Tuesday, April 17, 2012

Day 6 Post Op

Tuesday morning. Day 6. And everything changes again. First, C was moved back to the cardiac icu side of the unit. Almost comical, but not really. We again have one of our very favorite nurses from previous stays and shecis all on top of C's care. Such a blessing. Great nurses really make a huge difference. Our nurse yesterday was awesome as well, just new to us as she started at the hospital a year ago. We certainly have our favorites around here...and some we don't like as much.

Anyway, the move went smoothly. C was out it the whole time. She had another dose of choral hydrate and was still pretty slow to come to. Well, Kevin was doing her food and juice this morning and she vomited both. We are used to her vomiting but twice in a row is unusual. I get to the hospital, walk in on this, and I am then informed that C is actually having seizures. Seriously.

I absolutely felt like the floor opened up under me. I don't think I was seeing anything at first. The cardiologist on this week, who I really like, came in and told us what he was thinking. I just started crying. How is it that my baby girl just cannot get a damn break. The cardiologist felt so bad for me he just kept patting my shoulder and telling me he was having the best neurologist come in to look at C. He even said that his own daughter sees this particular neurologist.

The neurologist came in and spoke with us. He did a physical exam and breifly talked to us about what he would do. We then took C to CT scan to see if she had any btrain injury or a bleed. I guess they can also tell from that whether she had a stroke or not. The good news of the day is that she does not have a brain bleed or major brain injury. She is now hooked to an eeg machine that will monitor her for the next 24 hours. Fortunately they did not have to shave her head to put the electrodes on. Once it was determined that she has no big brain trauma there was a collective sigh of relief. However, she is still having seizures and we need to figure out why.

There have been several ideas floated but I do not want to latch on to any one idea until we hear from neurology again. One of the most comomon is that kids will do this after being on cardio bypass. Another thought is that she is so traumatized and anxious from being in the icu. However, again I do not want to start thinking a certain way until we have more information.

Cardiac wise C is still improving. EP cardio was by again and again he turned her pacer down. She is being paced at a rate of 100 now. He originally had her down to 90 but as soon as he walked out the door, she dropped her oxygen saturations so the pace went to 90. Again, the arrhythmia is still there but much, much slower. He actually cut down on one of the medications to see how she will do. There is hope that the meds are working.

Regular cardiology is good with her as well. He thinks she is headed in the right direction and she did not even have an echo today.

Her left lung is even clearer than yesterday. She still has two of her lung chest tubes as they are still draining. Her excess fluid is beginning to come off and she is lookin less puffy. Hope this will help stabilize her numbers even more...oxygen saturations and blood pressure.

Today is nitric weaning day. She is finally coming off some of the oxygen assistence. Nitric is weaned first and then will see about oxygen. She has been doing decent most of the day but does desat here and there. Looks like could also be part of the seizures.

Surgeon came by again just to check and he is good with her as long as her sats stay in the 80's. So no cath in the immediate future.

Now we sit here and wait. As usual. With more stress than we should. I just want to hold C again. Snuggle with her but that is not being allowed right now. She has not been stable long enough for a good run, she continues to need lots of intervention and she still has her arterial line, along with two chest tubes.

It is always funny to me how all three cardio people we saw today did not think much of the seizures. After they learned from the CT scan that there is no bleed, there were all like, meh....its fine. I was like all...oookkkkaaayyy.

So now we wait and see what C will do tonight. Although I am very happy she is getting really good sleep today, I am just torn up that she is so out of it and knowing it is because of seizures just sucks. I just really want my C back.


Timothy Hamilton said...

I can't completly understand nor do I believe any man can understand the complete love a mother has or why they have the burden of pain for their children. Maybe it was the 9 month bond they had prior to birth that only they felt every movement.

But your faith is so valued by the Lord that I want you to know, 1st Peter 5:9-11 bascially says, although we will suffer for a little while, by God's Grace and for His Glory we will be retroed on a stronger foundation. I have sent a prayer request to my prayer partners around the world in Israel, South and Central America, the Carribean, Spain, the Far East. One of the recent ones you can see on Facebook on Kalley Beavers Jackson page her 5 year old son is truly a miracle of the power of prayer!
All I ever request is for you to share your testimony one day and give all the Glory to the Lord!

Thank You, Timothy Hamilton

Timothy Hamilton said...

Please keep your faith!

Sharron Johnson said...

Thanking God that C had no brain injury and praying that these seizures are brought under control. Also praying for strength and peace for you and Kevin. So happy that you have the "awesome" nurses and not the "other" ones! You are both awesome parents, C never has to wake to an unfamiliar face.

Ashley said...

My heart breaks for you as a Mommy and not being able to hold your baby. Agree with you about the nurses...does make a big difference. You and Kevin are AMAZING!!! We keep our prayers going for C....that little one is overdue for a break.

~Ashley Stacell