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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.