... so maybe I didn't want to hear the doctor's view on things. This is a new doctor that relieved Rhys' primary/head neonatal team doctor and I'm not sure what to think about him. Maybe this is Dr. Gloom. He didn't tell us anything we didn't already know, but somehow we left the conversation feeling completely defeated. If I hear one more time that my child is fighting against the odds or that he is going to potentially be deaf, blind and/or developmentally challenged I am going to scream. I almost feel like they are trying to convince us to give up. I am counting down the days until the old doctor returns and Rhys gets one of his primary nurses back. I am convinced he can tell a difference, he always does better when his cheerleaders are around.
Rhys' status was the same story when we left this afternoon. The oscillator settings just keep going up, but he is no longer on the paralytic. He is moving a lot, his stats are good, but his blood gases aren't reflecting this. He hasn't had anything to remove the fluid on his lungs for the last day or two, so they gave him a dose when we left to see if that would help oxygenate him. The doctor mentioned possibly putting him back on the paralytic if his 10 pm gas didn't come back better. So, good day yesterday, not so good today. It is getting hard to deal with all the different approaches each doctor has. Since there isn't a textbook answer to any of this they all have a different method and it is frustrating when one doctor's decisions seem to gain progress and then another doctor takes over and stirs things up. I am praying for a little peace of mind tonight and restful sleep. I am exhausted and Cody goes back to work (again) tomorrow.
14 comments:
Remember:
The darker it gets, the easier it is to see the light.
We are all here for you and your little man. Keep fighting.
Stay Strong
Shea♥
Candice & Cody,
Well, I must say that he(Rhys) has quite a few cheerleaders on this side of things and so do you, my friend! We will not stop praying or cheering for the little guy. We love you and we love Rhys very much! You are strong. If you need to scream... you can call me! I will listen any time you need me. I pray for "Godspeed" for your primary nurses and doctor to return.
You are a family of strong faith.
Jason found a couple of verses for you,
2 Timothy 1:7 "(KJV) For God hath not given us the spirit of fear but of power, love, and a sound mind."
Duet 31:6 (KJV)
"Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, He it is that doeth go with the; He will not fail the, nor forsake the."
Love,
The Grisel Family
Don't let yourself get too discouraged by the doctors, nothing is certain! Your son could just as well be completely normal with no signs of his brain bleed (happened to my daugter after a grade 3 bleed). They just don't know. Stay positive and keep up the great work for your son
Nikki
Found your blog and I'm praying that little Rhys will be fully healed. A favorite verse of mine:
"This is my command—be strong and courageous! Do not be afraid or discouraged. FOR THE LORD YOUR GOD WILL BE WITH YOU WHEREVER YOU GO.” Joshua 1:9
Candice and Cody -
There's a song called Voice of Truth. It's on Coy's website at the bottom.
The Voice of Truth tells me a different story
The Voice of Truth says "Do not be afraid"
And the Voice of Truth says "This is for my glory."
Out of all the voices calling out to me,
I will chose to listen and believe the Voice of Truth.
Keep your head high and concentrate on your instinct and what God is telling you, nobody else.
Amy
Candice & Cody,
We have very dear friends who also had a 1 lb preemie. That girl is now 13 and plays softball, basketbal, volleyball and was just here yesterday swimming and being silly like 13 years olds do. Her parents were also told the same thing. Try your best to filter what is said and take peace in the fact that we serve an amazing and awesome God that has the power to do ANYTHING!
Hang in there,
Jeff & Laura Seasor
Candice and Cody,
Hang in there. My twin daughters were also micro preemies (born 27 weeks). They are now 9 going on 15. they were born at 27 weeks and were in the hospital for 86 days, through Halloween, Thanksgiving and Christmas. They came home 2 days before New Years.
My prayers are with you all. You will have good days and setbacks. If you ever need anyone to talk to feel free to call me anytime (631) 243-4889.
Carmela Paulich (wamu)
Hi guys,
I know EXACTLY what you mean about the different doctors with different approaches. It does get VERY frustrating and confusing. I know all the doctors you are dealing with and they all have very different personalities. It was probablly 2 months into it before we heard anything "positive" about Coy's prognosis. John & Kelly Sherrill (Kyle's parents) know exactly what you are going through as well.
Please stay strong and know that God has the final say so, not the doctors. They are all great doctors, but not all have great bedside manner. And, ask all the questions you need if you don't understand or agree with something.
Stay strong guys. You are doing an amazing job. Rhys is a lucky guy to have two awesome parents that are always by his side. It does make a HUGE difference.
Please email me if you need anything at all. We will be at Hermann tomorrow for an eye appointment; if you need to talk or vent, we can come over.
Ann Marie Kolkhorst
nursekolkhorst@yahoo.com
Hang in there. We struggled with the same type of issues. One doctor was hopeful the next was giving us the worst of the worst. Remember that God is The Great Doctor. Great things can (and do) happen even in the midst of the storm. We're cheering for little Rhys. Of course we're praying too!
Julie
Candice and Cody- KEEP PRAYING!
Baby Rhys- KEEP FIGHTING!
I guess different doctors just have different approaches. The two are you are definitely getting my vote for "Parents of the Year". Yall are so strong and grounded in your faith. We love yall and are still praying/thinking about you.
I hate that you are getting discouraged, but I know that it must he easy to get discouraged being in your shoes. Just keep your faith. Remember that God is the almighty physician and He is in control. Give Rhys to Him and everything will fall into place. You have to believe that He will take care of that precious baby. We love you all very much and will not stop praying for our little fighter!
Kelli
"Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand." Isaiah 41:10
Hi Candice & Cody,
I have been praying for you and your family, and baby Rhys as well as getting updates from Angie.
If I may encourage you I have some words and scriptures to suggest to empower you and perhaps you may want to post them next to Rhys so that the nurses and doctors understand your wishes and beliefs.
Prov 18:21 says "Death and life are in the power of the tongue." There is power in words. I would encourage you to explain to the dr's that they many only speak life into your child and words of hope and encouragement. Let them understand that you respect them as professional, but you will be looking to the bible and God for strength.
I can't imagine what it must be like for you both daily, but just know that there are many who continue to read this daily in faith that we will be a small part of the miracle of prayer and to see him come through this struggle. We only look forward not back.
Remember:
Proverbs 3:5 "Lean not on your own understanding." We must trust God for our decisions.
II Timothy 1:7 says, "God has not given you a spirit of fear, but of love and power and a sound mind."
Finally Mark 11:24 " Whatsoever things you desire, when you pray, believe that ye receive them, and ye shall have."
In his love,
Kari Jo
The only cheerleader Rhys needs is the one that will never leave him, and He is certainly hearing us and answering our prayers, so don't worry about how the doctors act. The nurses that he has more often he may recognize their voices somewhat, so that might actually help him. And one day, Rhys can walk in that hospital and show that doctor with the obviously poor bedside manner (the man must not be a father) just who he has become. Of course you won't give up, and neither will we. You are all always in our prayers! In Christian love,
Erin
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