Haley slept really well last night. She is even able to roll over and lay on her side.
We are still waiting to figure out her oxygen, she is on 1 liter per hour but is O2 level is hanging around 93 to 95. When she moves around it drops, when she takes a slow 3 min walk it gets down to high 70's/ low 80's, thats with oxygen on.
We need her lungs to open up, and work well with her heart.
We have an echo today. And we will ask the doc if Haley is allowed to visit the outside garden on the 3rd floor today. She's itchin to get outside. She woke up this morning and looked out side and said, It looks so beautiful outside today. Hopefully we can do that.
Monday, March 18, 2013
Sunday, March 17, 2013
Post Op day 4
Last night was a bit rough. Haley had been on sleep meds since she got out of surgery so they were weaning her down incredibly slow. They turned it by .1 every 4 hours. So it just so happened she was awake most of the day yesterday, fell asleep around 10. The med hit 0 at 3am. Haley woke up at 330 and hasnt slept. She is silly tired.
She is a rockstar and has just blown away the doctors. Thank you for your prayers! So far today we got the c pap canula out, moved to a regular nasal canula, removed the central line from her neck, and she even took a lap around the floor! Woot! She is just checking all her goals off in record time!
She is a rockstar and has just blown away the doctors. Thank you for your prayers! So far today we got the c pap canula out, moved to a regular nasal canula, removed the central line from her neck, and she even took a lap around the floor! Woot! She is just checking all her goals off in record time!
Saturday, March 16, 2013
Post Op Day 3
Last night went well. She was wake more. I was up with her until about 1am then nick took over. she was in and out of sleep a bit all night. She just fell asleep about 10am. We weaned the nitric. They turned it off around 1, but her O2 levels dropped with in about 3 minutes so they turned it back on to 1. They tried again at 4am and it has been successful so far! She is still on high O2. she is at 60% flowing at 15 liters per hour. It was 20 but last night we were able to drop it to 15. It has to be uncomfortable, when we take it off to wipe her nose the air is powerful enough to blow her bangs straight up. She is being a trooper with it though. To compare, she is on 1 liter per hour at home.
her O2 levels drop pretty good when we take it off to wipe her face. She is still on two meds that help her heart beat, but on pretty low doses though.
her O2 levels drop pretty good when we take it off to wipe her face. She is still on two meds that help her heart beat, but on pretty low doses though.
Friday, March 15, 2013
Post Op Day 2 (updated 11pm)
Last night went well. Haley is still on the breathing machine, but she was breathing mostly on her own all night. Woot! She is still on nitric and oxygen. Her cardiologist came by today. That was good to talk with him.
We are not having visitors until she has most of the tubes out of her face, and is awake. Hopefully later today. She wakes up sometimes and mouths that she is thirsty. I told her I will give her water as soon as her tummy wakes up. If its still sleeping the water will just sit in there. So she negociates....just a sip, ....with a straw....with a spoon.... ice. Shes funny.
They are going to take her off the machine in a few minutes. We are praying for no nose bleeds while they take it out. Of course everyone was unaware she had posterier nose bleeds, so that was fun explaining it to them.
So after she is off the machine, we will be able to wake her up more and see what happens.
OH and Last night a girl here got a new heart!! God bless organ donors.
UPDATE: The breathing tube came out great. They replaced it with a c-pap machine blowing oxygen and nitric, but she is breathing on her own. She looks great. Her stats are good. There is some pain when she wakes up in her chest and in her throat but they are still keeping her sedated just not as much as before. She is resting now. The plan is to slowly let her wake up today and manage any pain.
UPDATE 11PM: Haley was awake for about 2 hours today, she was talking and sipping some water. Her first try on juice made her tummy hurt. We tried again tonight and it was pretty successful, she also took all her regular meds by mouth and ate some jello! Her NG tube is out.
They have been slowly weaning her from the nitric oxide. I believe she started on 12, she is down to 3 and will go down 1 more each hour until 0. As long as her stats stay up.
We will see how it goes.
We are not having visitors until she has most of the tubes out of her face, and is awake. Hopefully later today. She wakes up sometimes and mouths that she is thirsty. I told her I will give her water as soon as her tummy wakes up. If its still sleeping the water will just sit in there. So she negociates....just a sip, ....with a straw....with a spoon.... ice. Shes funny.
They are going to take her off the machine in a few minutes. We are praying for no nose bleeds while they take it out. Of course everyone was unaware she had posterier nose bleeds, so that was fun explaining it to them.
So after she is off the machine, we will be able to wake her up more and see what happens.
OH and Last night a girl here got a new heart!! God bless organ donors.
UPDATE: The breathing tube came out great. They replaced it with a c-pap machine blowing oxygen and nitric, but she is breathing on her own. She looks great. Her stats are good. There is some pain when she wakes up in her chest and in her throat but they are still keeping her sedated just not as much as before. She is resting now. The plan is to slowly let her wake up today and manage any pain.
UPDATE 11PM: Haley was awake for about 2 hours today, she was talking and sipping some water. Her first try on juice made her tummy hurt. We tried again tonight and it was pretty successful, she also took all her regular meds by mouth and ate some jello! Her NG tube is out.
They have been slowly weaning her from the nitric oxide. I believe she started on 12, she is down to 3 and will go down 1 more each hour until 0. As long as her stats stay up.
We will see how it goes.
Wednesday, March 13, 2013
Heart Surgery **UPDATED**
Haley went back about 1130am. She did pretty well. There were some tears. after the pain of the lung biopsy, she is scared of the pain. By the time she was through the OR doors she was calm.
I just got a call from the nurse. The surgeon just started surgery about 1pm. They said they put in a 2 IV's, an arterial line, and a central line in her neck. The neck thing weirds me out, my poor baby!
She will come out with those lines, a breathing tube, folley cath, drain tube, I think thats it....
I will update when I have something to update. :-)
Haley did really well during surgery. She came out on oxygen and nitric, and about 20 other meds. She has the breathing tube, feeding tube, central line in her neck, IV in her hand and on her ankle, folly cath, O2 censors stuck to her forehead and her lower back, drain tube, a heart stimulator (we havent needed it, praise God) and about 20 lines going into her central line of meds.
I just got a call from the nurse. The surgeon just started surgery about 1pm. They said they put in a 2 IV's, an arterial line, and a central line in her neck. The neck thing weirds me out, my poor baby!
She will come out with those lines, a breathing tube, folley cath, drain tube, I think thats it....
I will update when I have something to update. :-)
Haley did really well during surgery. She came out on oxygen and nitric, and about 20 other meds. She has the breathing tube, feeding tube, central line in her neck, IV in her hand and on her ankle, folly cath, O2 censors stuck to her forehead and her lower back, drain tube, a heart stimulator (we havent needed it, praise God) and about 20 lines going into her central line of meds.
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