We got to go upstairs to the cardiac ward tonight at 6pm. Chloe even got up and walked to the bathroom with us helping her a bit. She is of course a bit shaky but she is sure a strong little girl. Can't believe how fast she is progressing.
Paul is staying the night with her tonight and he will probably go home Friday. I will stay with her tomorrow and until we go home. Hooray!
Wednesday, September 12, 2012
Wednesday
Chloe had to get some blood this morning because her hemoglobin was just a tiny bit lower than they wanted. She had a great night. They now have the central line out of her neck and the ART line out of her arm. Right now she just has her IV's saline locked, so she is not hooked up to anything! And her hands are now free. She is much more content now. We are going upstairs at some point today. Right now we are waiting for the room upstairs to be cleaned. She is able to take all her meds orally now. And she is happy to have the catheter out and diaper off. And now she can wear PJ's!
So far, so good. At this rate we'll actually get out of here way faster than we ever have before!!
So far, so good. At this rate we'll actually get out of here way faster than we ever have before!!
Tuesday, September 11, 2012
Chest tube
They took her chest tube out around 4pm today. Apparently she watched the surgeon pull it out and hardly flinched! He was pretty impressed. So was I- we left the room for it so we were out of the way. i don't think I would have been watching even if we were there.
She was able to eat some Popsicles, a few bites of a sandwich, a slice of cucumber and some diced peaches.
She is doing really well. The nipride is off. So is the morphine. They can give her a bolus if she needs something. They have been giving her zofran (like strong gravol- all too familiar to me from when hailey had her chemo) so she won't get an upset stomach again. She had thrown up a couple times in the night.
She is breathing better too. She had been a bit coarse from the intubation for the MRI and surgery.
If they had a bed available upstairs she could probably get out of the ICU. They are hoping for tomorrow. They can take out the arterial line and central line before she goes to 4C
She was able to eat some Popsicles, a few bites of a sandwich, a slice of cucumber and some diced peaches.
She is doing really well. The nipride is off. So is the morphine. They can give her a bolus if she needs something. They have been giving her zofran (like strong gravol- all too familiar to me from when hailey had her chemo) so she won't get an upset stomach again. She had thrown up a couple times in the night.
She is breathing better too. She had been a bit coarse from the intubation for the MRI and surgery.
If they had a bed available upstairs she could probably get out of the ICU. They are hoping for tomorrow. They can take out the arterial line and central line before she goes to 4C
After rounds
They took out her catheter after rounds. They also cut her nipride in half. They will have to make sure her blood pressure doesn't get too high. But so far, so good.
They gave her apple juice and she wants more. Surprise, surprise. In awhile she can try food.
They want to take the medial steinal chest tube out today but leave the JP's in (the side chest tubes). They also want to take out the central line in her neck. They use that to measure her central venous pressure.
After they take out the chest tube they will wean the morphine.
They gave her apple juice and she wants more. Surprise, surprise. In awhile she can try food.
They want to take the medial steinal chest tube out today but leave the JP's in (the side chest tubes). They also want to take out the central line in her neck. They use that to measure her central venous pressure.
After they take out the chest tube they will wean the morphine.
Early morning Tuesday
Chloe is doing well. She had an x-ray early in the morning. Her blood gasses look good. They have her on small bit of morphine and Tylenol every 6 hours. They have her oxygen prongs off now- which Chloe is relieved about. They were making her nose feel itchy.
They still have nipride up to 4 (think that's max) but should get that down soon.
She got her LA (left atrial) line out this morning. One step closer to upstairs!
She keeps asking for snacks -and she's getting more and more specific in what she wants. It's kind of comical. They finally let her have some ice chips, but only a few spoonfuls at a time. She always wants MORE but that seems to appease her a bit anyway.
Rounds will come around in the next hour so I'll know more then.
They still have nipride up to 4 (think that's max) but should get that down soon.
She got her LA (left atrial) line out this morning. One step closer to upstairs!
She keeps asking for snacks -and she's getting more and more specific in what she wants. It's kind of comical. They finally let her have some ice chips, but only a few spoonfuls at a time. She always wants MORE but that seems to appease her a bit anyway.
Rounds will come around in the next hour so I'll know more then.
Monday, September 10, 2012
Extubation!
So she was pretty annoyed and hard to keep settled. They stopped her sedation and lowered her morphine. Then took the breathing tube out. That's way faster than any other time we've done this. She is happier now.
Surgery is done
So the surgery is done. We got to see her around 1:30pm. Dr Rebeyka came out to talk to us. The surgery went very well. He was able to put in a fairly large conduit this time so this surgery should last longer (cross your fingers). He put in a size 20mm conduit and he said for someone my size he'd probably only have to use a 22mm so this should last her awhile and she may only have to do this surgery once more!
He was able to repair the valve so there is minimal leaking. He said she is still too small for an adult sized valve, but if the valve starts to leak more down the road they will have to replace it. If they can wait until she's big enough for an adult valve (around 5 years?) then it can last "forever" (as long as it doesn't clot or get infected). They are also working on studies with the new valves they have to use only aspirin to prevent clotting instead of warfarin/coumamin (warfarin can have adverse side effects when taken for a long time).
She did not need a transfusion in the OR (just blood on the bypass machine).
They also widened her pulmonary artery farther from the heart where it branches off because it was slightly narrowed. All in all they are happy with how it turned out.
They have her on morphine for pain, midazolam (sedative and it is kind of a mild amnesiac so she probably won't remember the first day or two in the PICU), nipride (to control the blood pressure/pressures inside her heart), milrinone (helps to relax heart and dilate the blood vessels so her heart doesn't have to work so hard), and occasional bolusses of morphine or propol (i think that's the name) to keep her settled.
She has already tried at least twice to pull out the breathing tube or turned her head and fought against everything. It's kind of scary -she's so strong. But they seem to have her settled more now. I thought I was ready for this after 3 times going through it, but she is so big now that she is fighting it and i worry she is going to get hurt.
They hope to have her extubated by tomorrow, but we will see. I will update more later. Hopefully I didn't forget anything.
He was able to repair the valve so there is minimal leaking. He said she is still too small for an adult sized valve, but if the valve starts to leak more down the road they will have to replace it. If they can wait until she's big enough for an adult valve (around 5 years?) then it can last "forever" (as long as it doesn't clot or get infected). They are also working on studies with the new valves they have to use only aspirin to prevent clotting instead of warfarin/coumamin (warfarin can have adverse side effects when taken for a long time).
She did not need a transfusion in the OR (just blood on the bypass machine).
They also widened her pulmonary artery farther from the heart where it branches off because it was slightly narrowed. All in all they are happy with how it turned out.
They have her on morphine for pain, midazolam (sedative and it is kind of a mild amnesiac so she probably won't remember the first day or two in the PICU), nipride (to control the blood pressure/pressures inside her heart), milrinone (helps to relax heart and dilate the blood vessels so her heart doesn't have to work so hard), and occasional bolusses of morphine or propol (i think that's the name) to keep her settled.
She has already tried at least twice to pull out the breathing tube or turned her head and fought against everything. It's kind of scary -she's so strong. But they seem to have her settled more now. I thought I was ready for this after 3 times going through it, but she is so big now that she is fighting it and i worry she is going to get hurt.
They hope to have her extubated by tomorrow, but we will see. I will update more later. Hopefully I didn't forget anything.
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