND ASLEEP when I got out of my shower. I tried several times to wake her up and she was too tired! What a goof! I called Susan and she recommended that we reschedule for another day but I knew that Jess would be upset if we didn't go today so I asked Susan for a little more time to get her up and take her to lunch. I finally did get her awake and she was so glad to be able to leave the house and go somewhere fun. She wasn't able to eat much at all because of her tummy ache so we brought her food home. Later this evening she was able to eat 2 pieces of her chicken strips and a little bit of fruit. She kept saying that she was so happy that she got to go have lunch with me and Susan and she didn't even let her tummy aches get her down.
It breaks my heart to see her in so much pain. I've been doing a lot of wondering WHY. She has already been through so much, WHY does she have to go through more pain? Over the years I've had so many people (some family members included) tell me "It's in the Lord's hands so don't worry", "You know she will go to a better place", "You need to accept it and move on"... etc. I KNOW it's in God's hands but sometimes I wonder why His Hands don't comfort her and take the pain away. I KNOW that heaven is a better place but the selfish part of me wants her to experience comfort and peace HERE. I KNOW that I have accepted being a mom to a (pick your term) chronically ill, disabled, developmentally delayed, medically fragile, terminally ill child but how do I move on when her health is slipping backwards? She knows that girls her age are graduating from high school, going away to college, getting jobs, getting married.... but at the mental age of about 7 she doesn't understand that she can't just choose some guy to marry and get married. She doesn't understand the responsibilities of being an adult, living out on your own, being married and how to maintain such a relationship. Heck... my oldest son is barely learning about all that and how hard it is to be a responsible adult. (this could be a whole new post!)
I've been having a difficult time lately. Many emotions going on inside of me. Too much stress. So much worry. BUT I have made sure that I enjoy the little things. I laughed out loud at the fact that my "little girl" was so excited to go out to lunch that she couldn't sleep in but then fell asleep at the last minute and almost missed going out. I love her stories she makes up and writes down in her books. It's very interesting to try to make sense of those words and the lack of sentence structures and very little punctuation. I probably use way too many run-on sentences but this girl can go two.... maybe even three pages before inserting a period or exclamation point. LOL! I've been enjoying Brandon being the comedian that he is and Austin growing up and trying new things. Justen has been opening up to me more as he tires to prepare for his future and his wedding. Karl and I have tried to go out a few times and we are soooooo grateful for our relationship. So don't think that all is doom and gloom here... but it is so hard to watch my only daughter slowly deteriorate and know that she is dying. I look at her laying on her hospital bed sometimes and imagine what it will be like when that bed is gone. Today as I stood in her doorway and she was talking to me I looked up at her shelf which holds a ton of stuffed animals and wondered to myself if the people who gave those to her will want them back as a momento of their love for her? My nephew is battling a brain tumor and one of my nieces just found out that she has cervical cancer. Is it right for me to hope that IF either of them dies from their cancers that it happens after my daughter is gone so that I can travel to go comfort my siblings? How many people think about these things? How many people have reason to? Probably more than I know. Probably way too many people... who all feel alone in their feelings too.
Now you know why I haven't updated in awhile. There is so much going on that it takes me 1/2 the night to write it. If I try to write during the day then Miss Jess interrupts me 20495838472 times and it doesn't come together. LOL
I have some fun Easter pictures that I will try to upload soon. We went to the Jensen Grandparent's house and enjoyed our visit with them. If I don't then upload the photos and post about Easter then please remind me to! Like I said, it's not ALL sad/hard/difficult/painful. I want to post about the fun stuff too.
Thanks for reading and thanks for caring.