Update on Miss Jess

Jessica has been hanging in there and dealing with both tummy pain and headaches.

First I'll tell you about our saga with the tummy pain issues. Jessica is going to have an endoscopy on Tuesday. We go to pre-op Monday afternoon to make sure that anesthesia knows what they are dealing with... I mean, WHO they are dealing with. Actually, the peds cardiologist suggested that they look at her chart to see what exactly they used two years ago when she had her cath and bronchoscope since she did very well with the anesthesia back then. Jess has been quite worried about being intubated so talking to anesthesia on Monday will probably help. Fortunately the new movie, "Pirates of the Caribbean ~ Dead Man's Chest" comes out on DVD that day and I told her that if she does a good job for the endoscopy, we'll buy the movie and watch it together that night. (We saw the movie in the theater last summer while Karl and the boys were in WA and we loved it!) We expect to be home Tuesday evening - save nothing goes wrong. So what does the GI doctor expect to find? Possibly nothing. All these issues may be due to lack of oxygen to her GI tract. We are already doing everything we can for that. If they find something then we will deal with it and hopefully it will be something that we can treat. Tummy pains aren't fun.

We finally got in to see the neurologist this last week and he pretty much said what I expected. After all the questions and the exam he thinks that Jessica's headaches are mostly due to chronic hypoxia (lack of oxygen). He also said that sometimes Jessica's heart may not be able to pump the blood against gravity and up to her brain so that may be why she is having sudden dizzy and weakness spells. There is a possibility that she could be having Transient Ischemic Attacks (TIA) or tiny bloodclots going to the brain. Jessica's blood is thicker than normal due to lack of oxygen so blood clots could be forming. She used to take aspirin therapy to help prevent bloodclots but since she started having the lung bleeds, we've had to stop the aspirin and any other blood thinner. Unfortunately, the way to treat TIAs are to give blood thinners. Another possibility for her headaches are migraines. I personally feel she has had 3 migraines. I've had to give her Tylenol and morphine and convince her to sleep it off. That has helped. We aren't able to give her any of the traditional anti-migraine medications because these can cause the blood vessels to contract and we do not need to be messing around with her already unstable cardiovascular system. So... even if she is having TIAs or migraines there's nothing that can safely be done to relieve these issues. Frankly, I'm getting quite tired of hearing "there's nothing we can do". But I digress. The peds neurologist was very cute with Jess. He listened to her as she showed him her book she's writing about her character, Mary Potter (Harry's long-lost twin sister). When he found out "Mary" is in slytherin he said, "you are pure evil" and continued to tease her about her being in slytherin. She loved the attention. After awhile I mentioned to the doctor, "I think you now know why the peds cardiologist wanted her to be seen by a PEDIATRIC neurologist" and he nodded and smiled. It was quite interesting when we first got there and the nurse came in to take the medication list... Jessica jumped in and said that she could remember the names of some of the meds. So she started to list the names and I would give the doses. After about 5 she said, "WE don't remember the other ones." The nurse stood up and then said to me, "when you get the list, just call me and let me know." I had to tell her that I DO remember the other meds and that I can tell them to her now. LOL! Jess kind of got upset and said that she did her best to remember so I told her that she did a really good job. She kept interrupting me as I was trying to give the rest of the meds list to the nurse and I had to tell her that it's mommy's turn to talk. A couple of times when the doctor was talking to us and was suggesting things that she should do when she has a headache, I had to ask Jess if she was listening and no, she had no idea what the doctor was talking about. lol! She really is still a little girl. One of the suggestions was for her to lay flat so that her heart can pump the blood to her brain more easily. The problem is that she isn't able to breathe well laying flat - hence the hospital bed in her room. *sigh* The doctor also mentioned that we could do an MRI to see if she is having TIAs but didn't know if we really wanted to do it since we couldn't do anything for her if she was having them. He asked me what we would do with that information and I said, "worry more." He nodded and agreed. Well, when Jess heard MRI, she jumped in and started saying how she can do it and she wants to do it... she can listen to music and she really wants to do it. Finally I figured out what she was thinking so I asked her if she was worried that she might have what Marcus has. She got quiet and choked back some tears as she said "yes". I told the doctor about Jessica's cousin's brain tumor and her concerns. He tried to tell her that by the exam he just did he is able to recognize a brain tumor and she doesn't have one. She sighed very loudly but still insisted on doing an MRI. So... I guess we will be doing an MRI sometime soon. The doctor said that if it helps her not to worry then it is worth it. I agree - I just hope that the information doesn't make me worry more.