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.
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
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