Monday, December 23, 2013

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.




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