I didn’t blog yesterday because
I had promised my hubby that we would play computer games together. We used to be big computer nerds when we were
first married but now there are often other things that get in the way of us
playing together. Anyways, it was really
nice to spend some time goofing off. Yesterday we went to see Jordan and were
told that they had stopped all the antibiotics and steroids. It was just him, the ventilator, and the
feeding tube. They were then going to do
observation to make sure he could continue to be stable without all the extra
support. We were very joyous about this
information because we like to hear good news. He was really sleepy on Saturday
when we visited. He didn’t want to open
his eyes very much at all. He seemed
very content to just snooze while we shared a hand cuddle! I just love him so
very much.
Today our update from
the doctor revealed not so good news.
Since they had stopped the antibiotics, his oxygen levels became very
unstable at around 3am. They ran some
blood tests and found that his inflammation response had gone up again. They then did an x-ray which showed white
patches in his lungs. This shows that
the infection is coming back or a new infection is starting. The
infection that he had last week has been diagnosed as ventilator associated pneumonia
(VAP). They could not say for sure if it was the
same bacteria as previously but they did take some cultures to find that
out. They started him on a new
antibiotic that is in the same line as the previous one they were using but is
different. They also had to change the
ventilation system because they could not control his breathing very well on
the high frequency ventilator. They
switched him to Synchronized Intermittent Mandatory Ventilation (SIMV).
Since the switch and the start of antibiotics, his oxygen is now stable.
The doctor did not say much
about this new ventilator system but I will ask plenty of questions. When I looked it up online I was reading that
the ventilator synchronizes to regular breathing pattern but allows Jordan to
breathe on his own while providing support if he doesn’t take a breath within
the breathing cycle. So it waits for him
to take a breath. If he does then it
gives him oxygen concentrated air for that breath. If he doesn’t, then it gives him a mechanical
breath. To me this seems like a good
thing because they can encourage him to breathe on his own. Like I said though, we did not talk to the doctor
about this new ventilator yet so I do not know if it is better or not. Obviously it is better right now because it
is causing stability. We were told
earlier though that ventilation that opens the lungs all the way with pressure
causes more ventilation damage to the lungs.
I guess I should not worry myself with all these details because God has
everything under control. I think more
than anything I just want to understand completely what is going on.
It really breaks my heart that
Jordan has to go through so much to survive.
More than anything I want him to be fully healthy and successful. I trust completely in God’s plans but the
long journey of highs and lows is sometimes hard to handle. Especially since I am only human. I will lean on God for my strength as I have
been doing the entire situation. I know
that He is holding me and will carry me through my own struggles. If I could trade places with Jordan I would
in a heartbeat! As I was giving Jason his goodnight kisses and hugs this
evening I just cradled him in my arms and the tears just would not stop. I praise God for my perfect little boys. I am so grateful for both Jason and
Jordan. I look forward to the moment
when I can cradle Jordan in my arms before he goes to bed. When he can be home and healthy. I know that God has big plans for his life
and I pray that my desires match God’s plans.
My biggest fear is that Jordan will come so far and then be taken. I know that I am supposed to fully surrender
Jordan to God and I do surrender him.
Whether Jordan is here for a short time or for a lifetime, he certainly
has changed my life forever. Is it wrong
to ask God to please not take my baby boy?
This is not an easy journey. God
doesn’t promise easy. He promises to
never leave us nor forsake us. This
promise is what we need to cling to. It
is more than okay to cry in Jesus’ arms.
He is our great healer and will provide comfort and navigation within the
storm.
Today in church our message was
about humbling ourselves before God. If
we have too much pride in our lives about our accomplishments, we cannot be
used by God according to his purposes.
We need to compare ourselves to scripture rather than comparing ourselves
to our neighbor. Often times, because we
are human, we find that we don’t measure up to God’s word and instead of trying
to change this we switch our focus to compare ourselves with someone we can
measure up to and be better than. Our
focus should always remain on God’s plan for our life and becoming more like
Jesus daily. This really spoke to
me. I know that God wants me to share
this journey but He deserves all the credit.
Maybe the cycle of good and bad news that comes with a long NICU stay is
because God wants to remind us to be in continual prayer and praise. We cannot just pray when things are bad and
then forget about God’s power when things are good. God wants to rejoice with us in the good
times and weep with us and strengthen us in the bad times. He wants to share ALL of our lives rather than
just part.
Lord I pray for sweet little
Jordan today. I pray that you would work
your miracles in his lungs. I pray that
you would clear the infection immediately again as you did last week. I pray that this infection would be
completely removed and not able to return.
I pray that the ventilator system would not inflict more damage to
Jordan’s lungs. I pray that you would
heal his lungs and allow him to be taken off of the ventilator on the scheduled
time. I praise you that the new
ventilator is allowing him to be stable.
Lord I praise you for the care that he is receiving. I ask that you would provide wisdom and
guidance for the doctors and nurses. I
thank you that he can have this quality of care with doctors that really care
about his success. I ask that you would
be with Jacob and I on this journey. Continue to hold us all in your arms. Give us strength and endurance. Help us to seek you when we are weary and to
praise you for the good days. Please
heal Jordan. I ask that my desires would
match your perfect plans. I ask that you
would allow Jordan’s life to be a big testimony of your power and that he would
completely outgrow every trial of his prematurity. Allow us to be a testimony to you as well. Use the words that I write to reach many and
to plant seeds. Help us to be
humble. Allow Jordan and us to rest well
tonight. I ask these things in your name, Amen.
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