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
Warming up!
Wren:
Mum and I had a lovely visit with Wren this evening and I sang him lots of Christmas carols in a squeaky voice. It was very exciting to see some signs of improvment.
While we were in the room his top (upper) temp dropped to 37.4 and his lower temp rose from 27.7 to 29.7. Shortly after surgery his extremity temp was 22 while his core temp was 37 ish so we are very encouraged.
Other good news was that his BPs rose about 10 points upper and lower. The upper one is hovering around 78/39 and the lower around 68/37. This is up significantly and may lead to some dopamine reduction in the morning.
Me:
My fever and chills and aches returned yesterday and I had a horrid night of chills and sweats and little rest. I called the OB who wanted to see me and did some tests. They have taken a CBC to see whether it is infection or viral and due to some other symptoms they started me on Augmentin (strong antibiotic) in case it is a kind of uterine infection. I hope I do better tonight as dragging my frozen/boiling feverish self around is less than fun under the most normal circumstances.
This evening I did some quick Christmas shopping at Bartells while I waited for my prescription to be filled. Thank god for lego.
Thanks to everyone who has offered help and emailed their love, prayers and kindness. I know I have not got back to many of you but so appreciate the thoughts and support.
The ICU is a grueling place to be. We met a family whose baby was just brought in under emergency conditions today. He was born in Bellingham and crashed after birth - he has a critical heart condition (anomalous venous return) that has only palliative surgery and it is touch and go if he makes it. The mom had a C-section so she isn't here but the dad is standing by the bedside and we wish him well.
Meanwhile, a family has been waiting all day in the waiting room crying. We feel very lucky to have Wren through his surgery and hope that he will recover without further major surgery.
Mum and I had a lovely visit with Wren this evening and I sang him lots of Christmas carols in a squeaky voice. It was very exciting to see some signs of improvment.
While we were in the room his top (upper) temp dropped to 37.4 and his lower temp rose from 27.7 to 29.7. Shortly after surgery his extremity temp was 22 while his core temp was 37 ish so we are very encouraged.
Other good news was that his BPs rose about 10 points upper and lower. The upper one is hovering around 78/39 and the lower around 68/37. This is up significantly and may lead to some dopamine reduction in the morning.
Me:
My fever and chills and aches returned yesterday and I had a horrid night of chills and sweats and little rest. I called the OB who wanted to see me and did some tests. They have taken a CBC to see whether it is infection or viral and due to some other symptoms they started me on Augmentin (strong antibiotic) in case it is a kind of uterine infection. I hope I do better tonight as dragging my frozen/boiling feverish self around is less than fun under the most normal circumstances.
This evening I did some quick Christmas shopping at Bartells while I waited for my prescription to be filled. Thank god for lego.
Thanks to everyone who has offered help and emailed their love, prayers and kindness. I know I have not got back to many of you but so appreciate the thoughts and support.
The ICU is a grueling place to be. We met a family whose baby was just brought in under emergency conditions today. He was born in Bellingham and crashed after birth - he has a critical heart condition (anomalous venous return) that has only palliative surgery and it is touch and go if he makes it. The mom had a C-section so she isn't here but the dad is standing by the bedside and we wish him well.
Meanwhile, a family has been waiting all day in the waiting room crying. We feel very lucky to have Wren through his surgery and hope that he will recover without further major surgery.
Daily update: Post-surgery Day 1
Today, Wren was largely stable on his dose of 10 (mg?) dopamine which the neonatology team described as a "moderate" dose. They would like him to be on a dose of 5 post surgery and ascribe the higher dose required to maintain BP, his cold feet and legs to his left heart having some trouble maintaining adequate circulation.
He has also been running a low fever (100ish) and has blood cultures taken today.
On the plus side he is a lot less sick than expected. His lactates are low, urine output is high, upper BPs are okay, he is overbreathing the ventilator and both his morphine and the vent were stepped down to half-dose and 15 BPM respectively. His fever fell over the day on a dose of tylenol.
He is often slightly responsive and the team were very encouraged that he has a circulatory response to stimulus. For example when they suctioned his lungs to remove mucus which builds up since he can't really cough, his heartrate rose, BPs rose and he moved and wriggled. This shows his heart is managing, not just hanging on ok. A lack of response would be a lot more serious.
Tomorrow we are hoping his BPs rise.
The surgical team felt he could be extubated but the intensivists preferred him to remain on the vent and lines until the dopamine is down and he is holding his stats up.
Some Stats:
Upper BPs around: 68/32
Lower BPs around: 55/31
Sats: 98%
Temp: 37.7
Apparently the lower BPs are indicative of the heart having some trouble maintaining circulation because in these instances the arteries ?? in the extremities clamp down reducing flow. However, flow to his hands is good and his kidneys are doing well.
We spend a lot of time with Wren today. Josh sang to him and his BP seemed to rise a bit when he was singing. We also warm his little feet and stroke his head. He is very sweet and lovely even with all the tubes in and we love him very much.
He has also been running a low fever (100ish) and has blood cultures taken today.
On the plus side he is a lot less sick than expected. His lactates are low, urine output is high, upper BPs are okay, he is overbreathing the ventilator and both his morphine and the vent were stepped down to half-dose and 15 BPM respectively. His fever fell over the day on a dose of tylenol.
He is often slightly responsive and the team were very encouraged that he has a circulatory response to stimulus. For example when they suctioned his lungs to remove mucus which builds up since he can't really cough, his heartrate rose, BPs rose and he moved and wriggled. This shows his heart is managing, not just hanging on ok. A lack of response would be a lot more serious.
Tomorrow we are hoping his BPs rise.
The surgical team felt he could be extubated but the intensivists preferred him to remain on the vent and lines until the dopamine is down and he is holding his stats up.
Some Stats:
Upper BPs around: 68/32
Lower BPs around: 55/31
Sats: 98%
Temp: 37.7
Apparently the lower BPs are indicative of the heart having some trouble maintaining circulation because in these instances the arteries ?? in the extremities clamp down reducing flow. However, flow to his hands is good and his kidneys are doing well.
We spend a lot of time with Wren today. Josh sang to him and his BP seemed to rise a bit when he was singing. We also warm his little feet and stroke his head. He is very sweet and lovely even with all the tubes in and we love him very much.
Blood pressure problems
We phoned first thing for an overnight update. The neonatologist said Wren "did okay" overnight although things are not all good. The problem is his blood pressure which is low. This can indicate his left side having trouble pumping.
His BP was 54/29 and drifting downward so they started him in dopamine and a fluid bolus. He was very sensitive to that and his BP went up to 80/45. So then they dropped it back a bit... basically they are tweaking the dopamine and fluids to get good BPs and hope "he can get over this bump himself" over the next few days.
They said this was "not unexpected" as the left side adjusts to handle all the flow and they will do an echo this morning to check on how things look.
Lactates, gases and urine output are all good/okay and his mapps (mean arterial pressures?) are now okay. The intensive care nurse and chief looking after him are doing a long shift (16 hours) and will monitor him throughout.
Please keep up the prayers and lots of healing thoughts.
His BP was 54/29 and drifting downward so they started him in dopamine and a fluid bolus. He was very sensitive to that and his BP went up to 80/45. So then they dropped it back a bit... basically they are tweaking the dopamine and fluids to get good BPs and hope "he can get over this bump himself" over the next few days.
They said this was "not unexpected" as the left side adjusts to handle all the flow and they will do an echo this morning to check on how things look.
Lactates, gases and urine output are all good/okay and his mapps (mean arterial pressures?) are now okay. The intensive care nurse and chief looking after him are doing a long shift (16 hours) and will monitor him throughout.
Please keep up the prayers and lots of healing thoughts.
Wednesday, December 20, 2006
Waiting
We went to see Wren at 10.30pm and the nurse and neonatology fellow said we should go and get some sleep. If he starts to have trouble following the operation they expect it to occur 12-18 hours after the procedure (ie 4-10am... not now). They are hopeful but said we should be around tomorrow for briefings with the doctors and he is stable now.
I can't sleep unfortunately due to another bout of those fever/chills. I don't know when to find time but I will probably head into the doctor for a checkup tomorrow.
Shannon
I can't sleep unfortunately due to another bout of those fever/chills. I don't know when to find time but I will probably head into the doctor for a checkup tomorrow.
Shannon
Indicia
We were able to go in and see Wren shortly after 6pm. It was hard on us to see him buried in a nest of cables and tubes, with all of the fluids and signals dripping in and out of him. His face was puffy and oblivious from the morphine. But everything that mattered was good. Every indicator the doctors looked at was promising. The pulse in his feet was strong (compared to a weak pulse even before the operation), his oxygen saturation levels were optimal, the fluids they were draining had very little blood, and his catheter had plenty of urine (doctors love pee).
Shannon has gone home to spend some time with Frost while I take a nap. We're tired, but elated.
-j
Shannon has gone home to spend some time with Frost while I take a nap. We're tired, but elated.
-j
Success!
We have just had our post-operative conference with the surgeon. The surgery was a complete success.
Dr C said that he was pleased with the outcome and that it went better than he expected. Main points:
1) During surgery he was able to clamp the aorta at the beginning of the aortic arch (far across) which was unexpected. This enabled the surgeon to insert a patch to enlarge much of the aortic arch rather than simply the area of the PDA and coarctation. This gives him much improved flow over the hypoplastic arch area.
2) Pressures are good following surgery.
3) There was a significant discrete coarctation. When Dr C tied off the ductal tissue the coarc completely obstructed the aorta indicating that if this had not been prenatally diagnosed wren would have gone into heart failure as the PDA closed.
4) The arch looked a lot better when the surgeon looked at it than it did on echo. It didn't look as small. Doubt still remains as to whether the valve is sufficient but so far so good.
5) Wren had his aorta clamped for 19 minutes. (There are instances of paralysis following clamping >30 minutes.)
6) Wren is sedated and has many many tubes, central lines etc. They had difficulty inserting IVs so the prep stage took 2 hours. The lines remain in, in case they need to give blood. So far they have not had to give blood.
I am running out of battery power so that will do for now. We are going back to see him shortly. If he remains stable all night (hopefully!) they will evaluate him in the morning and consider pulling him out of sedation etc.
He is intubated through the nose.
Dr C said that he was pleased with the outcome and that it went better than he expected. Main points:
1) During surgery he was able to clamp the aorta at the beginning of the aortic arch (far across) which was unexpected. This enabled the surgeon to insert a patch to enlarge much of the aortic arch rather than simply the area of the PDA and coarctation. This gives him much improved flow over the hypoplastic arch area.
2) Pressures are good following surgery.
3) There was a significant discrete coarctation. When Dr C tied off the ductal tissue the coarc completely obstructed the aorta indicating that if this had not been prenatally diagnosed wren would have gone into heart failure as the PDA closed.
4) The arch looked a lot better when the surgeon looked at it than it did on echo. It didn't look as small. Doubt still remains as to whether the valve is sufficient but so far so good.
5) Wren had his aorta clamped for 19 minutes. (There are instances of paralysis following clamping >30 minutes.)
6) Wren is sedated and has many many tubes, central lines etc. They had difficulty inserting IVs so the prep stage took 2 hours. The lines remain in, in case they need to give blood. So far they have not had to give blood.
I am running out of battery power so that will do for now. We are going back to see him shortly. If he remains stable all night (hopefully!) they will evaluate him in the morning and consider pulling him out of sedation etc.
He is intubated through the nose.
Liftoff
We've just been paged by the hospital beeper and informed that the actual surgery has begun. The estimate was that, if things go well, the surgery should take about an hour.
Asleep
Wren was taken into the OR at 1:45 for anesthesia. Apparently it can take up to 2 hours to sort out all of the lines that have to go into him (some only there in case the emergency Norwood happens), so he might not get into surgery until 3:45. In the meantime we're trying to get one of the sleeping rooms here. They're little cubicles with beds and showers. We feel a little greedy trying to get one when we only live 10 minutes away, but after so many nights of 5-6 hours of sleep, that 10 minute drive looks like a marathon, and the chance to take an elevator up to a bed would be very welcome.
Surgery will be on today
We don't know when but the OR team have confirmed that they will be doing us as a "second case" today.
Apparently there is no concern about the team doing the planned surgery during the normal work day, however if the "emergency" Norwood is required it will take till 7 or 8pm +.
Josh's Mom has arrived from Longview and is reading books to Frost in the waiting area. He and my Mom will be going home soon for Frost's playdate with Ariadne.
Apparently there is no concern about the team doing the planned surgery during the normal work day, however if the "emergency" Norwood is required it will take till 7 or 8pm +.
Josh's Mom has arrived from Longview and is reading books to Frost in the waiting area. He and my Mom will be going home soon for Frost's playdate with Ariadne.
Surgery delayed a bit
When we came in this morning we were told that the OR had run out of some fluids they require. They finally came in a bit after 9am but this delayed the beginning of the first case and thus we have been delayed also.
We have been told that Wren's surgery will either start late or may even be postponed until tomorrow if the surgeon feels it is too late for him to do a second case.
Ugh.
At least we have spent some time with Wren this morning and he is looking good. The cardiologist we met first over here came by and said that although there is a risk to doing this procedure he believes we are making the right decision in giving it a chance. He feels that it is almost certain that another surgery will be required in future and the worry is mainly centered on the aortic valve but it is a good chance. He mentioned that a recent patient with similar presentation did poorly after a similar repair and had to revert to a Norwood under emergency conditions BUT that experience should not guide the surgical decision - they should rely on the best odds and the data which supports doing the biventricular repair.
So, here we wait.
We have been told that Wren's surgery will either start late or may even be postponed until tomorrow if the surgeon feels it is too late for him to do a second case.
Ugh.
At least we have spent some time with Wren this morning and he is looking good. The cardiologist we met first over here came by and said that although there is a risk to doing this procedure he believes we are making the right decision in giving it a chance. He feels that it is almost certain that another surgery will be required in future and the worry is mainly centered on the aortic valve but it is a good chance. He mentioned that a recent patient with similar presentation did poorly after a similar repair and had to revert to a Norwood under emergency conditions BUT that experience should not guide the surgical decision - they should rely on the best odds and the data which supports doing the biventricular repair.
So, here we wait.
Tuesday, December 19, 2006
Quick surgery summary for newbies
Wren is scheduled to have his first heart surgery this afternoon PST. He is 5 days old and in the NICU.
The surgery will repair a coarctation in his aorta and remove the PDA - forcing his left heart to pump all the blood he needs. Till now he has been maintained on prostglandins.
Simple Coarc Surgery diagram
Although the surgeons recommend we try this procedure - as his left heart structures are all small to borderline - they do not know whether it will work or cause him to go into heart failure. If he shows signs of heart stress / failure in the hours or days after the procedure they will try and reverse the repair and go ahead with a Norwood.
Norwood Surgery diagram
As a result, the surgeon is not doing a simple end-to-end anastamosis but will be inserting a gortex patch in the region of the coarc to ensure he can revert to a Norwood should it be required in an emergency.
Obviously, this surgery is not as high risk as many others - he should be out within 2 hours - but the post operative period is going to tell us whether he will have a chance of a biventricular repair or will become very sick and need emergeny intervention.
The surgery will repair a coarctation in his aorta and remove the PDA - forcing his left heart to pump all the blood he needs. Till now he has been maintained on prostglandins.
Simple Coarc Surgery diagram
Although the surgeons recommend we try this procedure - as his left heart structures are all small to borderline - they do not know whether it will work or cause him to go into heart failure. If he shows signs of heart stress / failure in the hours or days after the procedure they will try and reverse the repair and go ahead with a Norwood.
Norwood Surgery diagram
As a result, the surgeon is not doing a simple end-to-end anastamosis but will be inserting a gortex patch in the region of the coarc to ensure he can revert to a Norwood should it be required in an emergency.
Obviously, this surgery is not as high risk as many others - he should be out within 2 hours - but the post operative period is going to tell us whether he will have a chance of a biventricular repair or will become very sick and need emergeny intervention.
Night visit
Josh went to visit Wren after midnight. He was wide awake and looked around a lot which was a suprise as he has been very sleepy. Yesterday he received a day of light therapy so perhaps he was feeling more alert after that - they wanted to get it done before the surgery because he is not going on bypass.
Josh said he held him for a long time and had a long chat with him while he looked about.
We will all head off to the hospital around 9am to spend some time with Wren before the anaesthesia team come to do their prep. They could come in as early as 10.30am, depending on how long the first surgery runs.
We are hoping Frost enjoys the "kids room" which has an X-box so Mum can hang out with us a bit. I have asked for a sleeping room at the hospital so I may be able to get some naps once Wren is stable after surgery.
Shannon
Josh said he held him for a long time and had a long chat with him while he looked about.
We will all head off to the hospital around 9am to spend some time with Wren before the anaesthesia team come to do their prep. They could come in as early as 10.30am, depending on how long the first surgery runs.
We are hoping Frost enjoys the "kids room" which has an X-box so Mum can hang out with us a bit. I have asked for a sleeping room at the hospital so I may be able to get some naps once Wren is stable after surgery.
Shannon
Small pleasures / covert action
Josh and I did a covert diaper change tonight. We had been with Wren a few hours while the nurse was busy off-and-on. He seemed restless so Josh suggested he may need a diaper change. Normally, one is supposed to call the ICU bedside nurse (we ask for permission to hold him and move him as he is hooked up to lots of tubes and sensors). Anyway, this time we decided to just do it ourselves!
I managed to find the surgical gauze they use, the diaper stash etc. We even remembered to keep the diaper for weighing! (it was 50g! Bet you never weighed a wet diaper) and we changed his diaper. Having him in the ICU all strapped in and under lights - he has jaundice - makes us kind of tentative in treating him as really our baby to do things with so it was wonderful to do this simple thing.
I have also got set up to pump in his room. The lactation consultant was super-supportive and I have a referral to Occupational Health and Physical Therapy who will work with us to help Wren get used to nursing after all this nightmare is over, or at least we know which path we are taking in getting through it.
I managed to find the surgical gauze they use, the diaper stash etc. We even remembered to keep the diaper for weighing! (it was 50g! Bet you never weighed a wet diaper) and we changed his diaper. Having him in the ICU all strapped in and under lights - he has jaundice - makes us kind of tentative in treating him as really our baby to do things with so it was wonderful to do this simple thing.
I have also got set up to pump in his room. The lactation consultant was super-supportive and I have a referral to Occupational Health and Physical Therapy who will work with us to help Wren get used to nursing after all this nightmare is over, or at least we know which path we are taking in getting through it.
Surgery Tomorrow afternoon
Its been a big day for us. Josh and I attended rounds this morning and heard that the cardiac team had decided to go ahead with the coarc repair. We have since had a long consult with the surgeon and the surgery is scheduled for noonish tomorrow.
Apparently, the decision to take this approach rather than the more extreme Norwood procedure was controversial among the team. The surgeon confessed he was the most sceptical and while he was hopeful he had seen patients "do poorly" after a biventricular repair with small left-side dimensions like Wrens. However, there is hope.
The surgery will begin around noon and should be done within a couple of hours. In this case, the surgery itself is relatively straightforward. The Surgeon will do a thoracotamy and tie off the PDA. He will then disect the aorta distal to the PDA and insert a gortex patch shaped like an eye. This will enlarge the aorta and allow it to be repaired without sectioning. That is important in the case that Wren goes into some form of heart failure following the surgery (ie if the narrow aortal valve or some left side structure is too small to cope despite the blockage being removed). In that case an "emergency" norwood will be performed. I won't go into that.
Unfortunately, the outcome will not be clear for some hours, days or even weeks. They will be monitoring him closely to look for things like lactate levels and urine output as well as the usual cardiac sats, stats etc.
I am exhausted, so is Josh. We have been running back and forward all day. Even so we have managed to spend a long time with Wren today and I hope to take Mum down this evening if we ever get bedtime done.
Frost will be visiting Ariadne for part of tomorrow while I plan to remain at the hospital most of the day (and perhaps night). I think Mum may need some relief so I may be calling some of you who have offered to help with Frost (who has become a bit frustrated with all our absences but is thrilled to be offered so many playdates even if I haven't managed to implement many yet!) Thanks for all the support - I feel terrible not to have returned calls and emails but I can't even find my own cellphone let alone remember who I have and haven't spoken with. Please bear with us. I shall continue to post updates here... during and after surgery.
Shannon
Apparently, the decision to take this approach rather than the more extreme Norwood procedure was controversial among the team. The surgeon confessed he was the most sceptical and while he was hopeful he had seen patients "do poorly" after a biventricular repair with small left-side dimensions like Wrens. However, there is hope.
The surgery will begin around noon and should be done within a couple of hours. In this case, the surgery itself is relatively straightforward. The Surgeon will do a thoracotamy and tie off the PDA. He will then disect the aorta distal to the PDA and insert a gortex patch shaped like an eye. This will enlarge the aorta and allow it to be repaired without sectioning. That is important in the case that Wren goes into some form of heart failure following the surgery (ie if the narrow aortal valve or some left side structure is too small to cope despite the blockage being removed). In that case an "emergency" norwood will be performed. I won't go into that.
Unfortunately, the outcome will not be clear for some hours, days or even weeks. They will be monitoring him closely to look for things like lactate levels and urine output as well as the usual cardiac sats, stats etc.
I am exhausted, so is Josh. We have been running back and forward all day. Even so we have managed to spend a long time with Wren today and I hope to take Mum down this evening if we ever get bedtime done.
Frost will be visiting Ariadne for part of tomorrow while I plan to remain at the hospital most of the day (and perhaps night). I think Mum may need some relief so I may be calling some of you who have offered to help with Frost (who has become a bit frustrated with all our absences but is thrilled to be offered so many playdates even if I haven't managed to implement many yet!) Thanks for all the support - I feel terrible not to have returned calls and emails but I can't even find my own cellphone let alone remember who I have and haven't spoken with. Please bear with us. I shall continue to post updates here... during and after surgery.
Shannon
Monday, December 18, 2006
Rapid breathing
Wren has been having episodes of rapid breathing which is apparently associated with his heart condition. He should be breathing at 30-60 BP minute but is having periods of 80-100. The doctors are watching it. Since his stats (and sats) remain good they don't think it is exhausting him and will give him some medication if it develops as a problem.
Daily update: NICU Day Four
Frost and Shannon visiting Wren at Children's.
This morning Wren remains stable. I attended rounds in which the nurses, doctors and specialists reviewed his case and made plans for the day. They said he was stable, had mild jaundice (13.3 bilirubin) and was doing well with sats and vitals. Blood gases are still good (in the mid 7's). Their goal was to keep him relaxed and stable.
An EKG was done confirming his heart is doing okay now. I was there while they changed a diaper (he is very sensitive to wet diapers) and soothed him back to sleep with his sugar-water binky.
I met a second cardiologist who was very kind and attentive. For once there was someone to answer my questions and make sense of the process the team will go through in making the surgical decisions. He said that the conference tomorrow will come up with a recommedated surgery and it will likely be performed next week. The recommendation will take into account the desired biventricular outcome but will be limited by "what a surgeon can do". He said that while "you can tell a surgeon you want this and this done it won't work if he just can't do it" and that "different surgeons favor different approaches based on their best outcomes". He said they had done a norwood on a similar case in the past but it wasn't considered desirable.
He clarified Wren's diagnosis as:
1) Coarctation of the aorta. (discrete, distal to PDA)
2) Hypoplastic aortic arch (limited)
3) Hypoplastic aortic valve (borderline??)
I don't know whether we could move him to another hospital if they offer a different surgery - ie babies do well with a biventricular repair. I am going to have to talk to our other cardiologist and see.
Shannon
Reprieve for me
The NICU says I can visit, regardless of last nights fever. If I am sneezing or coughing (not) I have to wear a mask.
I am going to see the Lactation Consultant this morning in case its mastitis. The OB seemed to think it was not likely to be due to viral infection as there are many post-partum reasons for a fever at under 72 hours.
I am really really happy I can go in and see him today.
Pictures of us later.
I am going to see the Lactation Consultant this morning in case its mastitis. The OB seemed to think it was not likely to be due to viral infection as there are many post-partum reasons for a fever at under 72 hours.
I am really really happy I can go in and see him today.
Pictures of us later.
Sunday, December 17, 2006
Feeling blue - the third echo & fever
We can't seem to escape the shadow of the Norwood procedure - the most dangerous and radical surgery proposed to treat Wren's condition. Tonight Wren was transferred to Children's Hospital and underwent another battery of tests:
An echocardiogram
A chest x-ray
Blood gases (stabbing and squeezing his little foot repeatedly to draw a thin tube of blood which then coagulates too quickly to process while he shrieks and turns red)
Pulses
etc
After viewing the echo the cardiologist said they would need to consider treatment for the stenotic aortic valve because "it will not develop properly" and "some kind of repair is going to be needed sooner or later" AND resolve the coarc and hypoplasia proximal to the PDA entry.
Then he mentioned "if they decide the Norwood is the best approach we will need to open the ASD (atrial septal defect) because its a bit small. ARGH. I really don't understand how they get from a sufficient left ventricle to the Norwood in one foul swoop.
I am now terrified that our little guy will need this Norwood - Fontan surgery and that this hospital is not the best place for it. I am terrified we will lose him and already I cannot imagine life without him in our family. He is the most gorgeous little soft-haired bundle who LOVES to suck on anything he can find and would just be the perfect little baby to have at home but for the cardiac condition. His fingers love to grasp on mine and he calms down if you say "shhhhh shhhhh" near his ear. He loves being swaddled and rocked by us and I'd like to hang out with him all day. I am considering taking up knitting so I can just spend time there with him doing nothing much else.
Now, in a stroke of bad luck I have developed a fever this evening which may be something to do with milk coming in or may be mastitis, bladder - who knows. Regardless, this means I cannot see Wren-ben until its resolved and I miss him awfully. My OB suggested I come in to the ER until they can see me if it is not gone by tomorrow. I do not know what the NICU protocol is for things like this. I suspect it will be at least 24 hours after the fever goes.
Can you tell I am feeling miserable?
An echocardiogram
A chest x-ray
Blood gases (stabbing and squeezing his little foot repeatedly to draw a thin tube of blood which then coagulates too quickly to process while he shrieks and turns red)
Pulses
etc
After viewing the echo the cardiologist said they would need to consider treatment for the stenotic aortic valve because "it will not develop properly" and "some kind of repair is going to be needed sooner or later" AND resolve the coarc and hypoplasia proximal to the PDA entry.
Then he mentioned "if they decide the Norwood is the best approach we will need to open the ASD (atrial septal defect) because its a bit small. ARGH. I really don't understand how they get from a sufficient left ventricle to the Norwood in one foul swoop.
I am now terrified that our little guy will need this Norwood - Fontan surgery and that this hospital is not the best place for it. I am terrified we will lose him and already I cannot imagine life without him in our family. He is the most gorgeous little soft-haired bundle who LOVES to suck on anything he can find and would just be the perfect little baby to have at home but for the cardiac condition. His fingers love to grasp on mine and he calms down if you say "shhhhh shhhhh" near his ear. He loves being swaddled and rocked by us and I'd like to hang out with him all day. I am considering taking up knitting so I can just spend time there with him doing nothing much else.
Now, in a stroke of bad luck I have developed a fever this evening which may be something to do with milk coming in or may be mastitis, bladder - who knows. Regardless, this means I cannot see Wren-ben until its resolved and I miss him awfully. My OB suggested I come in to the ER until they can see me if it is not gone by tomorrow. I do not know what the NICU protocol is for things like this. I suspect it will be at least 24 hours after the fever goes.
Can you tell I am feeling miserable?
Children's Transfer
I went in this morning for the 9am care and saw Wren. He is now receiving a treat of having his binky dipped in sugar water which calms him down a lot more easily. Since he's never tasted anything else since he has been born he considers this a big treat.
While there we met the intensivist and cardiologist. Apparently the NICU is short on beds due to overnight premie admissions and Wren needs to be moved. I stressed that we would rather he go directly to Children's rather than moved up to the Swedish PICU for a couple of days... and Dr K managed to obtain orders from Children's although the surgeons have not had time to review our tapes.
Wren will be transferred over by the Children's Transport team (nurse, Dr, respiratory specialist etc) some time after 1pm PST. We plan to meet him over there when he is settled in either the Infant ICU or the CICU.
I will post more when this has gone ahead.
While there we met the intensivist and cardiologist. Apparently the NICU is short on beds due to overnight premie admissions and Wren needs to be moved. I stressed that we would rather he go directly to Children's rather than moved up to the Swedish PICU for a couple of days... and Dr K managed to obtain orders from Children's although the surgeons have not had time to review our tapes.
Wren will be transferred over by the Children's Transport team (nurse, Dr, respiratory specialist etc) some time after 1pm PST. We plan to meet him over there when he is settled in either the Infant ICU or the CICU.
I will post more when this has gone ahead.
The Plumber
The day BEFORE Wren was born I arranged for the plumber to come and cap off our old water installation in the kitchen. He was late due a problem on another job and so his team only finished up late on the 12th December. He knew I was due anytime.
When I came home Josh mentioned we had received the bill and it had a long apology and note attached saying he was only charging us one hour of their time and no materials (although it took at least two) because of the mess-up and he knew I was expecting to deliver soon.
That was the second to last big job on my list :)
Shannon
When I came home Josh mentioned we had received the bill and it had a long apology and note attached saying he was only charging us one hour of their time and no materials (although it took at least two) because of the mess-up and he knew I was expecting to deliver soon.
That was the second to last big job on my list :)
Shannon
The Electrician
I was discharged last night. When I returned home I saw our electrical permit out in the kitchen. In the throes of my extremely detailed birth story I forgot to add that we had our Final Electrical Inspection 6 hours before Wren was born. In early labor I called the DPD and confirmed the inspector would be over in the afternoon and when he arrived around 2pm I managed to come in and see him between contractions.
It seems very funny in retrospect. We have been remodelling our kitchen for ages and I think the electrical inspection was my last important TO DO on the "Before going into labor" list.
Shannon
It seems very funny in retrospect. We have been remodelling our kitchen for ages and I think the electrical inspection was my last important TO DO on the "Before going into labor" list.
Shannon
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