Wednesday, May 28, 2008

By the way, we are home

ooooooops! I sent out emails to update people but forgot that my poor blogs still thinks that we are still in the hospital. We actually got sent home the very next day! I was a little worried about going home so soon but apparently it was the right thing to do. Jessica has been coughing a little bit but then again, she always coughs a little. I'm so relieved that she didn't have a sudden asthma attack after taking the medication. There is still a possibility of her having problems with the medication but so far, so good. I just need to keep an eye on her breathing and coughing (as I always do) and alert the doctors if anything changes. We are going to have to do a holter monitor sometime in the next week or two. I need to call the PC tomorrow and see when he wants us to do it. Jess has complained of her heart beating weird once since we've been home but that's not too bad considering she used to feel it multiple times a day, every day, last summer. Hopefully this medication will help stop the PVCs too.

I was soooooo glad to come home. I swear, those chair things that pull out into beds are HORRIBLE! I've tried using a cot that Karl uses when camping, but it didn't seem to be any better than the chair. I'm just getting too old for this. I keep saying that I've been doing this for almost 20 years but the truth is, it's almost 21 years. You know, Jessica is turning 20 next week but I took care of her and practically lived at the hospital with her the whole first year of her life - you know, before she turned one year old! So it's really 21 years that I've been taking care of her 24/7, watching her breathe, taking her to doctors, sleeping in the hospital with her, walking the hospital halls with her, etc. I'm too tired to type everything I do for this child. LOL My point is that I've been doing it for a long time.

I had a little chat with Dr. Samson, one of the Pediatric Cardiologists who specialize in electrophysiology. He was actually the one who admitted Jess to the hospital and Dr. Valdez checked in on her too. They work together with the other team of PCs. I asked Dr. Samson who was going to get the "short straw" and take over Jessica's case once Dr. D retires next month? He laughed and said, "Probably me... you know, we go way back! I remember holding her on my lap as I did my reports when I was a resident." We had been talking about how he was a resident here way back when Jess was a baby and we were "frequent flyer's". He said that there was a catch to that though... he is going to New Zealand in July and won't return until December! He will be working in the cath lab and learning new techniques and bringing them back to Tucson. I told him that I am a member of the PdHeart support group and that I know there's families on there from New Zealand. I should warn anyone on that list to watch out for him! He laughed and told me to say, "Whatever you do, don't go into the cath lab with Dr. Samson!" LOL So if any of you are in New Zealand, I'd love to warn you about Dr. Samson... except that I only have good things to say about him. He is a very gentle and kind doctor and he's pretty smart, too. :)

Dr. Samson said that he and Dr. Valdez will work together with Jessica since two heads are better than one. I mentioned that Dr. Klewer did Jessica's cath a few years ago and we really like him too. Hey, the more the merrier then! I think it's great that so many pediatric cardiologists are willing to work together to help Miss Jess. Dr. Donnerstein is retiring next month and we are really going to miss him. He said that as far as he is concerned, he is not retired when it comes to Jessica.... well, I guess he had better give me his home email address then. I'll let her send him emails everyday. LOL Jessica's new thing to do is send emails to me... they are really cute. She says things like, "I love you mom signed aka mary potter malfoy and princess jessie married to legolas" Of course there's no punctuation or anything and if you don't know who her "aka"s are, she will be happy to tell you the whole story - actually two stories that she has come up with. They could be considered fan fictions. Two nights ago I caught her sending an email to my sister, her aunt Karen. It was really cute and in it she told Marcus to be sure and take his medicine so it can help him feel better. Marcus is my nephew who is battling brain cancer ... he is having some emotional effects from the damage to his brain from the tumor and he won't take his meds... which is not helping. Anyway, if any of you would like some cute emails from Jess, let me know and I'll have her email you! She loves people and loves talking to them. I wonder where she gets that from... not that I've gotten off track of what this post is to be about or anything....

I wish to ask if any of you have dealt with anorexia? There's a young lady who was Jessica's roommate who is in bad shape. When I first saw her I wondered if she was an AIDS patient since she was so frail but after a couple of hours in the same room I knew what was wrong. I felt so bad for her. I have to admit that I got tired of listening to the 10-minute long discussions on whether she could eat two of the broccoli florets instead of all 3 since it looked like more than 1/4 cup, discussions on how many times she could walk to the playroom (she used to compulsively exercise so she is limited on that) and listening to her trying to play the games of changing her mind as to what flavor of pediasure she would drink in attempts to postpone drinking it. Sometimes she would get very emotional at mealtime and it would upset Jessica. I'm so glad that we were only there two days (one night) so that we could come home and not have Jess worry about her roommate. Jessica loves everyone and worries when she sees someone else having a hard time or being sad. While we were there I overheard this girl talking on the phone to her mom and wondered why the mom wasn't there. When we were packing, getting ready to leave, I saw the mom come in. I was really weird because just catching glimpses of her, I felt like giving her a hug. I felt a connection to her and she looked a little familiar but since the roommate insisted on keeping the fabric partition closed, I couldn't see her very well. As we were leaving, the mother said to me, "you don't remember me, do you?" I said that she looked very familiar but didn't know where I knew her from. Come to find out, she was the mother of the girl who planned and executed a special prom that Jessica went to a few years ago! This lady, we'll call her Ms. M, has a daughter who, if I remember correctly, had cancer and then decided to have a prom for teenagers who are battling serious illnesses. That was Jessica's one and only date she has ever been on! I have several pictures of the prom and will have to find them, scan them and then upload them here. Ms. M was there, helping her daughter with the prom and she was very taken with Jessica. She helped Jess pick out an outfit and some jewelry and she even painted Jessica's fingernails. Ms. M and I talked and we hit it off. Anyway, the one who organized the prom was Ms. M's older daughter, who is now in college. This young lady who was Jessica's roommate is her younger daughter. If I remember correctly, Ms. M's husband died of cancer, she had a bout with cancer and I believe her older daughter had cancer. Now her younger daughter has anorexia and will most likely have to be admitted to a facility... she is almost 16 and only weighs 79 lbs. I hope I'm not violating any HIPPA laws or any confidences but it is shocking to me that this disease could get so bad? I can see how this young lady would have a lot of stress with all that her family has gone through. Ms. M told me that her daughter came in with multi-organ failure from the disease. Apparently this isn't the girl's first hospitalization. Anyway, I'm just trying to wrap my head around this disease. There has got to be more to this girl's life than trying NOT to eat and trying to exercise to lose weight. Jessica tried talking to her several times about different things (she had to go through our side of the room to use the restroom and that's when Jess would attack talk to her. She only seemed interested in getting back to her bed and NOT talking to anyone. I felt bad because Jessica kept wanting to talk to her roommate... why not talk and try to make friends when you are both in the hospital. Don't get me wrong, this young lady wasn't rude or anything, but I could tell she wasn't interested in making friends. Ms. M gave me her phone number. I've been thinking about her a lot and will try to call her sometime. I tried to invite them to Jessica's birthday party but Ms. M said they couldn't come... it would just be too dangerous for her daughter.

You know, sometimes you do go home thankful for your own problems.

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