Over the last few weeks Justice has been fighting infections in all her pin sites. This, along with severe pain in her back and neck, has caused her to need a lot of heavy pain killers. We were also having to take her out of traction more and more to control this pain, infections and muscle spasms. Yesterday morning when the doctor call we decided the benefit we were getting from the traction were no longer out weighing the problems it was causing. Although it would have still been safe for her to have the spinal fusion with the infections, it was better if she didn't have them and without taking the halo off they were not going to even start clearing up. So during our phone call we decided to remove the halo ASAP.
This left us with two choices, to remove it in his office or go to the O.R. Removing it would only take about 10 min. but he could not give her anything for the pain if it was done in clinic. Option two was to be put under in the O.R. but Justice is now scared to death of the CARES Unit and considers all admissions there to be the same whether it's brain surgery or an MRI, if we're there she panics like it's a huge surgery. (I can't really blame her) But we chose the O.R. Unfortunately, Justice had her tube feeding all night so she had to wait 8 hours for them to put her under so that left 8 hours for her to panic.
In the end she did fine. The cleaned a lot of the infection out of the pin sites and they look and feel so much better. Hopefully we won't lose the progress we made over these last 6 weeks but if we do than God's will be done.
She tried so hard and did more than I could imagine a little girl could do. I am so proud of her. I wish she didn't have to have her spine fused on Monday. I wish I could just hug her and tell her she's safe and will never have to hurt like this again. When I've talked to doctors about her anxiety, they tell me to tell her these surgeries are making her better. I don't know if I can do that. What is better? To me, better implies this will stop and so far there's no end in site. When she was born they told us 3 months and she'll probably be much better. At 3 months she was recovering from huge surgeries. Then it was 1 year. Then 3 years. Then definitely by 5. That's when we made the switch from she'll GET better to she's GETTING better. Now she's been getting better for over 40 surgical procedures and 12 years. No, I can't tell her they're making her better. I just tell her they are trying to fix whatever it is they are currently working on. I want her to have hope but I never want her to think I misled her. She's a smart girl, she knows when they do a surgery it hurts, she will probably get worse before it heals and most likely there will be some side effect from it that was not expected but is actually worse then before the surgery.
I don't know...Jesus addressed how many times you should ask for forgiveness but I wish he would have said something about how many times a mother will have to plead with God for her child's life. Sometimes it's not about getting better, it's about staying alive.
(Monday, Jan. 16th, Justice will have her spine fused from T2 - L2 or maybe T3. Please keep her in your prayers)
Friday, January 13, 2012
Saturday, September 24, 2011
Halos Are What Angels Wear
Levi and I went to see Justice's orthopedic surgeon today for what we thought was going to be all about the details of her upcoming spinal rod surgery. We already knew it was scheduled for Halloween but for a surgery this big, it takes a few appointments to run tests, take x-rays, MRI's and what nots...
For this appointment we were told we didn't have to bring Justice so she spent the day with her beloved respite provider.
Well, details of the surgery was not what was given to us. After taking Justice's x-rays to a spine conference and gathering opinions from multiple doctors in his field, our doctor decided that Justice may be a good candidate for using traction before her actual spinal rod surgery.
What this means is they will attach a halo on her head. Then she will be in traction with weights pulling up on her halo. She would have to be like this for 4-6 weeks. She will be required to be in a specially made wheelchair or a hospital bed the entire time. Then after the 4-6 weeks she will have the spinal rods put in.
They can't tell us for sure that the traction will or will not help her in any way but are confident it will make her spine more flexible and therefore get a better correction when they put the rods in. She is going to need her spine fused and the correction they get at the time of surgery is it. They will never be able to straighten her spine any further so improving her curve by an extra 10-20 %may be worth the 4-6 weeks.
This is such a big decision for us to make. They could do the halo surgery on Halloween or later that week or she could just go ahead and have her rods put in. If she gets the halo, spinal rods would probably go in sometime in Dec.
We decided to ask Justice what she preferred and she said "Halos are what angels wear." She could not be anymore right. She is an angel and has more grace, strength and courage than the rest of our family put together. She said she wants to have the halo and try the traction because she wants her back to be as straight as possible.
We still will need her neurosurgeon to okay the halo and traction. He is not in his office this week so hopefully next week he will be back and help us make a safe decision.
Please continue to pray for our family and the doctors involved. This is not an easy case for them and I'm sure they want to give us the best advice and do what is best for Justice.
For this appointment we were told we didn't have to bring Justice so she spent the day with her beloved respite provider.
Well, details of the surgery was not what was given to us. After taking Justice's x-rays to a spine conference and gathering opinions from multiple doctors in his field, our doctor decided that Justice may be a good candidate for using traction before her actual spinal rod surgery.
What this means is they will attach a halo on her head. Then she will be in traction with weights pulling up on her halo. She would have to be like this for 4-6 weeks. She will be required to be in a specially made wheelchair or a hospital bed the entire time. Then after the 4-6 weeks she will have the spinal rods put in.
They can't tell us for sure that the traction will or will not help her in any way but are confident it will make her spine more flexible and therefore get a better correction when they put the rods in. She is going to need her spine fused and the correction they get at the time of surgery is it. They will never be able to straighten her spine any further so improving her curve by an extra 10-20 %may be worth the 4-6 weeks.
This is such a big decision for us to make. They could do the halo surgery on Halloween or later that week or she could just go ahead and have her rods put in. If she gets the halo, spinal rods would probably go in sometime in Dec.
We decided to ask Justice what she preferred and she said "Halos are what angels wear." She could not be anymore right. She is an angel and has more grace, strength and courage than the rest of our family put together. She said she wants to have the halo and try the traction because she wants her back to be as straight as possible.
We still will need her neurosurgeon to okay the halo and traction. He is not in his office this week so hopefully next week he will be back and help us make a safe decision.
Please continue to pray for our family and the doctors involved. This is not an easy case for them and I'm sure they want to give us the best advice and do what is best for Justice.
Monday, August 15, 2011
Hardest Question of My Life
About a week before Justice had her open heart surgery we were on our way home from taking my son to school and she asked me "Mom, what happens if they stop my heart and can't get it to start again?"
I think at that moment my life stood still. She wanted an answer and I had to give her one but what would I say? I had no time to even think. I couldn't scare her but it had to be honest or she would know. So holding back tears I choked out that her heart was a muscle and they were going to make it hold still while they fixed it. Kind of like holding your arm or leg still for stitches or lab. Then, when they're done, they'll let it go to move on it's own again.
Little did I know how close we would come to it not starting again. Raising a child with high medical needs is so full of amazing moments.
I think at that moment my life stood still. She wanted an answer and I had to give her one but what would I say? I had no time to even think. I couldn't scare her but it had to be honest or she would know. So holding back tears I choked out that her heart was a muscle and they were going to make it hold still while they fixed it. Kind of like holding your arm or leg still for stitches or lab. Then, when they're done, they'll let it go to move on it's own again.
Little did I know how close we would come to it not starting again. Raising a child with high medical needs is so full of amazing moments.
Wednesday, August 10, 2011
Long Ride, Happy Life
You wouldn’t think writing a blog could be so hard to do. I guess it’s the subject that makes it so hard to start typing.
Well last February, Justice had open heart surgery. The original plan was to repair her pulmonary valve. However, they ended up finding a large amount of scar tissue under her valve and an Atrial Septal Defect (ASD). They repaired both of these problems and were able to leave her pulmonary valve intact for now.
After about a week in the hospital she went home off of oxygen and everything was looking very good. Then one evening, about 5 days later, she started to complain of pain in her shoulder and back. She was playing a board game so we didn’t think much about it at the time. At about 3 a.m. she woke up my husband and again was saying her shoulder and back was hurting and he noticed at that time she was starting to have trouble breathing. He thought about taking her to the ER but she went back to sleep so we decided to wait until morning and see how she felt.
By 7 a.m. she clearly needed medical attention. I called the doctor and asked if we should take her to the ER here in our town or take her to her normal hospital about an hour drive away. He recommended we go to the ER here. After about 6 hours in the ER they transferred her to her normal hospital where she would have access to her whole team of doctors.
It was discovered Justice had developed fluid on her heart. She was put on a large dose of many meds and was put on a schedule to have Echo’s done daily. After about a week however, the fluid was not better and had actually spread to her lung. She was then taken back into surgery where they drained the fluid off both her heart and lung.
This I have to say was an emotional nightmare! I overheard staff talking about how amazing it was that it took over 10 tries to restart Justice’s heart after they took her off bypass. When I asked her Cardiothoracic Surgeon about what is “normal” he said it can happen that a person needs help getting their heart to restart but most of the time it doesn’t need help at all. And yes, Justice did need a lot of extra attention but it shouldn’t affect anything from this point on. This was a comfort to hear but I wish I never would have heard the details to begin with.
As for the second round of surgeries, we kind of got a Cardiologist that was very excited about getting to go into the OR. He didn’t seem to understand that this was my child and not just a patient of mine. At one point, (and the first time ever) I almost passed out! The way he described inserting a needle into my baby’s already sewn up chest and needing to be very careful to poke it into the sack of fluid but not jab it into her actual heart or let the her heart beat back against the needle made all the blood run out of my head. Luckily for me, some of our other Cardiologists, who have worked with me for years, were there and provided me support. Plus, our Cardiothoracic Surgeon also could tell that when I said “I need to sit down.” that didn’t mean “I’m just tired of standing here.” When the Cardiologist went to get a consent to treat form, the CT Surgeon gave me some wonderful words of comfort and assured me that Justice was safe and would be under his watch at all times. Nothing will go wrong but if for some reason it did, he would know how to fix it and WILL step in.
She ended up fine. It’s been a long recovery and we still have things to watch and take care of but she’s getting there.
She ended up bonding pretty tightly with her CT surgeon and even convinced him not to clear her for any other surgeries until the summer was over.
We are now planning to have the spinal rods surgery (that was supposed to happen 2 years ago) this fall. Plus, at some point in her future she will need to have her pulmonary valve replaced. Because of this, she will probably need multiple heart surgeries throughout her life but for now, we are taking every day with her as a gift. We are so blessed to have such a strong, loving person in our world and so many people that work so hard to give her such a high quality of life.
We are doing more things to make memories, like this summer we went on vacation to the Smokey Mountains and stopped by Kenny Chesney’s home town because she has been such a huge fan of his her whole life.
Isn’t that what we should be doing? We have enough stress. Taking very chance we get to celebrate the momentous (like her heart started again) or the smaller joys (like one of her favorite entertainers) in life.
Tuesday, February 22, 2011
Current Justice: 2/22/11 Open Heart Surgery
Sorry it's been so long since I've written anything. Over the past few months Justice has been undergoing tests for scarring in her lungs. In the process of these test it was discovered her heart has become very unstable. In the morning she will be having open heart surgery to repair/replace her pulmonary valve and have some reconstructive work done in her right ventricle. Needless to say, this has been requiring a lot of our attention but as soon as I can I will try and write more.
Please feel free to leave comments, Justice loves to hear from people. It gives her strength and joy.
Thank you for your support.
Christy
Please feel free to leave comments, Justice loves to hear from people. It gives her strength and joy.
Thank you for your support.
Tuesday, December 7, 2010
Justice Logic on Brain Surgery & Learning
"I think my neurosurgeon removed my school nerve because learning is much easier when you don't have brain surgery."
I told her we might just need to talk to that doctor about that school nerve and see what he has to say.
I told her we might just need to talk to that doctor about that school nerve and see what he has to say.
Monday, December 6, 2010
Balance and Perspective
Many lifetimes ago I was an art major in college. For years now, I have thought of thousands of other majors that would have helped me more in my present day career as a mother coordinating the very complicated medical needs of my daughter and my son’s ADHD. Nonetheless, art was the path I saw myself taking at 18 yrs. old, a path that seemed to quickly come to a dead end.
During my brief time as an “Artist”, if you could even call me that at that stage, I did however, study balance and perspective…a LOT! Now as I watch my children struggle through their daily lives, I’m finding myself searching like a Renaissance artist for the perfect balance and perspective. Though I may no longer be looking with my pencil or oil paints, I have a much harder and deeper search. This search is not about becoming famous or gaining riches of money and fancy things, it’s about providing a stable home and loving environment for my children, keeping a marriage together under tremendous stress, pressure and grief, and not losing myself or my faith in the process.
How is it possible to do all these things? How can parents survive in this atmosphere? How does a marriage survive? The truth is sometimes they can’t. I know so many families that this beast of a life has torn apart. I can’t say it was their fault. It sure is not my place to judge them or even for a second say they didn’t try hard enough. In our society, we see people every day that do not have the strength to say no to a donut. These same people tell us their opinions about decisions we should and shouldn’t do with our children with special needs as if we (parents of children with special needs) should have all the will power in the world. Well, we don’t. We are just human beings trying to survive. I think one difference may be is we have no choice but to look harder for things that will bring balance and perspective to our lives and the horrors we see so regularly.
With Greatness comes Great Responsibility. This is so true but I also believe a lot of times with Great Responsibility comes Greatness. When I read about the victim of the Holocaust, I can’t help but see Greatness. These people certainly didn’t ask for the suffering and responsibilities that were forced upon them in the concentration camps but since then they have been a shining example of greatness raising wonderful children, grandchildren and showing the world examples of love and forgiveness.
I have to remind myself that I am so blessed. It is so easy to get frustrated and think we deserve better. When I look at girls Justice’s age at the mall, I want her to be healthy, popular and independent like them. I start to think how unfair it is that she is now on oxygen, getting a wheelchair, has had 31 surgeries and has to see a doctor at least once a week. But then I remember, Justice was born in one of the richest countries in the world and because of that she is still alive. I still get to tuck her into bed at night. When Justice needs a surgery, yes we have to go to many many appointments to make sure she can undertake the procedure but Justice gets to have the surgeries she needs. So many children in this world need surgeries they do not have access to, let alone state of the art equipment, world class doctors, a clean hospital, proper meds and toys, games, kid food, etc…just to make her recovery the best it can be.
Yes, I fear for her life at times. I fear her body will give out but I am blessed that I’ve never feared bombs, militias, my country or really even any country. I feel very safe. This allows me to concentrate on providing that balance and perspective for my family.
I’m not saying balance and perspective are easy, my dog alone can make me lose them but they are still very necessary. So this morning as Justice is vomiting, on a Pedialite 24 drip on her feeding pump, crying and screaming for mommy to get the pressure out of her tummy and make it start working again, I will keep reminding myself that it could be worse. We’re still here safe and sound and if things get too far out of control I have a wonderful hospital a phone call away. I’m going to take a deep breath, make sure she keeps her oxygen on, drink some more coffee and say a prayer to Our Lady asking her to ask her Son to give me more balance and perspective.
During my brief time as an “Artist”, if you could even call me that at that stage, I did however, study balance and perspective…a LOT! Now as I watch my children struggle through their daily lives, I’m finding myself searching like a Renaissance artist for the perfect balance and perspective. Though I may no longer be looking with my pencil or oil paints, I have a much harder and deeper search. This search is not about becoming famous or gaining riches of money and fancy things, it’s about providing a stable home and loving environment for my children, keeping a marriage together under tremendous stress, pressure and grief, and not losing myself or my faith in the process.
How is it possible to do all these things? How can parents survive in this atmosphere? How does a marriage survive? The truth is sometimes they can’t. I know so many families that this beast of a life has torn apart. I can’t say it was their fault. It sure is not my place to judge them or even for a second say they didn’t try hard enough. In our society, we see people every day that do not have the strength to say no to a donut. These same people tell us their opinions about decisions we should and shouldn’t do with our children with special needs as if we (parents of children with special needs) should have all the will power in the world. Well, we don’t. We are just human beings trying to survive. I think one difference may be is we have no choice but to look harder for things that will bring balance and perspective to our lives and the horrors we see so regularly.
With Greatness comes Great Responsibility. This is so true but I also believe a lot of times with Great Responsibility comes Greatness. When I read about the victim of the Holocaust, I can’t help but see Greatness. These people certainly didn’t ask for the suffering and responsibilities that were forced upon them in the concentration camps but since then they have been a shining example of greatness raising wonderful children, grandchildren and showing the world examples of love and forgiveness.
I have to remind myself that I am so blessed. It is so easy to get frustrated and think we deserve better. When I look at girls Justice’s age at the mall, I want her to be healthy, popular and independent like them. I start to think how unfair it is that she is now on oxygen, getting a wheelchair, has had 31 surgeries and has to see a doctor at least once a week. But then I remember, Justice was born in one of the richest countries in the world and because of that she is still alive. I still get to tuck her into bed at night. When Justice needs a surgery, yes we have to go to many many appointments to make sure she can undertake the procedure but Justice gets to have the surgeries she needs. So many children in this world need surgeries they do not have access to, let alone state of the art equipment, world class doctors, a clean hospital, proper meds and toys, games, kid food, etc…just to make her recovery the best it can be.
Yes, I fear for her life at times. I fear her body will give out but I am blessed that I’ve never feared bombs, militias, my country or really even any country. I feel very safe. This allows me to concentrate on providing that balance and perspective for my family.
I’m not saying balance and perspective are easy, my dog alone can make me lose them but they are still very necessary. So this morning as Justice is vomiting, on a Pedialite 24 drip on her feeding pump, crying and screaming for mommy to get the pressure out of her tummy and make it start working again, I will keep reminding myself that it could be worse. We’re still here safe and sound and if things get too far out of control I have a wonderful hospital a phone call away. I’m going to take a deep breath, make sure she keeps her oxygen on, drink some more coffee and say a prayer to Our Lady asking her to ask her Son to give me more balance and perspective.
Subscribe to:
Posts (Atom)