Wednesday, October 17, 2007

Update on Miss Jess

It seems that the Procainamide is helping! wOOt! Jessica still has periods of time where she says her heart is beating fast or hard but they don't last long - and they don't seem to be happening as often. We saw the Peds Cardiologist last Thursday and he said that she looked good! We did an EKG and it is the same as prior to the meds (they did an EKG several times while she was in the hospital). So everything looks pretty good! The doctor asked me if I wanted him to order a holter monitor and I said yes. He asked me why since Jess seems to be feeling better and do I REALLY want to know he was going to order a holter monitor. Yes, I REALLY want to know exactly how many PVCs Jess is actually having. I'm still waiting for the hospital to call me to set it up. I haven't called them since it's been a hugely hectic week and I'm not extremely worried about it. Jessica told me last night that her heart was beating "crazy" so I put the pulse ox on her. She was having some PVCs but they weren't in a pattern - just random. After a few minutes she went into a pretty steady rhythm and she was able to settle down and go to sleep. She doesn't have nearly as many PVCs when she is sleeping so I told her that what she needs to do is to go to sleep and then they will stop. I'm not sure if that will work but maybe it will give her some motivation to relax and that it's OK to go to sleep. She has been afraid to go to sleep for fear that she won't wake up.

This last Monday we had our first Tu Nidito group meeting of the year (they go by school year). It was so nice to be back. Jessica LOVES going to Tu Nidito and even though it's quite a drive for us and Jess gets tired easily, she did really well! She just about knocked me over when at the beginning of the group they had us all join together and asked if there were any announcements - Jess raised her hand and said, "I am out of the hospital because they found a medicine to CURE my heart!" Several people started clapping and many parents who know us were looking at me with very puzzled looks on their faces. I stepped in and said, "I need to qualify that - they found a medicine to help get rid of most of the extra heart-beats". Jessica knows that. In fact, on the way there she asked me if she could announce that she was home and has a medicine to get rid of the PVCs. It was just a slip of the tongue since she was nervous. After everyone separated to their classrooms and us adults were alone, I broke down and cried, telling the other parents that Jessica's heart disease is progressing and even though we have a medication to help with the PVCs, she is dying. The medication won't prevent tachycardia or a sudden heart attack. I told them that we found all this out right before my birthday. Three years ago right before my birthday Jess was admitted into a home hospice program because she was having lung bleeds practically daily. Now she is having 10,000 PVCs daily. I wonder what she is going to do in 3 years from now for my birthday? I started laughing through my tears. Knowing her, she will still be here trying to find new ways to scare me. LOL! Later, one of the other moms said that I was her hero and that she didn't know how I do it... that I've been caring for a child with a lot of health problems for 19 years. She's only been doing it for 4. I told her that in 19 years from now she will still be doing it for her daughter because she is her daughter. That's how I do it. She's my daughter - so I do whatever I have to do. Another mom chimed in that we (meaning me and Karl) have a great sense of humor and that helps. I laughed and said that we have a SICK sense of humor. Jessica has been using her hand to show me how her heart feels. She will make a fist and then open it wide and close it, open wide and close it. I tease her and say, Jessica, it's when your heart does this (I hold my closed fist up) that we need to worry. She says, "Oh MOoooooom!" and laughs.

Today is a very special day for Miss Jess. The Disney Princess on Ice is in town and our local support group, Tu Nidito, has arranged for the girls to have dinner at a Mansion downtown and then have a limo ride to the show! They are providing 4 tickets to each girl. Jessica is sooooo excited to go! Austin wants to go to spend time with Jessica and of course Karl and I want to go too! Brandon and Justen don't really mind missing it so they will stay at home and hang out together... hopefully not harming each other or the house. LOL!

Last week Austin took a spill off his scooter and broke his fall with his face and knee! He broke a tooth and was pretty banged up. That was on Monday. Tuesday I took him to the dentist and they did an x-ray, etc. The dentist showed me where the nerve was exposed. Anyway, he needed a root canal. :*( The dentist was able to do about 80% of the root canal but had to stop because there was too much bleeding in the area. So we went back on Thursday to finish it up.... the girls at the office had forgotten to call me and reschedule so we made the trip for nothing! At least they are only a few miles away. We went back on Monday and they were able to finish the root canal and reconstruct the tooth BUT... of course there's always a BUT... the tooth is loose and he may lose it. He is instructed to not bite with that tooth and to just leave it alone. We are to see him in 2 weeks and see how the tooth is doing at that time. Of course we had to pay for the root canal and tooth reconstruction at the time of service. I told the dentist that I had a dream that we paid him $800 for him to fix the tooth and then he ended up pulling it just 2 days later! He said, "that's not a dream... that's a nightmare!" Fortunately we have good insurance and out of $1,000+ we only had to pay $250. Of course that's not pocket change for us but we were able to do it. Austin has been such a trooper through this whole ordeal. He was quite traumatised at first but was able to settle down. The first visit to the dentist he asked for the "gas" and he was quite comfortable with it. The second visit was supposed to be very easy and since the nerve was already dead, they didn't give him anything. The dentist told him that if he felt any pain to stop him and he would give him something. Well, apparently Austin didn't understand the last part and when they were done he came out pretty shaken up. It broke my heart! But like a real trooper he got over it pretty quickly and was able to go home and enjoy the rest of the evening. Austin has healed up quite well but here's a couple of pictures the day of his accident... in fact, his knee and face looked worse the day after!

It's amazing how God works... He watches over us and blesses us in ways we don't even realize. Karl and I have been faithfully paying our tithing, having faith that we will be blessed. Last Friday I had a Creative Memories event and had quite a few ladies come. It was pretty hectic to start with - we were short quite a few tables but with Karl's and Justen's help we were able to locate and set up enough tables. My customers had a great time and kept me busy the whole night. I had a couple of new customers who really enjoyed themselves and want to come to more events. After all was said and done, I had a lot of sales... all of which was product that I had in stock! I earned enough to be able to pay for the work done on Austin's tooth and still have enough to place an order to replace some of the product that I like to keep in stock. Of course I'll be paying tithing on the profits. (For those who would like to know, I earn 30% on the product I sell.... and of course that's 30% discount on whatever I purchase for myself.) I have a CM home event this Saturday with a very sweet lady. SHE contacted me and asked to do one in her home. I haven't done a home show in at least a year! So I'm kind of nervous... but one of my other really great customers will be there too so I feel more at ease. I keep telling myself that I don't need to be nervous... just go and enjoy myself. I love what I do and I love the products... I do this for FUN, not for the sales so if I make some money GREAT! If not, then at least I got out of the house and had some fun with adult women! hehe!

Last night my mom called and I was telling her that my stomach hasn't been feeling very well lately and that I've been having more anxiety. Then I told her about all the appointments that I've had with Jess and Austin and how exhausted I was before even going to my CM event and that I needed all weekend to recover. All the things I've gone through with Jess and Austin are very emotionally draining and then of course all the running around is tiring. My mom said that it made her tired just hearing about all that I've been through the last couple of weeks. I realized , well, DUH....... no wonder my stomach isn't feeling well and I've had more anxiety. LOL! I need to give myself a break and pray for a boring week next week. haha!


Mama Bear June said...

Oh, dear. I'll be praying for a boring week for you, too. Always praying for sweet Jess.

And poor Austin! He really got knocked around. And the tooth story had shivers running down my spine. I have a tooth that's had a root canal and they keep telling me I shouldn't feel anything there, but that doesn't lessen the pain and sensitivity a BIT!

I'm glad you had a good CM event. Sure wish I was closer and could come. My consultants keep quitting or moving, then I meet others who are quite a ways away. Another friend from church has recently signed up and she's much closer than anyone else has been, so I'm hoping for regular crops soon.

Ruth said...

I'm so glad to hear the new meds are helping Jess. Love the pictures of her!! I'm so sorry that Austin took such a big spill...especially the face/tooth part. I hope you have a quiet weekend and catch up on some much needed rest!

Awesome Mom said...

Yikes, you sure have been busy. I too wish you lived closer. I haven't been to a crop in ages! I have so many pictures backed up and begging to be put into a book.

~Jennifer said...

I'm glad to hear Jess's new meds are giving her some relief. Now we just need to find some relief for you. It sounds like you definitely need a nice restful week. I'll be praying that's exactly what you get.

I feel for Austin too. My oldest daughter did just about the same thing to her tooth a few years ago. Not a fun thing at all, and as a mom I know that sick in the stomach feeling that you get whenever something like it happens.

chelle said...

awww I am sitting here in tears. It breaks my heart that Jess is afraid to go to sleep :( And then with your birthday and her being ill...I am so glad the medication is helping. I am also so so overjoyed that these 19 years with Jess have been hard I am sure but she is such a beautiful girl. In ho you describe her and her pictures. The world is a better place with her in it.

OUCH on the fall and the face breaking the fall!

The Special Zipper said...

For once I'm out of words Nancy.

Thoughts and prayers are with you all.