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I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

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 Fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand. Isaiah 41:10


The past few days have not been good for little Carter.  Two days ago they made some changes to his medications and he had a great day.  He started to get agitated around 6 in the afternoon.  I walked to the door to get our nurses attention before I walked back to Carter’s bedside he was completely red and shaking uncontrollably.  It was scary to say the least.  The nurse came in and took one look at him and yelled out in hall for the PICU Doctor to come look, and by this point Carter was vomiting large amounts of bright green bile.  He would not open his eyes, which were also jittery.  He wanted to hold onto my hand and started shaking worse if I started to let go, so I knew he did know what was going on.  They gave him two large doses of Fentanyl to help him calm down.  It took a while, but the second dose did help.  His blood sugar was checked immediately, and it was normal.   They did lab work to rule out the possibility that he was becoming septic again. Besides elevated liver enzymes everything was normal.  His liver enzymes are elevated because of all of the sedation and pain medication he is receiving.  The fact that Carter was vomiting and he recently received a medication that had a risk of bowel perforation an abdominal x-ray was ordered.  Thankfully, Carter did not have a perforation in his bowel.  However, his intestines were completely backed up with stool.  We flushed his intestines and got a lot of stool out.  We have increased the amount of medication and times we flush his bowels, and they seem to be doing much better.   The only conclusion everyone can come up with is that Carter may have been having bowel spasms that can cause severe pain.  We are all keeping in mind that he is on the maximum dose he can have of Dexmedetomidine and we do not know all of the side effects.  He is still in the PICU where he will remain for a while and will continue to be monitored closely. 

Yesterday, Carter woke up ready to go.  He is receiving a TON of sedation and pain medications, so he should be drowsy when he wakes up. Not our child. Not at all. He was not drowsy and wanted to get up.  He has laid flat on his back for over 5 weeks now, so it is completely understandable.  We had to change some of his medications and increase some of them.  They seemed to help and Carter slept from 7 last night until 5 this morning.  When he woke up at 5 it was the same thing, he wanted up and was determined to get up.  He received more medication and 4 hours later started to calm down.  Carter closed his eyes to go to sleep and woke up just a few minutes later vomiting.  The vomiting continued for most of the morning.  He has a g-tube (feeding tube into his stomach) that we have had hooked to suction to pull everything off of his stomach, but it did not seem to be effective.  They placed a NG (Nasal-Gastric) tube around lunch, and it immediately pulled a lot of bile out of his stomach.  Carter has been awake all day today.  He can not get comfortable enough to go to sleep.  We just spoke with the PICU Doctor again and they are trying to determine what to do next. 

We are SO ready for all of this to be over with.  Watching the pain and agitation Carter is going through is awful.  Not being able to hold him and having no way to soothe him is even harder.  We feel so helpless when he is agitated or just plain mad that he cannot get up.  Every time he wakes up we have to ask for more pain or sedation medication to make him go to sleep.  Medicating him has been his only comfort for the past 5 weeks.  We are praying for wisdom for the Doctors to come up with a good solution, and we pray for Carter to stay still. Today is just another day closer to being able to hold him in my arms!  As always… To Him be the Glory!

Carter's sweet little wrapped legs and feet.





12 comments:

  1. So sorry that Cater is having to go through all of this. It has to be very hard on you and Brandon, not being able to hold your precious baby boy and comfort him. We're praying especially for comfort for Carter and all of you and for the doctor's wisdom in treatment.

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  2. I'm praying that the doctors find a medicine that will help and that Carter can tolerate so he can rest and heal.

    Is there a way to provide some calming music or white noise (ocean or gentle rain)? That might help him get some rest without so much medicine. I know that you have to be concerned about what all of it is doing to his little body.

    I know that God is our Father and will not forsake us. May He continue be with all of you, giving you comfort and strength, and most of all healing and relief from pain for Carter.

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  3. You and your family are an inspiration. I will continue to pray for strength, healing, and peace.

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  4. I'm praying for Carter tonight--that he will get a good night's
    sleep. Praying that he will heal soon. Praying for your endurance.

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  5. Asking for God to give the doctors and nurses the knowledge on how to improve Carter's condition and praying that God will soothe Carter to give him peace, comfort, sleep, and ability to stay still. Please Lord take this little boys vomiting away and fix what is going on with his bowels. Lord this family is so faithful in the love and amazement of you and they need you more than ever. It has been 5 weeks since this journey started and they are exhausted, weak, and only want their son to healed. Thank you for all that you have done so far for this precious little boy. Ask all of this in your Holy and precious name, Jesus Christ Amen!

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  6. My heart and prayers go out to all of you!!

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  7. Praying daily for Carter to heal and feel no pain. You continue to inspire me with your faith. you are an inspiration to all who follow your story. i pray for you and your husband to keep enduring the many obstacles you face. God is good. The Almighty will prevail. God bless you. praying in Florence!

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  8. My heart is so full of love for this sweet baby. I don't understand these things but God does. Praying for you all to stay strong in the faith and that Carter will be healed quickly and completely. I share Carter's story and others are praying for him as well. Lola Duncan

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  9. I just laid down to read and go to sleep. I read this on facebook and got an overwhelming emotion all through me. I do not know anything about the disease you stated above or what it is even. I do know you sound like a wonderful loving mother. May god be with you, your family and especially Carter.

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  10. Praying for Carter and for both of you as you make this journey.

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