Monday, December 7, 2009
Nothing big scheduled for this week
Jolianne is having a pretty good day today. She is a little more swollen today than she was yesterday. They have increased her diuretic again today in an effort to relieve it a little. The doctor told Jeremy that if her stomach doesn't get any smaller, they are going to have to put drainage tubes in her stomach to get the fluid out. He said that if she continues to have respiratory problems they may have to do her 3rd procedure sooner than later. They just have to see how it goes with her. It is possible that she will need to stay in the hospital until all of her heart defects are fixed. It will all depend on Jo Jo.
Sunday, December 6, 2009
Good Weekend
First of all I want to say Thank You. Thank you to everyone that has sent us such wonderful words of encouragement and love. It fills my heart to the brim to know that there are so many friends and family praying for Jolianne daily. Some of the people I know and some of them I have never met before. It amazes me that she has touched the heart of so many.
Jo Jo had a pretty good weekend. Me, Jeremy, Andy and Ronnie went to visit Jolianne as a family of Saturday. We took a Christmas movie for Ronnie to watch so he wouldn't be too restless. It felt good to know that all of my kids were at the same place and the same time. I can't wait for the day when we can do that everyday!!! She is experiencing some swelling again, but that is pretty normal for her when she is on the vent. They are giving her some extra medication to help her lose some of the water weight. Our goal for the week ahead is to slowly get her off the vent and get some of this water off. I hope that she is able to handle not being on the vent. I am hoping that after her collaterals have been fixed she won't have as much trouble with her lungs. I also miss holding her and getting her dressed. She has some super cute Christmas outfits that I am dying to try on. My sister-in-law Kim brought her a few Christmas shirts and I laid one of them on her chest, it covered her entire body!!! I told her that she can wear it as a dress instead. We I get her clothes together I think how small they are and then when I get to the hospital they seem so big. She is growing pretty big but she is still very small.
I will keep you updated on how she is doing.
Love,
Crystal
Jo Jo had a pretty good weekend. Me, Jeremy, Andy and Ronnie went to visit Jolianne as a family of Saturday. We took a Christmas movie for Ronnie to watch so he wouldn't be too restless. It felt good to know that all of my kids were at the same place and the same time. I can't wait for the day when we can do that everyday!!! She is experiencing some swelling again, but that is pretty normal for her when she is on the vent. They are giving her some extra medication to help her lose some of the water weight. Our goal for the week ahead is to slowly get her off the vent and get some of this water off. I hope that she is able to handle not being on the vent. I am hoping that after her collaterals have been fixed she won't have as much trouble with her lungs. I also miss holding her and getting her dressed. She has some super cute Christmas outfits that I am dying to try on. My sister-in-law Kim brought her a few Christmas shirts and I laid one of them on her chest, it covered her entire body!!! I told her that she can wear it as a dress instead. We I get her clothes together I think how small they are and then when I get to the hospital they seem so big. She is growing pretty big but she is still very small.
I will keep you updated on how she is doing.
Love,
Crystal
Saturday, December 5, 2009
I Hope. I Want. I Know.
Three simple statements, I used to put these into the same category. The key to success. Hoping that something will happen, wanting something to happen, knowing that something will happen. They are very different to me now. Let me explain...
I HOPE
I cried today. The kind of cry that leaves you trying to catch your breath. The kind of cry that you do when you are alone because, quite frankly, you don't want to me comforted. You want to get it all out. You need to get it all out. When scary things happen, tears find their way out, but not like this. This is the cry that you do when the numbness of the event wares off. When reality creeps in and takes a hold of your soul. The kind of cry that leaves you curled up in a ball on your bed praying that sleep will find you and take this pain away. I know that this will sound really horrible, but I couldn't wait to leave the hospital yesterday. I had to leave. I didn't want to leave Jolianne behind, I wanted to leave the fear behind. The uncertainty of what will happen next. It followed me home and haunted my dreams all night. I HOPE that Jolianne will never have to experience something like that again. I HOPE that the fear will get better. I HOPE that this is the last time I will feel so helpless. The reality is all of these things will happen again. I am not hopeless, I believe that everything happens for a reason, but I do acknowledge that it is not in my hands. God has plans for each one of us. It does not always turn out the way we want, but we do have to realize that he is in control, whatever His will is, that's what will be.
I WANT
The other day I was looking through Ronnie's backpack and found the schedule of events at school for the month of December. I was so excited because I know he has been working on a Christmas play. I scrolled through the month and came to December 17th. Kindergarten Music Program. That's what I was looking for, but wait a minute. There is something else happening on December 17. I can't figure it out just yet so I ask my older son Andy, "When is your Christmas Concert?". Andy plays percussion in the 7th grade band and I know that he has been working hard on his Christmas Concert as well. He walks away from me and I say a little prayer, "Please don't let it be the same day, please don't let it be the same day." He hollers at me from the desk, "December 17.". Of course. That is a logical thing right. The school planned two music programs on the same night at different schools. There is no one in the world that might have a 7th grader and a Kindergartner in the same household. I look at the times, Ronnie is at 6:15 and Andy is at 7:00. No problem right! Of course there is a problem, that's the way my life works now. I AM NOT ALLOWED TO MAKE ANY PLANS. Both of my children are so excited about their events, both of my children would like me to be there for their entire program, both of my children deserve their parents to be there to support their hard work. We haven't even thrown Jolianne into the mix. What if she has another episode that requires Jeremy and I to be at the hospital on that evening. I WANT to be able to be there for each one of my children. I WANT to be supportive to things that they are interested in. I WANT them to know that they can count on me to be there in their time of need. But it doesn't work that way. I can want and want all day long but, at the end of the day, I am one person. I can't be three places at the same time. I HOPE that I can work it out to watch both Christmas programs and experience the beauty of music with both of my boys this year!!!
I KNOW
This will be a short section because there is not a whole lot that I know!! :) I KNOW that I love my family dearly and that they love me back. I KNOW that someday I will be able to breathe again. I KNOW that I have a whole new respect for life and how fragile it is. I KNOW that eventually everything will be OK. I don't know exactly when or how we will arrive at that point, but it will come.
I KNOW THAT GOD HOLDS MY HAND EVERY DAY. HE BRINGS ME PEACE AT NIGHT AND HOPE THE NEXT DAY. HE WILL NOT LEAVE ME, THIS I KNOW FOR SURE!!!!!
I HOPE
I cried today. The kind of cry that leaves you trying to catch your breath. The kind of cry that you do when you are alone because, quite frankly, you don't want to me comforted. You want to get it all out. You need to get it all out. When scary things happen, tears find their way out, but not like this. This is the cry that you do when the numbness of the event wares off. When reality creeps in and takes a hold of your soul. The kind of cry that leaves you curled up in a ball on your bed praying that sleep will find you and take this pain away. I know that this will sound really horrible, but I couldn't wait to leave the hospital yesterday. I had to leave. I didn't want to leave Jolianne behind, I wanted to leave the fear behind. The uncertainty of what will happen next. It followed me home and haunted my dreams all night. I HOPE that Jolianne will never have to experience something like that again. I HOPE that the fear will get better. I HOPE that this is the last time I will feel so helpless. The reality is all of these things will happen again. I am not hopeless, I believe that everything happens for a reason, but I do acknowledge that it is not in my hands. God has plans for each one of us. It does not always turn out the way we want, but we do have to realize that he is in control, whatever His will is, that's what will be.
I WANT
The other day I was looking through Ronnie's backpack and found the schedule of events at school for the month of December. I was so excited because I know he has been working on a Christmas play. I scrolled through the month and came to December 17th. Kindergarten Music Program. That's what I was looking for, but wait a minute. There is something else happening on December 17. I can't figure it out just yet so I ask my older son Andy, "When is your Christmas Concert?". Andy plays percussion in the 7th grade band and I know that he has been working hard on his Christmas Concert as well. He walks away from me and I say a little prayer, "Please don't let it be the same day, please don't let it be the same day." He hollers at me from the desk, "December 17.". Of course. That is a logical thing right. The school planned two music programs on the same night at different schools. There is no one in the world that might have a 7th grader and a Kindergartner in the same household. I look at the times, Ronnie is at 6:15 and Andy is at 7:00. No problem right! Of course there is a problem, that's the way my life works now. I AM NOT ALLOWED TO MAKE ANY PLANS. Both of my children are so excited about their events, both of my children would like me to be there for their entire program, both of my children deserve their parents to be there to support their hard work. We haven't even thrown Jolianne into the mix. What if she has another episode that requires Jeremy and I to be at the hospital on that evening. I WANT to be able to be there for each one of my children. I WANT to be supportive to things that they are interested in. I WANT them to know that they can count on me to be there in their time of need. But it doesn't work that way. I can want and want all day long but, at the end of the day, I am one person. I can't be three places at the same time. I HOPE that I can work it out to watch both Christmas programs and experience the beauty of music with both of my boys this year!!!
I KNOW
This will be a short section because there is not a whole lot that I know!! :) I KNOW that I love my family dearly and that they love me back. I KNOW that someday I will be able to breathe again. I KNOW that I have a whole new respect for life and how fragile it is. I KNOW that eventually everything will be OK. I don't know exactly when or how we will arrive at that point, but it will come.
I KNOW THAT GOD HOLDS MY HAND EVERY DAY. HE BRINGS ME PEACE AT NIGHT AND HOPE THE NEXT DAY. HE WILL NOT LEAVE ME, THIS I KNOW FOR SURE!!!!!
Friday, December 4, 2009
Cath Lab went Great
I am very happy to report that Jo Jo is out of cath lab and doing well. They were able to coil the two major arteries that were causing all of the trouble. They were both on her right side of the body. The collaterials on her left side are very small and not causing any trouble at all. She said that the next step will be to get her off the vent and up to the 8th floor!!! I am so grateful for all of the prayers and support!!! What a turn around from yesterday, God is with us all the time. I hope that this is an open door for a new start with Jolianne.
Phase two of surgery today.
Yesterday was a very scary day for us. We almost lost Jolianne. She stopped breathing and her heart rate went down to 40 beats per minute. Normally it is 160 beats per minute. She had a blockage in her breathing tube which was causing her to not be able to catch her breath again. I can't quite put into words the experience right now, but I can tell you that things have changed considerably. In my heart and in my mind things are different. They hospital has become a very scary place to be. I am in fear most of the time. Every time I see her start to choke or her heart rate go down I have flash backs to what happened yesterday.
They are going to go ahead with part two of the surgery this morning. The attending physician said that we need to get her in A.S.A.P. All of the problems that she is having is from a very big collateral on her right side. He said that she will be a completely different person when she comes back. We have also come to the realization that she has something wrong with her right arm. I have suspected a problem for a few days now, her arm is completely limp. When you hold her hand she does not move her fingers at all, when you lift the arm up it flops back down. I hope that her arm recovers and she doesn't have any trouble with it. She is also bleeding a little from her new IV line. They had to put a line in her Jugular Vain in her neck. I hope that it doesn't turn in to a big problem. It seems the longer we are here the more problems we encounter. I will write again when I know something about her Heart Cath.
Love,
Crystal
They are going to go ahead with part two of the surgery this morning. The attending physician said that we need to get her in A.S.A.P. All of the problems that she is having is from a very big collateral on her right side. He said that she will be a completely different person when she comes back. We have also come to the realization that she has something wrong with her right arm. I have suspected a problem for a few days now, her arm is completely limp. When you hold her hand she does not move her fingers at all, when you lift the arm up it flops back down. I hope that her arm recovers and she doesn't have any trouble with it. She is also bleeding a little from her new IV line. They had to put a line in her Jugular Vain in her neck. I hope that it doesn't turn in to a big problem. It seems the longer we are here the more problems we encounter. I will write again when I know something about her Heart Cath.
Love,
Crystal
Thursday, December 3, 2009
Yesterday they had to stop Jo Jo's feeds because her belly was getting a little too extended. They took an x-ray this morning and said that everything looks ok. She is scheduled for her Heart Catheterization today. They said that she would be 3rd case so it will be later in the day when they take her back. Closer to 3 pm or 4pm. Because she is the last case it is possible that they will move her to tomorrow if the other two cases take longer than expected. They are sedating her now so that she can get plenty of rest. It has become so hard for her to do normal functions that they feel it is just better if she sleeps so that she doesn't keep having her heart rate and breathing dip down so low. I really hope that they can go in and fix some of her collateral arteries today. I hate to see her in such a critical condition. It seems like she is worse off now than she was before her surgery. I know that they said it would be a two step process, they failed to mention that in between procedures that she would suffer so much. Her hand is still swollen from the blood clot. They said last night that it would take a few weeks before it gets back to normal. Originally we were told a few days. Things change everyday. I just feel so worn down at this point. We are on day 65 with no expectations of when she will possibly get to go home. I try to have goal markers but like I said, things change daily. One minute they are talking about moving her out of ICU and the next minute they are putting her back on the vent. At first we hoped that she would be home for Christmas, then we hoped that she would be home at the first of the year. I just don't know anymore. She is on her own schedule, not mine. I have gotten to where I dread calling to check on her because I am so scared of what they will tell me. There was a point where it was always, "She is doing fine, just resting." Now when we call there is always something scary going on. I just wish that she could be better. I want her to be comfortable and happy. Maybe they can get some things resolved today and get her on the way to recovery.
Tuesday, December 1, 2009
Lost in the land of Oz
I was at the hospital today visiting Jolianne and I read to her from our Wizard of Oz book. The part of the book that were were reading today was where Dorothy is on her way to Emerald City and she stops to talk to a munchkin family. The munchkin said to Dorothy, "On your journey you will see beautiful things but you will also experience some rough times, but it is worth it if you make it to Oz and the Wizards helps you get home." My mind started to wonder and I thought about Jo Jo. She is in her own little Land of Oz and all she wants is to make it home. We see good days and we see bad days, sometimes back to back. We have to make it to the Wizard so that Jolianne can get her heart fixed and come home to us. It is amazing that you can hear a story a hundred times but one day it fits perfectly into your own life. Sometimes I need to ask the Wizard for some brains, and some days I need courage, and sometimes my heart feels broken and I need a new one of those too. But no matter what obsticles we encounter we still have to keep pushing, we still have to keep fighting, we still have to keep steadfast to our journey. Like the Wizard says at the end, "It was inside you all the time!" Some days we just need to dig a little deeper to find what we are looking for.
I love you Jolianne, it tears at my heart to see you in pain. I know that you are struggling right now. You are such an inspiration to all of us. You have so much courage and strength. You endure every thing that comes your way. I know that you will grow to be a strong, smart and caring young woman. You are my strength, you carry me through each day. I can't put into words how much I miss you when I have to leave the hospital each day. I look forward to being able to hold you in my arms again.
We're off to see the Wizard, the Wonderful Wizard of Oz........
I love you Jolianne, it tears at my heart to see you in pain. I know that you are struggling right now. You are such an inspiration to all of us. You have so much courage and strength. You endure every thing that comes your way. I know that you will grow to be a strong, smart and caring young woman. You are my strength, you carry me through each day. I can't put into words how much I miss you when I have to leave the hospital each day. I look forward to being able to hold you in my arms again.
We're off to see the Wizard, the Wonderful Wizard of Oz........
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