Friday, May 30, 2008

Life is Busy, as usual... update on our family

We have been pretty busy since we got home from the hospital. Not only am I starting to panic that we have just over 2 months until Justen and Ravyn's wedding, but I've been working on planning Jessica's birthday party which is this Saturday, May 31, I had to take all other 3 kids to other doctors appointments several times this week, we're preparing for my dh to leave town on Sunday (for work), preparing for him and both younger boys to leave for scout camp right after dh gets back (hence some of the doctors appointments) and we just found out today that Austin needs glasses. *sigh* I was really hoping he would be able to avoid them but apparently the Jensen gene skipped a generation and hit all 4 of my kids. I believe that all 3 of my hubby's siblings wear glasses but he hasn't needed them until he's gotten older and then only to drive at night. I know that needing glasses isn't the end of the world but it's one more expense that our family has to deal with right now and of course it will take Austin awhile to get used to them. Justen's car came back from the shop at a whopping $1500+! Karl and I decided that paying for those expenses is far more important than trying to provide them with a little honeymoon so we took care of it today. The kids need a reliable car to help them get started out in married life. Justen has a job and they are looking at apartments near his work. Ravyn is looking for a job but it's hard since she lives quite far from town and has no transportation(for right now). Buses don't go out that far so hopefully she will find something close to her new home once she and Justen are married and live in town.
Life is dealing us a lot of changes this summer. Austin will be going to middle school for the first time (in August), Justen is not only getting married but it moving out of the house for the first time, Brandon will move into Justen's old room so he and Austin will have their own rooms for the first time too. One more scary thing added to the table... Brandon told me that he will be eligible for his driver's permit in 8 months!!! Thank goodness it's not this summer because I just can't deal with that change yet. LOL! And lo and behold... Jessica is going to be out of her TEENS! She told me today that this is her last week as being a teenager. WOW! I don't know what else to say but WOW! Who would have ever thought?

So here we are... thumbing our noses at the CHD defects that Jess was born with. It tried to take her many times during her infancy, her childhood and teenage years. Well too bad Mr. CHD, Miss Jess is making it into adulthood! (and yet she is still my little girl who still loves Barbies, coloring books and tracing) I love it!

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.

Friday, May 23, 2008

Blogging from the hospital

Here we are, hanging out at the hospital at almost 1:00am. Jess doesn't go to sleep until this time at home, why should things change for the better at the hospital?

Jess has been started on the Metaprolol today at about 2:00pm. The peds cardiologist said that if she gets two doses and does well then we could be on our way home tomorrow this afternoon by 5:00pm, just in time for rush hour. I had no idea that we could be going home this fast! I was preparing for at least 2 nights. Of course the PC qualified that statement with "IF she isn't wheezing at all by then."

Well, Jess normally has a breathing treatment at 9:30pm and the respiratory therapist said that she sounded fine when she came in to give it to her. At about 10:45pm Jess coughed kinda hard and said she needed another breathing treatment. I wondered if it were a ploy to stay up later since she asked for her gameboy right after asking for a breathing treatment. So while they called for the nurse to come listen to Jessica's lungs, I told Jess that she was NOT turning her gameboy back on since she doesn't want to turn it off once it's on at night. The nurse said she seemed to be ok but called the RT (respiratory therapist) to come and give a breathing treatment. Oh yeah, the doctor had to write for one more treatment since it wasn't written as PRN in the orders. So after the 2nd breathing treatment which took place around 11:45, the RT listened to her and said that she could hear a slight wheeze. I hope that was just a fluke or the RT didn't know what she was talking about.... except that Jess seemed to acknowledge her and not only know what she was talking about but said she could feel it a little. *sigh*

So just keep us in your thoughts and prayers. Pray for GOOD breathing and NO wheezing!

Sunday, May 11, 2008

Jessica Graduates from High School!

Jessica graduated from High School! This was quite an emotional event for us. Our "Little Girl" graduated from High School! Jessica has been going to school in TUSD since she was 3 yrs old... almost 17 years! She has had her ups and downs medically over the years and has been in Special Ed this whole time. I thank the Special Ed teachers and aids SO MUCH! They have really contributed to how well Jessica has done academically and socially. She loves school, she loves to learn and she especially loves to socialize. Unfortunately the time has come where she is just not able to make it to school due to her medical problems. Her wonderful teachers offered to have a special graduation just for her so she could have that experience. (She is still welcome to come back to the class and visit any time she likes so it's not as if she won't be able to have that contact anymore.)

Jessica was so excited to be able to wear the cap and gown (she borrowed Justen's)! One of the teachers ordered a cake especially for her. The principle presented her with her diploma but he had to leave and it all happened while Karl went out to his vehicle to get his camera! So when Karl got back to the classroom, the teachers helped us do a much better presentation of her diploma and we got an excellent photo of her receiving it. She was also able to walk a few steps to receive it in front of the classroom whereas when the principle did it she was sitting in her wheelchair at the side of the room. The 2nd time was much better!

If you think about it, not many people would have believed that Jess would make it this far. She is amazing. God is amazing. We are truly thankful to have her in our lives still. And we are thankful to have friends and family like you in our lives as well.

Jessica receiving her diploma

Jessica said a few words... she said "I love you all".

Jess with Dad and Mom. Dad had to come while on duty, that's why he is in his uniform.

Barb, one of the teachers, got this cake made for Jess.

Jessica and Barb - we've known Barb since Jess was in kindergarten. Barb was a Teacher's Aid in Special Ed while Jess was in Elementary school for a few years. Later, when Jess started High School, we found that Barb had transfered to that Special Ed program and she has been with Jess for the last 5 years too! We just LOVE Barb!

Jessica received flowers from her former teachers Mrs. Bentley and Mrs. Palmer. (we didn't get a chance to get a picture of Mrs. Bentley with Jess but she was at the graduation)

Jessica with Mrs. Palmer - who was Jessica's teacher in kindergarten too. She transfered along with Barb to High School and was Jessica's teacher again for 4 years until she took a different job. She is also a very wonderful teacher and friend!

Justen and Ravyn came to the graduation

Jess and all her siblings... even her future sis-in-law!

Austin drew Jess a great dragon picture while at the party.

Jess with some of her classmates and Elaine, the health clerk.

Elaine, Grandma Jensen and Brandon hanging out at the graduation party.

Linda and Donna came to see Jess graduate. They were Jessica's hospice team when Jess was having lung bleeds and needed them. Now they come for social visits. They are great friends!

Jess and Amanda - our social worker and friend from " Tu Nidito".

Jess and Mrs Pankratz - Jessica's teacher from middle school. We still keep in touch with her. She was such a great help to Jess through the middle school years.

Scott, one of the Teacher's Aids, with Jess.

Jessica's whole class! Aren't they great?!

Thank you for stopping by. Leave your congrats messages please! It will really make Miss Jessica's day!

Saturday, May 03, 2008

Digitek Recall

Digitek, a generic form of Digoxin (a very common heart medication) was recalled on April 25th, 2008. Here is the link to the recall:

I got an email on Monday, April 28th, about the recall from a member of an online support group for families and patients with CHD (congenital heart defects). This email group is called PDHeart and is a member of TCHIN (Congenital Heart Information Network). I checked and sure enough, the medication that was recalled was Jessica's medication. I called the pharmacy and they knew about the recall (apparently they had just heard about it). They said they would replace the Digitek with the brand name Digoxin. I called the PC (pediatric cardiologist) and told him that Jess had been feeling nauseated over the weekend. The PC had not heard of the recall but wanted Jess to have lab work done to see if her levels were high. He wanted me to hold her dig for the day just to make sure.

So I took Jess out Monday afternoon. She didn't want to go since she was feeling so tired but I dragged her out anyway. Don't forget that I have to load the wheelchair on the lift, take the oxygen tanks out, et. It's always a lot of work to take her out and I was tired from caring for her. So... there is a long wait, there are quite a few people there and Jess is miserable and wants to go home. Then Jess tells me that she needs to use the bathroom. Ok, where's the bathroom? The lab had just moved into a new location and I start looking around. I could see through the window that goes into the reception office and behind there was a wheelchair bathroom. Nobody was in the reception area so I figured I would just open the door that leads back there and take Jess to the bathroom. Well... the door is locked! I could hear a baby crying and knew that the bloodsucker phlebotomist probably needed help from the other person who was working there. I was having flashbacks of all the blood draws Jess had as an infant through childhood and having to hold her down while she screamed and kicked, scratched and bit squirmed. Sometimes we needed multiple people to hold her down. Sometimes the veins wouldn't cooperate so it took multiple sticks and fishing around. :( I'm soooooooo glad we are past that - past having to hold her down and her screaming anyway! We waited and waited. I stayed right there at the window trying to catch a glimpse of anyone to let us in so Jess could use the bathroom. She was really uncomfortable sitting in her wheelchair and worrying that she might have an accident. ggggrrrr!!! Finally one lady came into the room and I immediately told her that Jess had been waiting to use the bathroom and couldn't wait any longer! So she rushed to let us in. Apparently someone had called in sick and she had to help with the child getting his blood drawn. Yup... I knew it. At least once Jess was done in the bathroom they took her right back to get her blood and we were outta there!

On an interesting note, I got a message on my answering machine the next morning saying that they lost Jessica's blood and we needed to go back for another stick. They sounded really apologetic. I started to get ticked off and then the very next message was that they found it - it has already been sent out to the lab it needed to go to and that her blood was safe and labeled properly.

I didn't get a call from the PC that day so I held her dig again. Jess was feeling better and I was glad. The next day which was Tuesday, I called the PC and he didn't have the results yet so I had to give the information as to where and when we did the blood work so the secretary could find it. I eventually got a call telling me that Jessica's dig level is normal. Jessica had her usual dose on Sunday around noon, missed Monday's dose and got the blood draw Monday evening (almost 6:00pm). It is possible that her levels were a little high over the weekend and caused her to feel sickly or maybe she just was fighting a bug. The PC told me that she is on kind of a low dose so it could have worked up to a high blood level over time. She had been taking the recalled drug for more than a week. The main thing is that she is OK, I got the new digoxin and she is back on her regular level.

Here is what really caught my eye in the recall:

"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.

Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."

Here is a picture of the Digitek (which was recalled) and Digoxin. It's not the best picture but you can see that one is thicker and a little wider than the other. Can you pick which one was recalled?

What is amazing to me is that it hasn't been on the news, in the newspaper or had any publicity at all! I've heard of several members of the online support group who's pharmacies are giving them a hard time about the recall and won't replace the medication!! This is a very commonly used drug. Jessica has been on it her whole life! The recall admits that they have had injuries occur with the drug mistake and yet some pharmacies are not going to replace the medications? CHILDREN take this medication and are affected by this recall if they are old enough to swallow pills.

My next-door neighbor is encouraging me to call the local news about it. I'm not sure if I will but we'll see. I've been extremely busy with trying to get this medication/recall straightened out, blood work done and getting Jessica's graduation organized. Then we had the graduation Thursday and a party here at our house on Friday. I slept part of today ... until Karl woke me up telling me that Justen was in a car accident! Yeah, he's OK. The other people are OK too (except the mother in the car is a B - och) Our pick-up has seen better days but at least it is drivable. That's a whole other story but it's been quite a busy/emotional week. I'll be posting pictures of Jessica's graduation in my next post.

If you know anyone who has a heart condition and may be using Digitek, please let them know about the recall. You could save their life!