Saturday, April 2, 2016

Elizabeth's Medical Updates

The weather here has been just lovely.  We took a two week break from home schooling.  The children have loved playing outside and helping me with little projects around the farm.  God has helped me get so much done outside.  It has been very relaxing and nice.
When we started back into this foster/adopt journey, life was very intense and hard at times.  The children God placed here were so needy, I had to let a lot of farm and house things go in order to insure bonding with the children and to best help them.  They are all doing so much better.  They are growing and maturing to the point, I can now have a few of my older children supervise them on the play ground, for short periods of time.  Enough time to work on gardens for short spells or do little projects close by.  It has been so nice.  God is so good.

Things have been going well here but when you have a house full of children that are medically fragile/special needs, there are things that are going to come up with their health often, we try to just trust God and take them in stride.  The newest health issues have been with Elizabeth.  She was born very fragile, with many serious life threatening health issues.  She has done very well, by the grace of God but there are things we have to monitor her whole life, like her air way,  her hearing loss and her heart.

She was born with a three chamber heart and will need open heart surgeries, every so many years her whole life, to replace the parts they put in to fix it.  These parts do not grow with her and break down over time.  When they constrict or get pin holes and tears in them, she needs open heart surgery fast, in order to fix the issue before it becomes life threatening.

Elizabeth also has scoliosis.  She is checked every six months to keep an eye on it.  Her last orthopaedic appointment in March, showed that she had gone through a growth spurt and needs to have her back rodded as soon as possible.  The doctor wanted to do the surgery this month.  Elizabeth cried.  She did not want to miss her ballet classes and June 4th recital.  The doctor looked at his schedule and has scheduled the surgery for June 22.  BUT...

Elizabeth has been having shortness of breath, low stamina, heart palpitations, blue hands and dizzy spells for the last three months.  They have become a daily thing.  I have a pulse-ox machine here at home and her oxygen levels have stayed good.   I took her to her heart doctor on Thursday and he did an EKG and it came back good.  She wore a heart harness for 24 hours to capture these episodes and see what exactly her heart is doing.  It came back good as well.  She had an ECHO cardiogram, which came back the same as six months ago.  No worse.  Her replaced conduit has moderate stenosis no different than last ECHO six months ago.   So... Her growth spurt may have made the stenosis more of an issue or things are pointing to that she may have outgrown her airway.  She was trached when she was four months old.  Her vocal cords are paralyzed in the closed position.  She needed a trach for many years.  She finally grew enough, until she had room in her airway to breathe around her vocal cords.  Her airway has a lot of scar tissue in it and gets tight as scar tissue builds up and does not grow and stretch over time.  It actually thickens, constricts and often gets granulated tissue bumps on it.  Those have to be lazered or burned away, to make more room in her airway so she can breath.  Sometimes she also needs her airway dilated to stretch that scar tissue area that has constricted.
She can not have her back surgery till we get to the bottom of what is causing these other symptoms.  One other thing it could be is that her scoliosis is actually putting pressure on her enlarged heart or lungs a bit.  Though all doctors involved thinks that is unlikely.  She had blood drawn for blood work to check all her organs.  So we pray and wait...

God is so good and I know that all things are in His mighty hands.  He loves Elizabeth more than anyone else ever could and has a plan for her and her life.

Isaiah 43:2  When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.

 

Blessings,

susan

6 comments:

  1. I look at your picture Elizabeth and think how you look so normal. Your body looks perfectly healthy! It makes me think how one can be going through so many troubles and we just don't see it on the outside so we should try to be kind to everybody. : ) Anyways, we are praying for you. I'm sorry you have all these troubles but I'm sure glad you have the Lord to be with you all of your days. : )

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  2. Meya had her spinal fusion in Aug 2014. She also has a severe case of spastic quadriplegic cerebral palsy. Anyways, we found out after her surgery how much her curve had impacted her left lung. It didn't show up in the xray and typically cp kids have a lower curve. Here's hoping you get everything figured out, so she can get her fusion behind her. I don't know if you do anything with facebook, but I found this amazing group and they were a wealth of information and also prayed us through Meya's surgery so here is the link. https://www.facebook.com/groups/scoliosisparentssupport/

    Dannette

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    1. Thank you for the encouragement and information Dannette! I really appreciate it. I will check out the facebook. My husband has it. Pray you and your family are doing well. Blessings!

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  3. We are praying sweet Elizabeth! It is 23 degrees here tonight- may get as low as 18!! We are freezing! LOL!! Our boys and Mercy also have matured enough that I too get more done! And then the Lord sent us "G" for a season this week! LOL!!
    God is good! ((((HUGS)))))

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    1. Thank you! My that is cold for this time of year! We are supposed to get frost tonight but most days have been high sixties lately. I have gotten a lot of gardening done by the grace of God. The beds are all prepared and ready for planting. Will be praying for G and you all. Love and blessings from me here in the North Georgia mountains.

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