Elizabeth is Still in the Hospital

She is still in the hospital but we heard very good news this morning.  She had her first negative blood culture which means the IV antibiotics are working to kill the infection.  Also her echo was comparative to her last one that was done just a few months ago.  So glory to God no damage has been done to her heart muscles or valves that they can see. 

She has to have five consecutive negative blood cultures, five days apart, before they can stop the antibiotics.   The infectious disease doctor said it is a very aggressive strain of bacteria and we need to be sure it is all gone before we stop the IV antibiotics.  We were hoping that she would be discharged today and that they would just leave her IV port in and we could run her over to the hospital daily so she could get her IV antibiotic infusions.  But it is getting late and we have not heard anything.   Tim said the infectious disease doctor has not cleared that plan of action yet.  He also said that the nurse said there is another blood test ordered for tomorrow so I guess they will not be home today.

The rest of us are still very sick with this flu.  I am trying to stay on top of all the children’s care (breathing treatments and Advil) but my body does not want to move very much.  Praise God William is recovering ahead of everyone so he has been very helpful.  It is a respiratory flu.  High fevers, chills and sweats, achy everywhere, exhausted and coughing a lot kind of flu.   I have the children all camped out in the living room watching movies as they rest and sleep.   Tim has been with Elizabeth the whole time tending to her and he is very sick with this flu as well.  Bless his heart.

I will update as I hear anything new.

I pray you all have a very Merry Christmas!

Luke 2:8-20  And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.  And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.  And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.  For unto you is born this day in the city of David a Saviour, which is Christ the Lord.  And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.  And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,  Glory to God in the highest, and on earth peace, good will toward men.  And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.  And they came with haste, and found Mary, and Joseph, and the babe lying in a manger. And when they had seen it, they made known abroad the saying which was told them concerning this child. And all they that heard it wondered at those things which were told them by the shepherds.  But Mary kept all these things, and pondered them in her heart. And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.

Medically Fragile Children

God has been so very good to us.  When God brought each of our children to us some had special needs like Fetal Alcohol Syndrome, feeding issues or were a preemie and needed extra care.  But some were not only special needs but were Medically Fragile as well.  My two children that are still considered medically fragile children are Antonio and Elizabeth.  God has been gracious.   When those two first came to live with us it was touch and go for a while.  We had frequent hospital stays and emergency crisis.  We had to stay on our toes in breathing treatments, medication and pay close attention to every detail as one missed thing could mean a stay down town at our local children’s hospital.  A common cold would go thru the house and everyone would do fine but it would put Elizabeth and Antonio into the hospital for days, sometimes turning into a life threatening infection or pneumonia.  They both have lung disease…breath shallowly and do not have a productive cough. 

As the children have grown God has helped Elizabeth and Antonio to become strong and healthy.  We have much fewer hospital stays and middle of the night emergencies.  Praise be to God, as I am getting older and those long hospital stays were rough.  Tim driving down to Atlanta, that is an hour away, to spend nights with a child and me caring for the other children and farm.  Then during the day he would drive all the way back to our town to work and I would pack up our crew and home schooling material and drive to spend the day with which ever child was admitted.  A few times we had a child in the hospital for a few months straight and a few times we had more than one child hospitalized and Tim and I just had to do the best we could do to get thru it all. 

Now days I hardly remember Elizabeth or Antonio are medically Fragile.  They seem so very strong and healthy to me.  Unless I am at a cardiologist appointment for Elizabeth viewing her recent echo-cardiogram or Antonio’s most recent x-rays of his spine… than I remember how God is sustaining them and that it is truly a miracle they both are even here.

The girls had a friend come and spend the night for the weekend last weekend.  They had such a good time.  Sunday Elizabeth woke up with a very high fever and no appetite.  So I did what I do in that situation.  QUARANTINE!  You laugh…But really.  You do the math.  7 people in the home.  Yup 7.  And then how long it takes for any virus to make its way through all of us.  That equals weeks of nursing sick children and a hubby at times, extra cleaning and disinfecting in the home and sometimes in the worst case scenario…tons of extra laundry and a hospital stay for a child or two.  Whew…so I stand by it.  I quarantine just to be on the safe side.   We also took the little friend that was visiting home just in case this was something contagious.

Above is normal heart rate and O2 level for Elizabeth while sleeping.

I took care of Elizabeth all day Sunday keeping a close eye on her lungs and oxygen levels.  She normally runs about 94 percent when up and around during the day and 96 or 97 when sleeping.  Her heart beats about 85 beats per minute.  That is her base line for when she is healthy.    All day Sunday her temp was about 101-102 but I could bring it down just under 100 with Advil.    It was in the night she began to have major trouble.  I could not get her temp down no matter what.  It stayed up over 102 all night.  Her oxygen levels all night were 92.  She was breathing very fast and I could not get her temp or heart rate down.  It was about 160 beats per minute all night.  A very  high heart rate always bothers me as her heart is patched together.  Tim and I both spent time up with her in the night.  Bless her heart she was miserable.  I had her taking frequent showers to try to keep her temp down.  She felt so hot to the touch but had hard chills. By Monday morning I knew we needed to get to see her doctor. 

With any of my other children I would wait it out.  But Antonio and Elizabeth I always get right in, especially if I am not sure if it is viral or an infection.  Since no one else in the house was sick at all I was thinking this was an infection.  She had no cough or congestion and her lungs sounded good to me but I took her in anyways just to be sure.

I only let our main pediatrician work with Elizabeth and Antonio.  He is very hard to get in to see but I was able to get an appointment with him first thing.  He has four offices and he was at the one not in our town but I drove Elizabeth out there anyways.   I was just so glad to see him in person.  As he knows her well and we work well together.   I gave Elizabeth Advil at 6:00 that morning and she was still burning up at his office at 9:40.  So they gave her Tylenol on top of it all.  They did a flu test and strep throat test both were negative.  He did not have a CBC machine there or an X-ray at this office so we went back to our town to his main office to have those two things done.  He also drew blood for a culture that would take a few days to hear back the results from.  The CBC showed elevated white blood cell count and the X-ray was clear.  Because of the CBC we went ahead and did a Rocephin(sp?) shot.  OUCH.  That one is painful but helps so much.  It is thick and takes a while to put in and they cut it with Lidacane to help with the sting of it all.  Bless her heart.  By that time we were stripping off her clothing as she was sweating profusely.   The doctor also prescribed an oral antibiotic to take thru the week till we got the blood culture back. 

She had fevers off and on all week and when I had her at the doctors on Monday she picked up the flu.  Yup.  So all of us now have the flu.  The achey, coughing, high fever type flu.

I also took her back in for another Rocefin shot Friday as I didn’t want to go into the weekend with her being so sick and us having so few answers as to why.

Sunday I got a call from the doctor asking if she had her teeth cleaned recently or braces worked on.  She did have her braces worked on just Thursday before all this started.   Anyone who has a heart condition needs to take an antibiotic before any teeth cleaning or invasive work as there are bacteria in the mouth that once they get into the blood stream target the heart valves and it is bad news.  Yup.  She tested positive for that.  So we had to take her to our local hospital for massive IV antibiotics right away.   She was admitted Sunday.   

Poor Tim with the flu is staying with her right now.  Bless his heart.

We all have the flu so this has been very hard on everyone.  I can not take anything for headaches, body aches or flu because of my allergies to fillers in meds.  God has been gracious and I can push myself praise God. 

Thank you P family for the meal this afternoon.  It was greatly appreciated! 

We are waiting on the results of a new blood culture to see if the antibiotics are working.  We are also waiting to see if they could get a good look at the valves to see if infection has set in, in them.   It is very hard to get a good ultrasound picture of her valves because of all her scar tissue.  So if her heart doctor is not happy with the echo she had done here, they will take her by ambulance down to Egleston to the Sibly Heart Center for an esophageal echo.  Yes, done from in her esophagus. 

We are praying that the culture will come back with less than before, showing what we have been doing is working and that there is no damage to her heart or valves.  They did see one suspicious area on one of her valves. 

I am praying that I can either do her IV antibiotics at home.  I have done them before.  Or that I can bring her to our local hospital daily to have them given. 

Please keep Elizabeth in your prayers.  For protection and healing of her heart and for all of us with the flu to quickly get over it and be able to function again. 

Psalm 34:1  I will bless the Lord at all times: his praise shall continually be in my mouth.

 

Blessings,

susan

Happy 19th Birthday Antonio!!

Antonio being in our family was a God thing from the very beginning.  I stumbled upon his picture while doing research on the internet about children with special needs.  I was grieving the death of Tim’s and my daughter, Faith Anne.  I could not stop looking at his sweet face.   I kept pulling it up again and again on my computer and finely just printed it off for me to keep close.  Every time I looked at his picture I felt an exhale in my soul from the tension of sadness we had lived thru day and night for months.  I showed his picture to Tim and Tim said to ask for his file. 

God had been so good to us.  He was there totally as we walked thru the hard days after Faith Anne’s passing.  I never felt alone.  I cried out why...  I went through so many overwhelming emotions and questions flooded my mind till I felt physically sick.  But… When I felt as if I could not breathe.  God breathed for me.  When I would wake up from sleep, and remember, and it would all rush over me again fresh.  He held me.  He reminded me to get up every day and be there for the ones that still needed me to at least act like I was ok.  God is real and I can never explain how much He was ever present and always has been there thru our life.  But especially, though our journey of adoption of children with special needs.  He has never left us and is with us always to this very day.   

I know…one can never replace a child, ever.  No one could ever replace our precious first daughter Faith Anne.  But when I saw Antonio’s picture it somehow started a healing process in my heart.  An acceptance of all that happened and we had gone through.  A time of taking small steps forward and not just going thru the motions of daily life.  The days of me just getting up and doing the necessities of life and then climbing back into bed every time I had a chance to escape in sleep, were becoming less frequent. 

We did receive his file and received the go-ahead to start visits.  I remember the first time I saw him in person.  Tim and I drove to Atlanta to DFCS for the first introduction.  He was so much smaller than I thought he would be, so frail and tiny.  I had never seen, in person, a child that was five years old and weighed just 24 pounds.  I was a little afraid to hold him.  He was very stiff from the Cerebral Palsy and just bones.  I didn’t want to hurt him.  But his foster mom just walked over and placed him in my lap.  As I held him he talked away.  He was just so precious from the very beginning.  I had long hair and he kept feeling it saying that my hair was the most beautiful hair he had ever seen.  Ok, that did it… I was putty in his hand.  Tim and I were smitten.  From that very first meeting…in our hearts, he was our son. 

We went thru all of the visits, learned his medical history and his care.  Also what to watch for if his shunt was failing,  how to keep a check on his lungs and know when to give breathing treatments.  It was not long and we were doing overnight visits and then he was home forever.  Several months later the adoption was finalized and he was officially a Nichols!

When we received all of his paper work and history, at the time of adoption, I read thru it with great fervor.  I wanted to know about the before.  About his past before he came to us.  I wanted to know every detail about the first five years of his little life.  As I read, I was shocked.  There was not one picture of the day he was born as a 23 week preemie.  Not one mention of all he went through or record of how he celebrated his birthdays.  The very earliest picture I have of him is his school picture taken just a few months before we first met him.  His whole life history packet…even though it was a complete record because he was in care from birth…was only full of technical medical records.  I was so sad over this.  How can a child live for five years and no one snap one picture or take record of even once special day?  I knew that for the rest of his life things were going to be done different.  That even though he was in care his whole life and no one had taken one picture to put in his file.  That even though no one had ever tried to adopt him,  that OUR  goal, was to see him happy and well cared for, for the rest of his life.  Adopted, our son, loved and cherished and appreciated forever.

We have been so blessed by God to have him for our son.  God knew what He was doing when he introduced me to his picture on an adoption website all those years ago.    

Yes, his medical care has been extensive.  Yes, his hospital stays have been many and at times lengthy.  Yes, he has had hours upon hours of therapy.  Yes, his daily care takes a lot of time.  But those things have NEVER been regretted or a burden to us in anyway.  If you could meet Antonio in person you would see.  He is always smiling.  He is always happy.  He is always loving.  He dishes out complements to everyone he meets.  He asks to hug everyone.  Anyone who meets Antonio, that takes the time to have a conversation with him, walks away a changed person and feeling totally blessed.  He loves the Lord with all his heart and is content in all areas of his life.  Even with the way his body is with his CP.  Even when he is hurting or in pain.  Even when he is facing another surgery.  Antonio loves the Lord and never asks why me.  He is a blessing and inspiration. 

As I gave him his shower this morning and chatted away with him.  I was in awe that he is 19 years old today.   As he made a joke that I was the first one to diaper him and dress him as a 19 year old…all I felt was gratefulness.  Grateful that God brought him to us.  Grateful that God brought him through every life threatening illness, infection and surgery.  Grateful and honored for all the prayers he prays for us all every day.  Grateful to be able to care for his needs. 

We all love Antonio so much.  We all spoil him a bit and try to give him whatever he wants.  Because his wants are so few and usually in them, is an angle to do for others as well. 

Oh, God in heaven thank you for Antonio!  Thank you for these 19 years he has lived!

And Antonio…I don’t think you will ever know how much you have meant to us and do mean to our family.  May you have the happiest of birthdays today!  Gods blessings be upon you now and every day for the rest of your life.

Isaiah 40:31  But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Love always and from the bottom of our hearts,

Dad, mom, Stephen, William, Carolyn, Zeke and Elizabeth