Thursday, June 5, 2014

Schools out for Summer.

Schools out. I have the Brave Heart quote in my head "It's all for nothing if you don't have freedom" which rings true in so many ways. You need a break, kids need a break, If you don't have the freedom to live your life, you will never live, you will just go through life. Summer is one that I have always looked forward too. I get just as giddy now as I did when I was in school. The thought of waking up with my babies and lounging the mornings away drinking coffee watching them play games together around my coffee table seriously makes my heart happy. The having no plans when you tuck them into bed, then waking up and thinking "today is a beautiful day for the beach, LETS GO" The thought that if the mood struck and we needed a Havasu run that we could literally pack and be there in 5 hours and be welcomed with open arms by Aunts and grandparents makes me happy. I love summer. No stress, swimming all day, lounging with a cocktail in my hand at night watching them play out side, giddy I tell you. I seriously love summer.
This summer however, this summer, its different. We should be in the pool right now, its the first day of summer, the last day of school.  However for the next several weeks we won't be. Tomorrow we should be driving to Santa Barbara for a weekend away with an organization that takes special needs kids out to surf. We won't be going.  Next week we should be driving out to Havasu to spend a few days with family out there. We won't be going. Instead this month is filled with Zio Patches that monitor your hearts rhythm that can not be submerged in water, heart cauterization procedures with overnights stays in the CVICU (cardiovascular intensive care unit), 10 day recovery periods from her surgery, all things that if you would have told me a year ago would be the way we were spending our summer I would have told to get behind me satan. But its happening, its real, and its seriously bringing me down. Trying to stay positive that its going to be awesome, and there is nothing to worry about its getting hard. Especially when I have a 6 year old screaming and crying back to me saying "ITS NOT FAIR!!!! I HATE CARDIMYOPATHY!!!" I hate it too, and I shake my fists in the air and say "damn you cardiomyopathy" at least twice a day right now. Wondering how many Slurpee's she can be bought with to get her out of her funk, How many times I can convince her that we don't need to go swimming, we could have way more fun playing in the sprinklers.
This summer is different, but this school year has been different too. This summer we started school like any other year. Come November I only had 3 kids in school, Tara was taking out due to exhaustion. Come January I had 2 kids in school and Elijah doing online home studies (which worked out great, but looking forward to him going back next year).  Tara finally started going back to school full time 9 days ago...yes, she had 9 full days of school before school was done. She went back to school with a full time nurse, and next year will continue with her. Next year we have also chosen to keep her in first grade for another year. Technically she "passed" first grade, and could continue moving on to 2nd grade, but she is behind. She missed 5 full months of school, and even now her stamina is not up to where it should be. So Jim and I together talked about it and brought it up to her teacher. Her teacher left the decision up to us, but agreed that it would be the best decision for her. I love that she supported us and encouraged us to do what we felt was right for her given the circumstances. So next year she will continue with an leg up on the up coming first graders instead of feeling that she is 2 steps behind with the 2nd graders. This also gives us the time we need if she needs to be out again for what ever reason.
This summer is different, but I am still looking forward to turning off my alarm and a cocktail in my hand watching the kids play together.
*In case you are curious we do have a date for her heart Cath of June 17th* More on that on another date.

Monday, April 7, 2014

Now what?

Whats that now? I don't understand? How? Why? Come again? Can you please repeat that a little slower with some valium in my vodka. Yup, this is me on Tuesday of last week.
Sometimes dates are embedded into your brain. Dates that will never be erased from your memory. For me, my kids birthdays, my anniversary, your best friends birthday from Junior High and High school (Nov. 22, Happy Birthday Lisa!), The date your daughter crashed, and the doctors told you to say goodbye to her (September 14, 2007), The date the specialist for cardiomyopathy called and shattered my world...again. April 1st. The day that many people play funny, cruel, or insensitive jokes on other people was the day that the Cardiomyopathy Dr. Jeffery Towbin called my phone as I am walking into the state office to try and get better insurance (or at least help with our current insurance) and told me that he was "greatly concerned" for my daughters heart.  You see, a few months ago upon the request of our awesome cardiologist we started giving information to Dr. Towbin, to get a second opinion on Tara's heart. Why it was getting worse after being stable for so long? Are we on the right tract for medications? What else can we do? I knew the conversation had the potential to be hard, but honestly I never expected it to be. Kind of like that first cardiologist appointment that I ever went to on my own after Tara was finally discharged from the hospital after 3 months. I got dressed up, put on make up, ironed up my nicest pair of jeans I owned (who ever irons jeans?), even did my hair. I went into that appointment expecting to hear the words Cardiomyopathy? No that resolved itself some time ago, her heart is completely healed. What I got instead was a crash course on dilated cardiomyopathy and the cruel statistics and what my world would have in store for me with it. Well that and the knowledge that when you ugly cry, snot will remove water proof mascara. This is kind of how I felt on April 1st. When Dr. Towbin starts explaining the workings of Tara's heart, and how her heart is "unique" to other children with Dilated Cardiomyopathy and her snapping motion her heart does when it relaxes instead of a fluid movement. That her left atrium despite not having extra fluid volume had an increase in pressure in that chamber, and that there was a stiffness in her left ventricle causing the fluid build up and the dilation of her left atrium.  (yup more medical mumbo jumbo that I wrote down on chicken scratch paper then immediately called our local cardiologist to get a run down on what that meant in the real life world).  What this means is she has Restrictive Cardiomyopathy as well as the Dilated Cardiomyopathy, and from his findings he does not think the one caused the other....basically dumb luck...again. The link I provided is from the american heart association on a little run down about Restrictive Cardiomyopathy, but basically it is a stiffening in the lower chambers of the heart (ventricles). The hearts rigid walls fail to relax and expand "restricting" the ability of the heart to fill with blood. While the heart is pumping it is unable to supply enough blood to the body (causing syncope episodes *passing out*, drops of blood pressure, low heart rates, all things Tara has been experiencing recently). This puts pressure on the upper chambers of the heart (atria) and they become enlarged. In advanced stages of the disease the heart may not pump blood effectively and blood may back up into the liver and lungs as a result of congestive heart failure (Tara is currently in congestive heart failure). What this means to us? Well the short story is we need to figure out what caused her RCM (restrictive cardiomyopathy), and make sure the other kids are not at risk (they will all be screened).  They will be doing an MRI with contrast soon (the order has been put in at Rady Childrens, but we do not have a date yet on when) to find out a little bit more about her heart (this has the potential to be a risky procedure for Tara so please keep her in prayer), there is also talk of her getting an AICD (internal cardiac defibrillator) put in place because of the much increased risk of sudden cardiac arrest.  I will (try) and update this sight when I know more, but for the most part, please just pray.  I feel like yet again we are walking uncharted territory, and again my daughter is baffling doctors.
Again, prayers are much appreciated. Especially in the next month or so when we will be finding out more information on this disease, and how it is going to effect our family.

Tuesday, February 4, 2014

Dear Mom;

Today I saw you, so young, so in love. How are you even old enough to have a baby? I see your husband (or is he your boyfriend?) wearing a High School Water Polo sweatshirt, instantly my eyes are on you, and I over hear your conversation. You find out today about your sons heart condition. I want to run up to you, and hug you and tell you that it will be okay. It might not. I want to tell you that you will live to tell about it. You might not feel like it.  I want to tell you that you might be sitting here in the cardiologist office like us in 6 years wanting to hug another mom. You might not. I want to tell you that your son will be okay. He might not.  Life sometimes gives you crazy twists and turns. Hold on, and try and enjoy the ride. I want to tell you that you will find your way.  You might not. I want to tell you no matter what your faith is like now, you will pray like a Pentecostal grandma.  I want to tell you about the amazing support systems out there. I want to tell you that you are not alone.  That 1 in 100 babies are born with a heart defect. I do not want to tell you that 4,000 of them will not make it to their first birthday. Maybe your son will. I want to tell you that heart defects are the # 1 birth defect in the world. I don't want to tell you its also the # 1 Killer of all children. More then all the childhood cancers combined, yet when you tell your friends and family about your sons defect they will be shocked because they just think "It doesn't happen". I am here to tell you, it does.  Some days you will feel like you can not go on. You can. Some days you will feel like you are getting a crash course on your MD. You are.
Dear Mom, One day you will over hear another mom getting the news no mother should have to hear, that her child too will be born with a heart defect. You will want to hug them like I did to you.  You will want to tell them that it will be okay. It might not. Hug them anyways.

Friday, December 13, 2013

Cardiology the Latest and Greatest

Well, maybe not the greatest, but some good news. Tara's ejection fraction went up 9%.  Her short Infarction (which her doc is most concerned with) did not, but there is defiantly some marginal improvement which is good.  Now that is the hard part, the part that I have a hard time explaining. Her function got better right? Yes, technically yes. We are not up to where we were before, in fact far from it, and we will not ever be able to get up there again.  Her doctor said something in passing as we were leaving and it cut like a knife, not at the time, but later when I had time to process it all. He said "we don't necessarily need an echo next visit, right now we can play the numbers game all we want, but the issue still remains".  The issue? Her heart is still damaged, in fact it is damaged beyond repair, so playing a numbers game means nothing.  We might gain a few points here or there, but she is still in Congestive Heart Failure. Short of a miracle we will be getting a heart transplant and trading her damaged heart for slightly used heart that a donor no longer needed, and a family so generously gave. Yes, the big "T" word was talked about this last visit. His exact words were something along the line of "Its not that we need it now, but we would be naive to think it won't happen". So my reality world is not as much fun as my naive world.  Other things that we talked about, the fact that we are getting some oxygen for home use. We spent some time up in Big Bear over thanksgiving with some friends. It did not got as well as it could have. She got altitude sickness. Her sats were 88-90 all night long. That does not help a girl who is already in CHF. So we will have some oxygen next time, as well, should the need arise and we need it at home.  WE also talked about talking to Dr. Jeffery Towbin, I guess he brought up her case to him a bit ago (when we first had the big drop), but more in depth we will be talking.  Like having a 3 way call. So as I am typing this her records are being sent to Ohio to have the best Cardiomyopothy doctor look at her case and give suggestions. The transplant doctor at Rady will be looking at her case around February or March. 
So yes, all these things of still moving forward with her heart, yet we got a 9% improvement makes me want to scream. WE IMPROVED. But the long and short of it, is its not a numbers game. Her heart despite the small improvement is failing. 
We also increased her medications yet again. Which in short means cue headaches, dizziness, vomiting, and sleepy girl. I was finally started thinking we were getting back to somewhere near normal again with her, what ever that is. We will still keep her out of school til after Christmas break, and go from there. I could totally use a few hours of her in school right now….Can anyone say Santa has a 6 year old tagging along!  

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).
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.
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.
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.
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.
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.
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.
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!

Thursday, August 29, 2013

The moment when I call your bluff

This post has been sitting in my "Que" for quite some time. With the beginnings or the ending, but never the middle. However today is the day when I lay down my cards, call your bluff and say "bull sh*t". 
Everyone says it, heck, I have probably written a blog about it, and say it often. A a church going girl, I have even believed it and said it to myself. "you got this Kat, God wouldn't give you more than you can handle". Then I got to thinking would he? So I looked. Where is the verse in the bible that says He wont give me more than I can handle? I should have that bad boy tattooed on my forehead, and written on my bathroom mirror or framed next to my bed so when I wake up to deal with one of the kids 8,000 times that night I can calmly look over at the cute little pinterest inspired frame next to my bed and say "oh yes, thats right, the bible says God wont give me any more than I can handle". Thats where this comes from.  I looked, I read my bible, I googled, I can't find it. Its not there. Like I said, I am calling your bluff, and mine to.  Now, if I was being tempted? we got that covered. God wont tempt me more than I can handle (1 Cor 10:13) that has nothing saying about being able to handle things. Things that he does give us? Burdens, yup that sounds fun. We can bring our burdens to the Lord, but it doesn't say he will take them away. Trials? We get trials of all different kinds. Yippee Can't wait.  So when we say "God wont give you any more than you can handle" to the grieving mom who is saying their last goodbye to her daughter. They sound nice and sweet, but its a lie.
Can a 5 year old little boy handle the death of their dad?
Can a wife handle being the sole survivor of a car crash killing her 3 kids and husband?
Can a mom handle their child being in and out of the hospital to many times to count?
Can the mom of a child with brain cancer handle it?
The short answer to these questions I think is no, they can't handle it.
What God does promise us? A Hope. A Future. So that I can live with. I don't need to handle all that God has thrown at me. I am ok to have a pity party. I am ok to melt down in the middle of the post office just because I don't want to "handle" my situations anymore. I am ok to ask for help, I don't need to feel like I have to handle my situation because God said He wouldn't give me more than I can handle...He never said it.  Trials, he promised and from those trials he will refine us and make us into the person he called us to be.