Wren had lots of improvement today. He got rid of tons of fluid (-100CC), opened his eyes a lot, 'lost' 2 central lines, had his catheter removed, his left-hand IV removed and had a feeding tube inserted.
He is still on C-pap and seems to need this to maintain his sats in the 90s and is also on two diuretics to help get rid of a bit more fluid. His pressures are a bit up but the mean arterial pressures are in the 40s-50s which are acceptable right now.
While everything else looked good I was beside myself with anxiety when his toe-temp slumped in the middle of the day - back from the high 30s down to 27 degrees. It was only the lower calf and foot area that was affected but after all the discussion about how the warming up was great I was completely terrified that this meant his heart was under stress. I asked to speak with the fellow and they promised to watch it but felt as an isolated measure it was not uncommon and not too worrying.
Thankfully, this evening after being held by Josh and me for MANY HOURS his toes warmed up to 34 degrees. I hope its still up in the morning.
His only other slightly emerging issue is periods of fast breathing. This could be some fluid in his lungs but no-one seems too worried by it as its isolated and when he is excited. No-one worried but me.
Meanwhile, most encouragingly, he is acting like a normal baby. He is obviously hungry and is likely to be fed through the nose-tube if he is stable overnight. He cries but can be soothed with his binky and rocking. He lies and looks around with interest even though his eyes are a little swollen.
I am going in again early tomorrow and will post a few new pictures in his "graduate" bed. He is now in a crib rather than under a heat lamp in a little table-bed as he was before. He has no heating and is just swaddled. If we have another day like this I may take a breath and feel a moment of peace.
Saturday, December 23, 2006
Swaddled!
Phone update:
Wren has had his catheter removed! He has been swaddled and since receiving the platelets his breathing has eased.
The nurse feels that he is doing much better and said she has picked him up and held him and today he is doing binky practice!
I am not sure whether this is really great or whether he looks better because he has no arterial lines. We are going down to check on him shortly. I am very excited about picking him up!
Wren has had his catheter removed! He has been swaddled and since receiving the platelets his breathing has eased.
The nurse feels that he is doing much better and said she has picked him up and held him and today he is doing binky practice!
I am not sure whether this is really great or whether he looks better because he has no arterial lines. We are going down to check on him shortly. I am very excited about picking him up!
Dec 22nd - Ebb & Flow
This morning I went in early and found Wren very lethargic. The nurse and I deduced that he was over-sedated. He had a few doses of something called "chloryll" overnight to keep him sleepy and then an added single dose of morphine when he needed lots of dressings changed.
Overnight he didn't get rid of as much fluid as they hoped so today the goal is to continue to diuress and to improve the quality of his breathing. They also want to improve his hemocrit (down to a nasty 25 from 32 a couple of days ago) and to check out a distension in his tummy which is probably gas.
They are also hoping he stops struggling with his breathing.
I left him settled and receiving platelets.
Overnight he didn't get rid of as much fluid as they hoped so today the goal is to continue to diuress and to improve the quality of his breathing. They also want to improve his hemocrit (down to a nasty 25 from 32 a couple of days ago) and to check out a distension in his tummy which is probably gas.
They are also hoping he stops struggling with his breathing.
I left him settled and receiving platelets.
Friday, December 22, 2006
Perfusing
Verb 1. perfuse - force a fluid through (a body part or tissue); "perfuse a liver with a salt solution"
I received a phone update on Wren at 3am.
He is acting "pretty comfortable" despite being rolled and managing to sleep however the planned fluid decrease is not going as smoothly as hoped and he is still only -20 on his fluids and he needs to get rid of a lot more. Despite an increase in the diuretic Wren's urine output fell slightly over the past 2 hours. They feel this may indicate that his kidneys are not perfusing as well as they would like since the dopamine was turned off.
So... Dopamine is back on at 5 mcg/kg/hr in hopes of seeing an increase in output.
His BPs were not low so its not as a BP support this time... just in hopes of getting more response from his kidneys. Everything else looks stable.
I shall get another update first thing in the morning.
I received a phone update on Wren at 3am.
He is acting "pretty comfortable" despite being rolled and managing to sleep however the planned fluid decrease is not going as smoothly as hoped and he is still only -20 on his fluids and he needs to get rid of a lot more. Despite an increase in the diuretic Wren's urine output fell slightly over the past 2 hours. They feel this may indicate that his kidneys are not perfusing as well as they would like since the dopamine was turned off.
So... Dopamine is back on at 5 mcg/kg/hr in hopes of seeing an increase in output.
His BPs were not low so its not as a BP support this time... just in hopes of getting more response from his kidneys. Everything else looks stable.
I shall get another update first thing in the morning.
Scary Evening
Wren was extubated this afternoon. That means the tube that had been going down his nose into his airway was removed and the ventilator is no longer providing any breathing support. The process was traumatic for him - probably painful. They stopped the morphine to wake him up enough to take over breathing properly and he cried so much he turned purple. His heartrate went very high and he started having episodes of rapid breathing.
Over the next few hours he seemed quite distressed - whimpering as he breathed and working quite hard doing it. His heartbeat remained high. Anyway, to cut a long story short they called the RT (respiratory therapist) to suction his lungs. This was very very upsetting to Wren and his HB went to 194, BPs rose skyhigh and his breathing was very fast too.
I was very sad because he seemed to be in pain and struggling to breathe. The nurse paged the Fellow and she examined him and they made some changes:
1) Overall she was pleased with how he sounds and thinks that he is doing well for being newly extubated. She thinks he is stressed (they used words like "gets mad" and "fed up" which seem a bit weird for me) and needs to relax.
2) She stopped the Dopamine entirely.
3) He had one shot of morphine to settle him down but from now on will have another drug like benadryl.
4) The goal for today is to make him fluid negative. That means that the amount of fluid he has to pee out is greater than the amount of fluid they have given him. Right now he is VERY fluid positive and so he's still very swollen and his lungs are also a bit wet.
After a few hours he settled down and when we left he was sleeping without the sad noise and his BPs were down (MAPs still 50s or high 40s). His Breathing was in the low 40s (down from 70) and he sounded much less distressed.
I am going to call regularly throughout the night because he had me really worried.
The doctors feel he is doing fine and that the extubation was an important step and a success. The apparent distress is not a sign he's doing badly. BUT its so hard to see him looking so upset.
Over the next few hours he seemed quite distressed - whimpering as he breathed and working quite hard doing it. His heartbeat remained high. Anyway, to cut a long story short they called the RT (respiratory therapist) to suction his lungs. This was very very upsetting to Wren and his HB went to 194, BPs rose skyhigh and his breathing was very fast too.
I was very sad because he seemed to be in pain and struggling to breathe. The nurse paged the Fellow and she examined him and they made some changes:
1) Overall she was pleased with how he sounds and thinks that he is doing well for being newly extubated. She thinks he is stressed (they used words like "gets mad" and "fed up" which seem a bit weird for me) and needs to relax.
2) She stopped the Dopamine entirely.
3) He had one shot of morphine to settle him down but from now on will have another drug like benadryl.
4) The goal for today is to make him fluid negative. That means that the amount of fluid he has to pee out is greater than the amount of fluid they have given him. Right now he is VERY fluid positive and so he's still very swollen and his lungs are also a bit wet.
After a few hours he settled down and when we left he was sleeping without the sad noise and his BPs were down (MAPs still 50s or high 40s). His Breathing was in the low 40s (down from 70) and he sounded much less distressed.
I am going to call regularly throughout the night because he had me really worried.
The doctors feel he is doing fine and that the extubation was an important step and a success. The apparent distress is not a sign he's doing badly. BUT its so hard to see him looking so upset.
Josh says:
BP 53/35 on 3.5 dopamine. He's back to requiring his binky, so I spend a lot of time holding it for him.
The nice Resident that I forget the name of says they found that he had low cortisol levels after the surgery (apparently you normally create it in response to stress [like surgery], and it's common for cardiac patients to not do so) and that probably explains his low BP, so they're supplementing him with cortisone. They hope to step him down off of it once they've extubated him and he's no longer on dopamine. She might be talking about the same thing you heard about steroids. Not sure. They're still hoping to extubate today. . probably this afternoon.
The nice Resident that I forget the name of says they found that he had low cortisol levels after the surgery (apparently you normally create it in response to stress [like surgery], and it's common for cardiac patients to not do so) and that probably explains his low BP, so they're supplementing him with cortisone. They hope to step him down off of it once they've extubated him and he's no longer on dopamine. She might be talking about the same thing you heard about steroids. Not sure. They're still hoping to extubate today. . probably this afternoon.
Middle of one more day
I just spoke with Josh from the room and he says that Wren is not as swollen and is producing "a tremendous amount of pee". His pressures are 70/37 and 55/32 with dopamine down to FIVE!!
I think they will leave him there a while to stabilize. I shall go in this afternoon and see whether they have extubated or how things are going.
I wish I could just hang out there for hours but we are trying to catch up on a few errands and Frost has a pediatrician appointment this PM.
There is a bed in the room and I could lie on it all day and look out over Laurelhurst and Sandpoint way. Its about the 5th floor and there are rows of tall poplars about 15 feet from the window. Every time I sit there I can't help imagining a fire in the hospital and whether I could smash the window and LEAP across into the tree. I decide I couldn't then I wonder whether an aerialist with Circus Oz could do it. A monkey? An ape? Then I wonder how I would save Wren... do the fire doors work? Could they evacuate him with all his machines?
I think this indicates my mental state, anticipating perils and reprieve.
I think they will leave him there a while to stabilize. I shall go in this afternoon and see whether they have extubated or how things are going.
I wish I could just hang out there for hours but we are trying to catch up on a few errands and Frost has a pediatrician appointment this PM.
There is a bed in the room and I could lie on it all day and look out over Laurelhurst and Sandpoint way. Its about the 5th floor and there are rows of tall poplars about 15 feet from the window. Every time I sit there I can't help imagining a fire in the hospital and whether I could smash the window and LEAP across into the tree. I decide I couldn't then I wonder whether an aerialist with Circus Oz could do it. A monkey? An ape? Then I wonder how I would save Wren... do the fire doors work? Could they evacuate him with all his machines?
I think this indicates my mental state, anticipating perils and reprieve.
Very Juicy
Wren was doing very well this morning at my first visit. His 9Am stats were:
Dopamine: 6 mcg/kg/hr
Morphine: 8 mcg/kg/hr
Vent setting: 0 repiration limit (ie only alarming and giving puffs)
Heartrate: 144 BPM
Arterial temp: 36.8 (normal)
Toes: 34.9 C
Breathing: 36 BPM
Saturation: 99% (this is how much oxygen his blood is carrying)
Pressures: - arterial: 76/37
- extremity: 62/40
I was there during rounds when the surgeon and the cardiac team joined the ICU doctors in discussing his case.
They described him as doing well, his perfusion (?) improved dramatically overnight and they agreed he is ready to go off the ventilator and onto C-pap. They are trying to drop his dopamine down adn reduce the morphine slowly. They reviewed the echo findings which showed that the valve is the same and performance of the Left Ventrical is "moderate". Overall the echo evaluation was positive and "things look good".
After rounds the nurse tried to drop the dopamine to 5 but his BPs dropped to the alarm limit so she popped it back up to six and would try again later.
The emerging issue this morning was his oedema. The nurse and intensivist describe him as "pretty juicy" and wonder whether they should hold off extubating until it reduces a bit. The swelling developed overnight and when I came in I was shocked to see him very swollen. His little eyes can't open even though he is more aware and responsive. His belly is shiny and taut. They check the fontanelle regularly for signs of swelling and its still okay but the neonatologist started him on diuretics to help him get rid of some of the fluid bolus that helped his BP yesterday. Apparently the diuretic MAY cause his blood pressure to slump a little.
He is also being given steriods to improve vascular function. Apparently cardiac babies commonly fail to mount a steriod response under low BP conditions while healthy infants will. Wren had a steriod level of 8 while normal is in the 50s. So, they are giving him some instead.
Now, some chatty stuff. The new nurse is very cool. She has just returned from Pakistan where she volunteered as a cardiac nurse, training local nurses in the management of post surgical patients. She went with theInternational Children's Heart Foundation and is going through christmas-culture shock. I don't want to talk too much in case I distract her from her work in testing lines and administering and changing the many things that ping and peep at intervals throughout the day. Anyway, she's very nice and reassuringly excellent at what she does.
Meanwhile, on my walk to the ICU this morning (passing kids with no hair and babies trailing IV lines on guerneys) I walked behind two ladies discussing Christmas shopping:
A: "I have my heart set on this one toilet-seat cover. I phoned Bellevue square but they're out. They say they have one in Issaquah and down at Southcenter so I think I'll go after work."
B: "You're a woman on a mission!"
A: "Oh, its just so pretty and it goes well with the set."
A: "Okay, see you with the chief resident at 11"
So, which is the alternative reality? This one, or the one in which we spend hours to find the right thing. I guess they are both valid but it gives me pause. I hope I bring more insight to my life through this whole process.
Before the birds wake
I am so happy to be able to post another happy update
I just called the CICU for an update on how Wren did overnight. The nurse said he is "doing GREAT"!
Apparently he continued to warm up overnight and is now "nice and toasty". The ventilator settings were dropped again and there is even talk of extubating him soon. He had a sponge bath and wriggled and he is down to 6 on the dopamine. That means that a drop of one or two more and he may get FOOD (breastmilk) for the first time.
So far, since birth he has only had IV lines with HA (dextrose, fats and proteins mixed with some vitamins and important stuff because of concerns about circulation and bowel motility. However, the nurses check his abdomen for bowel sounds and apparently his tummy is gurgling in there meaning its moving and he probably feels hungry.
Our nurse today is going to be "Julie" and I am going in shortly in hopes to catch rounds. As with everything in my life right now, my plans are divided into chunks of [before] and [after] pumping as the lactation consultants say its important to keep doing the roughly 3-hourly routine at least for 2 weeks to ensure I have enough milk for him when he is able to nurse.
I just called the CICU for an update on how Wren did overnight. The nurse said he is "doing GREAT"!
Apparently he continued to warm up overnight and is now "nice and toasty". The ventilator settings were dropped again and there is even talk of extubating him soon. He had a sponge bath and wriggled and he is down to 6 on the dopamine. That means that a drop of one or two more and he may get FOOD (breastmilk) for the first time.
So far, since birth he has only had IV lines with HA (dextrose, fats and proteins mixed with some vitamins and important stuff because of concerns about circulation and bowel motility. However, the nurses check his abdomen for bowel sounds and apparently his tummy is gurgling in there meaning its moving and he probably feels hungry.
Our nurse today is going to be "Julie" and I am going in shortly in hopes to catch rounds. As with everything in my life right now, my plans are divided into chunks of [before] and [after] pumping as the lactation consultants say its important to keep doing the roughly 3-hourly routine at least for 2 weeks to ensure I have enough milk for him when he is able to nurse.
Thursday, December 21, 2006
Late night updates
Wren seems to respond well to our singing, so I'm hanging out next to his bed giving it a go. Unfortunately, all I know are depressing and morbid Celtic lullabies, but since he doesn't understand the lyrics I think they'll be alright.
His stats continue to look good. Most reassuringly, his feet aren't ice cold anymore. Upper temp is a perfect 37C while lower temp is now at 33.4C and rising fast enough that I can see the numbers climb on the monitor. His BP was also looking good enough that they've already lowered his Dopamine dose from 10 to 8 (turns out the unit is micrograms/kilo of weight/minute. There's a unit that needs a shorter name). Upper BP is now 72/34 and lower 60/37. Those are lower than they were at Shannon's update, but that must be from the lowered Dopamine, and the nurse seemed to think they were doing well.
I heard a rumor that the cafeteria opened at 1am, so I'm going to try to get a snack.
-j
His stats continue to look good. Most reassuringly, his feet aren't ice cold anymore. Upper temp is a perfect 37C while lower temp is now at 33.4C and rising fast enough that I can see the numbers climb on the monitor. His BP was also looking good enough that they've already lowered his Dopamine dose from 10 to 8 (turns out the unit is micrograms/kilo of weight/minute. There's a unit that needs a shorter name). Upper BP is now 72/34 and lower 60/37. Those are lower than they were at Shannon's update, but that must be from the lowered Dopamine, and the nurse seemed to think they were doing well.
I heard a rumor that the cafeteria opened at 1am, so I'm going to try to get a snack.
-j
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