Tuesday, November 12, 2013
More updates on Tara
Today we took Tara to the doctor. With her coming home from school early, just wanted to see how everything was doing physically with her, as well I had some questions that I needed to talk to the doctors office regarding insurance stuff. Anyways...when in there they did height, weight, blood pressure normal stuff. The nurse did her bloop pressure then changed her position and did it again, then asked me what she normally runs for blood pressure. She then got concerned and got the doctor. Her doctor took it then got the other doctor. Needless to say, her blood pressure was 62/34. To low for anyone to operate correctly. With talking to Brian, it has been decided that with all of her medications its to be expected, but still causing all of her symptoms *Nausea, vomiting, sleepiness, pale, dizziness*, yet because of her function we can not pull back on any of her medications. Her team of doctors decided that especially going into cold and flu season (by 10 am today there was 12 kids who had gone home early for fever or vomiting at her school...yikes!) that it is in her best interest to go into "home hospital care". This basically means that she is still enrolled in her school, but she can no longer attend school and will have a teacher come to her house for 5 hours a week to help her keep caught up. We are still working on a few details to be ironed out tomorrow morning, but when she called me to pick her up for the day at 9:30 I don't think either one of us could have predicted that it would be her last day of school for an extended period of time. I don't know how I am feeling about all of it yet. She likes school. Yet I knew for a while that she was having a hard time. This was talked about several times in the last month (its only been just over a month since we got word that her heart was "significantly worse") yet like I said in my last post, we are taking all of our cues from her. I felt like I could "pull the rip cord" at school if I needed too. However this decision I did not have much say in it. I feel like the doctor pulled my rip cord for me *I guess in tandem flights someone with more experience does pull the rip cord, and this is for sure a tandem flight with her doctors!*. I am glad they made the decision (less stress on me), but now I don't feel like I have something to fall back onto on the "what if's".
Wednesday, November 6, 2013
Tara's heart
This has probably been the hardest post I have ever written, yet it could go on and on, so I will try and be as brief as possible. Most of you (all 3 people who read this) already know that Tara's heart took a significant hit recently. I am getting a lot of questions (and I REALLY like that), but I thought maybe I could put the most asked questions here, and refer people to here? So first; this is a little about her. Tara was born healthy. She does not have a CHD (Congenital Heart Defect) which effects 1 in 100 births. Tara rather has an AHD (Acquired heart Defect) Something that she Acquired along her life. In her case somewhere around 8 days old. She got a virus (well, many actually) but it started with a tummy virus, because she was a newborn with NO immune system, that virus turned into a lot of other "things" and caused her entire body to shut down. She was a very sick sick girl on a lot a lot of drugs as one of her Nurses Catherine would say. She kept the nurses and doctors very, very busy and the ones for the first 3 months of her life now all share a very special place in our hearts. With a BIG miracle from the Lord, and the incredible care we received, she is now 6. One of the original viruses that Tara got was something called myocarditis its a big fancy word that means virus that attacks the heart. Her left ventricle took the hit. This myocarditis left her with something called "Dilated Cardiomyopothy" this I included a link, but if you are to lazy to read it, basically means her heart is enlarged and does not pump blood effectively. Since you heart is a major organ (you need it to survive), everything else works a little less than perfect as well. Not to mention the fact remember that tummy virus? The one that shut down ALL of her organs? That has a lot to do with how everything else works in her body. Tara's heart did get a little better in the first several months of he life, where she was able to function at home on 2 meds (Enalapril and Lasix for those curious minds). Her heart was NOT perfect, but it was maintaining. Unless you knew her history, you would never know she had a sick heart. She lived a relatively "normal" life. She has had to many hospitalizations to count (around 30) for various things, but again, relatively normal. Things changed sometime from what we are guessing in September? The doctor does not know when her heart got worse, or what happened, all we know its that on October 4th we were told that her function was "significantly worse". We also do not know if it happened all at once, or if it took months, or weeks to decline so much. We were in maintenance mode with her, as her function for the most part had not changed in 5 1/2 years. Her doctor often referred to her as being "Tara normal" not normal for anyone else but to her, this was normal. So now onto the questions we are getting. (and again, I really like these questions, they make me feel good, and makes me feel like you care for our girl, and want to know more about her, and how you can help).
WILL HER HEART GET BETTER?
This is a hard question to answer, the short answer is, medically no. Think about Tara's heart as a balloon. Her heart is much bigger then other hearts on 6 year olds. So lets blow up your balloon to a bit more then is comfortable on your balloon as far as it can go, right before it pops. When Tara was first sick, this is how her heart was. Now, remember she did get a little better, so take out some air on your balloon. Your balloon is still compromised, but its better. Now, blow up that balloon again (remember, she got worse). It was easier to get to that bigger state, because it has been there before, however its still very compromised. Now, lets say that her heart does get better all the way better, and it goes down to a normal sized balloon. That ballon is still always compromised, it wont ever function right. That is Tara's heart. A balloon once blown up that far will never go back to its normal shape. Just like Tara's heart, it will never go back to its normal state, its stretched to far. However that being said, I serve a big God, who can do GREAT things.
HOW MUCH ARE YOU NEEDING TO LIMIT HER RIGHT NOW?
Tara is an amazing girl. For the most part she is able to self limit. I am taking all of my cues from her. If she is tired, then she needs to rest, if she wants to play, I let her play. The school, doctors and I agree that at this point she should not be doing any PE or recess at school. There is not really any one there that can specifically take care of her and watch her alone. Its safer for her to stay inside. They are doing things for her to make it fun, and we are still trying to brainstorms ways to help transition this part. That being said, she is still in her regular gymnastics class, and doing cartwheels. I do notice a significant decrease in her ability to get up and go, and naps are on the daily right now.
ARE YOU WORRIED?
Yes. This is not as easily answered though. We have complete confidence in her cardiologist (Brian Fagan (he deserves a link, he is amazing, and we love him, and he loves our girl). We followed him to San Diego from here in Pasadena because he is that good. We have daily chats with him right now, and have always had an amazing relationship with him. He does have Tara's best interest at heart, and will do what is best for her. He truly cares for her.
IS SHE A CANDIDATE FOR A TRANSPLANT?
Short answer again, yes. However she is NOT listed for a transplant at this time. A transplant while it is a great last resort, its just that, a last resort. We are not grasping for straws that this moment in time. Tara holds all of the cards. If she is doing ok on what she has, then he (Brian) is ok with that. If she starts loosing weight, not growing, showing that she is having a hard time with her day to day, then we will walk that road. However again its a last resort. Many people believe that a transplant is a fix all end all. It is not. Besides the fact that its major open heart surgery, you take out your heart that you were born with, and put in someone's heart that died *which is hard for me to comprehend, but I am so grateful for all the donor families, they truely give the gift of life in their hardest of times, they bring life to families*. There is many many things that can go wrong in just that surgery alone. Then add in all of the new medications, the risk of infection, the risk of rejection, and a slew of other diseases, there is big risks. Risks we will be ready to take if need be, but at this point it is hard to wrap our brain around it.
WHAT IS THE NEXT STEP?
Tara will let us know. She is on new medications, that at this point have not helped *sad face*. There is a chance that we may need to be admitted for IV medications, but again we will cross that bridge when we get to it. We are in constant communications with her doctor, and are confident he will make the best decision on when we need to do that. Right now its just a lot more appointments.
HOW ARE YOU/KIDS DOING WITH ALL OF THIS?
Jim and I first. We are having a hard time. Life is stressful enough with running a business, and having 4 kids. Put on top of that one that is very sick right now, life is hard. We are trying to navigate and find our groove again to be "normal" but are not there yet. We are in code orange right now. I am looking forward to being code yellow again.
Elijah will get his own, he is taking it hardest of all the kids. He was old enough to see much of what was happening when she was first sick. He remembers that. He is also a teenager. Grace and Mercy here people, grace and mercy. :)
Tori and Jake, they are remarkably well. They were so young when all of this happened that this is still "normal" to them. They know that her "heart is a lot sicker right now". They have also been prepped for more hospitalizations for Tara. That makes them sad, but yet they are excited and wondering how many play dates that can get out of it. (it takes a village, and we are super grateful for our village).
Tara, she again knows that her heart has gotten worse. She says that she feels more "exhausted" and even brought up swimming the other days and said "mom, remember in the summer time when I would swim and swim? I don't think I could even do one lap right now!" *insert break moms heart* We have started talking to her about harder things (transplant possibility, more hospitalizations, things of that stuff), but we are being very kid friendly and in super beginning stages of that. We just don't want to blind side her if and when she does get listed. We have also started talking to her a little about hospital admissions. Since we followed Brian to San Diego to Rady Childrens hospital her hospitalizations for the most part will be down there now. This is hard for her to understand. She loves her "egg doctors" at Huntington Memorial in Pasadena. Frankly, we do too. We know the staff on the pediatric floor, and are "friends" with them now. However will her heart function being so low right now, for the most part, Rady's will be where we are. I have assured her though that they will still have eggs, and soon they will be her friends too.
HOW IS SHE ADJUSTING TO HER NEW MEDICATIONS?
Good, for the most part! We are now on 4, Enalapirl, lasix Coreg, and spironolactone. We increased her coreg last week, so she is having some significant side effects (nausea, tiredness *even more* decrease in blood pressure, so often cold, and low heart rate). Given a few more weeks on it, and those side effects should go away for the most part.
I think that is it for right now. I can always answer more questions and put them on, but for now I am done! :) Thanks for sticking with this long post. If you did you totally win a prize.
Post more questions if you have them, and I will edit, or make another one!
WILL HER HEART GET BETTER?
This is a hard question to answer, the short answer is, medically no. Think about Tara's heart as a balloon. Her heart is much bigger then other hearts on 6 year olds. So lets blow up your balloon to a bit more then is comfortable on your balloon as far as it can go, right before it pops. When Tara was first sick, this is how her heart was. Now, remember she did get a little better, so take out some air on your balloon. Your balloon is still compromised, but its better. Now, blow up that balloon again (remember, she got worse). It was easier to get to that bigger state, because it has been there before, however its still very compromised. Now, lets say that her heart does get better all the way better, and it goes down to a normal sized balloon. That ballon is still always compromised, it wont ever function right. That is Tara's heart. A balloon once blown up that far will never go back to its normal shape. Just like Tara's heart, it will never go back to its normal state, its stretched to far. However that being said, I serve a big God, who can do GREAT things.
HOW MUCH ARE YOU NEEDING TO LIMIT HER RIGHT NOW?
Tara is an amazing girl. For the most part she is able to self limit. I am taking all of my cues from her. If she is tired, then she needs to rest, if she wants to play, I let her play. The school, doctors and I agree that at this point she should not be doing any PE or recess at school. There is not really any one there that can specifically take care of her and watch her alone. Its safer for her to stay inside. They are doing things for her to make it fun, and we are still trying to brainstorms ways to help transition this part. That being said, she is still in her regular gymnastics class, and doing cartwheels. I do notice a significant decrease in her ability to get up and go, and naps are on the daily right now.
ARE YOU WORRIED?
Yes. This is not as easily answered though. We have complete confidence in her cardiologist (Brian Fagan (he deserves a link, he is amazing, and we love him, and he loves our girl). We followed him to San Diego from here in Pasadena because he is that good. We have daily chats with him right now, and have always had an amazing relationship with him. He does have Tara's best interest at heart, and will do what is best for her. He truly cares for her.
IS SHE A CANDIDATE FOR A TRANSPLANT?
Short answer again, yes. However she is NOT listed for a transplant at this time. A transplant while it is a great last resort, its just that, a last resort. We are not grasping for straws that this moment in time. Tara holds all of the cards. If she is doing ok on what she has, then he (Brian) is ok with that. If she starts loosing weight, not growing, showing that she is having a hard time with her day to day, then we will walk that road. However again its a last resort. Many people believe that a transplant is a fix all end all. It is not. Besides the fact that its major open heart surgery, you take out your heart that you were born with, and put in someone's heart that died *which is hard for me to comprehend, but I am so grateful for all the donor families, they truely give the gift of life in their hardest of times, they bring life to families*. There is many many things that can go wrong in just that surgery alone. Then add in all of the new medications, the risk of infection, the risk of rejection, and a slew of other diseases, there is big risks. Risks we will be ready to take if need be, but at this point it is hard to wrap our brain around it.
WHAT IS THE NEXT STEP?
Tara will let us know. She is on new medications, that at this point have not helped *sad face*. There is a chance that we may need to be admitted for IV medications, but again we will cross that bridge when we get to it. We are in constant communications with her doctor, and are confident he will make the best decision on when we need to do that. Right now its just a lot more appointments.
HOW ARE YOU/KIDS DOING WITH ALL OF THIS?
Jim and I first. We are having a hard time. Life is stressful enough with running a business, and having 4 kids. Put on top of that one that is very sick right now, life is hard. We are trying to navigate and find our groove again to be "normal" but are not there yet. We are in code orange right now. I am looking forward to being code yellow again.
Elijah will get his own, he is taking it hardest of all the kids. He was old enough to see much of what was happening when she was first sick. He remembers that. He is also a teenager. Grace and Mercy here people, grace and mercy. :)
Tori and Jake, they are remarkably well. They were so young when all of this happened that this is still "normal" to them. They know that her "heart is a lot sicker right now". They have also been prepped for more hospitalizations for Tara. That makes them sad, but yet they are excited and wondering how many play dates that can get out of it. (it takes a village, and we are super grateful for our village).
Tara, she again knows that her heart has gotten worse. She says that she feels more "exhausted" and even brought up swimming the other days and said "mom, remember in the summer time when I would swim and swim? I don't think I could even do one lap right now!" *insert break moms heart* We have started talking to her about harder things (transplant possibility, more hospitalizations, things of that stuff), but we are being very kid friendly and in super beginning stages of that. We just don't want to blind side her if and when she does get listed. We have also started talking to her a little about hospital admissions. Since we followed Brian to San Diego to Rady Childrens hospital her hospitalizations for the most part will be down there now. This is hard for her to understand. She loves her "egg doctors" at Huntington Memorial in Pasadena. Frankly, we do too. We know the staff on the pediatric floor, and are "friends" with them now. However will her heart function being so low right now, for the most part, Rady's will be where we are. I have assured her though that they will still have eggs, and soon they will be her friends too.
HOW IS SHE ADJUSTING TO HER NEW MEDICATIONS?
Good, for the most part! We are now on 4, Enalapirl, lasix Coreg, and spironolactone. We increased her coreg last week, so she is having some significant side effects (nausea, tiredness *even more* decrease in blood pressure, so often cold, and low heart rate). Given a few more weeks on it, and those side effects should go away for the most part.
I think that is it for right now. I can always answer more questions and put them on, but for now I am done! :) Thanks for sticking with this long post. If you did you totally win a prize.
Post more questions if you have them, and I will edit, or make another one!
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