So the yang has been going well. After my talk with Dr J, I decided to just release all my expectations and go with the flow. I was ready for however long we needed to be here and do whatever the docs say we needed to. The second you give something up, it seems to come to you...
You know when doctors start throwing out the word "discharge", you have about a week or so left barring any unforeseen things. They started talking about it on Monday, so keep your fingers crossed.
It has been a big few days for Molly and mostly all for the good. We got an awesome new attending physician in the PICU who moves fast. His first mission was to get Molly off the Milrinone and her central line out asap. Yesterday cardiology came by to say they were going to slowly wean her off the milrinone and possibly she'd be off by Friday. 10 minutes later I'm in rounds and Dr Willson (my fav new attending) is directing them to stop it immediately and pull the central line. I thought cards changed their mind, but when I mentioned it later, they were surprised (but fine with it). Yay! Dr Willson came by later to remove her central line, thus making Molly wireless once more. He said his reasons for the quick move was risk of infection. He said they had a kid the day before who was supposed to get their line out the next day and got an infection. Now they are stuck here for 2 more weeks on antibiotics.
The EP has been in the do some tweaking on Molly's pacer. We've been noticing that sometimes her heart rate suddenly drops to the 100s for no reason. When he did the check he saw that her atrial lead (the one that senses her atrial rate to tell the ventricle what to pace at) was picking up some reverberations from the ventricles pace and trying to pace that. So the machine was switching modes and doing this drop thing. It doesn't hurt her in any way, but they want to tweak it so it doesn't happen. Yesterday they made the lead less sensitive and she's had way less spells of this. Again, these pacers are made for old people, so retrofitting them to work for a baby takes time and adjustments.
So Molly is off all her iv meds and back on all her oral meds (with a few more added for bonus). We've officially crossed over into only being here for feeding. She is still not eating the volume that they need her to eat in order to get all she needs. Cardiology said they would be fine sending us home with an ng tube (feeding tube) so we can supplement whatever she doesn't take by mouth. We're fine with that too because she needs the nutrition. However, Dr Willson (in another awesome move) let us pull the feeding tube to see how she would fly on her own. It's been 24 hours and Molly is eating well. At home she ate about 375 ml a day. They want her to eat 560 ml a day. In the last 24 hours she ate 475. HUGE improvement after just one day. So we're working with speech therapy (yes, they actually work on feeding issues with babies) to help her get more. Working through some reflux issues and today trying to add some rice cereal to the bottle. Apparently adding some rice cereal allows their stomach to empty quicker. They have labelled Molly "quick to satiety" meaning she eats and once she feels the food in her stomach, she's done eating. We're hoping the rice cereal empties her stomach a bit more so she has more appetite. Thank freaking god we have specialists helping us.
Otherwise Marie and Hannah are back! And so is Brian!
So once Molly perfects to F word, we'll be D worded. If she just doesn't get there, a feeding tube it is. Whatever needs to happen to get us back home!
Wednesday, June 29, 2011
Monday, June 27, 2011
Wean, baby, wean.
It turns out, I am a medical conspiracy theorist. When Molly responds poorly to something I come up with about 8 different explanations for what could be going on. Then I systematically go about disproving each theory. It helps me deal with things, but I think it drives the nurses and docs a wee bit nutty.
Today my theory is that Molly hates her feeding tube. She randomly gags. When we feed, she's hungry but as soon as she goes for the bottle and starts to swallow she freaks out. Hates it. But she's still hungry. I think she's a bit of a prima donna about this, but it's annoying because we need the tube still as she recovers. So she's a horrible eater. I'm not sure how to resolve this. I guess we'll wait until she's more stable and then pull the tube and see if it makes a difference.
There are just so many other small things that we have to worry about on a daily basis that it's tiring to write about. Potassium, heparin, sodium, calcium, levels, levels, levels of everything! And her pacer is pulling shenanigans that I still don't understand (but according to cardiology is fine).
They have begun the milrinone wean so hopefully this is the beginning of the end for it and her central line (the iv access). The longer she has in her central line the higher the risk of infection. So everyone wants it out as soon as possible.
Today my theory is that Molly hates her feeding tube. She randomly gags. When we feed, she's hungry but as soon as she goes for the bottle and starts to swallow she freaks out. Hates it. But she's still hungry. I think she's a bit of a prima donna about this, but it's annoying because we need the tube still as she recovers. So she's a horrible eater. I'm not sure how to resolve this. I guess we'll wait until she's more stable and then pull the tube and see if it makes a difference.
There are just so many other small things that we have to worry about on a daily basis that it's tiring to write about. Potassium, heparin, sodium, calcium, levels, levels, levels of everything! And her pacer is pulling shenanigans that I still don't understand (but according to cardiology is fine).
They have begun the milrinone wean so hopefully this is the beginning of the end for it and her central line (the iv access). The longer she has in her central line the higher the risk of infection. So everyone wants it out as soon as possible.
Saturday, June 25, 2011
yin and yang
Had a long chat with cardiology today about their plan to get Molly out of here. It involves slow moves and lots of patience—two things I'm really bad at.
Yesterday was a good day for Molly. Towards the end she even started eating better and we were hopeful for a good night. Ah hope. So cruel. Molly's blood pressure dropped, leading them to give her some fluids. Remember how she was super wet before? Well now she's super dry. The pendulum of medication has swung its ugly head again. Too many diuretics. I ran into one of our old nurses, Cailla, this morning and told her what happened. She said that I told her that would happen last week. Ha. But they didn't want to cut her off too soon and have Molly go back to being wet, which was a MUCH worse situation.
While it was a good day, her night was much worse. And poor Brian had night duty again, further proving that he always gets her on bad nights. She (and he) slept only a few hours. We're hoping that with more fluids working their magic inside her and getting her more sleep today that she will rebound. Fortunately our nurse today is helping us. Michelle's philosophy (and one she teaches her nursing students) is "Never wake a sleeping baby. Their temperature can wait."
So they are stepping down on her diuretics today and seeing how she tolerates it. If she does well, they will give her a test dose of enalipril tomorrow. If she tolerates the test doses, they will begin the wean from milrinone to enalipril. The steps forward are lovely. I'm getting tired of the steps back. I don't know how the docs can stand dealing with this crap all the time.
While talking to Dr Jayakumar today (cardiologist), I realized that I'm a rabbit in the turtleness of medicine. So I'm going to try to channel my inner yang as much as possible for the rest of this trip. Wish me luck.
Yesterday was a good day for Molly. Towards the end she even started eating better and we were hopeful for a good night. Ah hope. So cruel. Molly's blood pressure dropped, leading them to give her some fluids. Remember how she was super wet before? Well now she's super dry. The pendulum of medication has swung its ugly head again. Too many diuretics. I ran into one of our old nurses, Cailla, this morning and told her what happened. She said that I told her that would happen last week. Ha. But they didn't want to cut her off too soon and have Molly go back to being wet, which was a MUCH worse situation.
While it was a good day, her night was much worse. And poor Brian had night duty again, further proving that he always gets her on bad nights. She (and he) slept only a few hours. We're hoping that with more fluids working their magic inside her and getting her more sleep today that she will rebound. Fortunately our nurse today is helping us. Michelle's philosophy (and one she teaches her nursing students) is "Never wake a sleeping baby. Their temperature can wait."
So they are stepping down on her diuretics today and seeing how she tolerates it. If she does well, they will give her a test dose of enalipril tomorrow. If she tolerates the test doses, they will begin the wean from milrinone to enalipril. The steps forward are lovely. I'm getting tired of the steps back. I don't know how the docs can stand dealing with this crap all the time.
While talking to Dr Jayakumar today (cardiologist), I realized that I'm a rabbit in the turtleness of medicine. So I'm going to try to channel my inner yang as much as possible for the rest of this trip. Wish me luck.
Friday, June 24, 2011
Moving on up
Well, we caught another break yesterday. Cardiology did a follow-up echo of her heart function and they said it clearly looks better! It's still pretty bad but an improvement is a positive sign. And it's not only better than Friday's echo (day after surgery showed WORSE function), it's better than her echo BEFORE surgery as well. Dr Schneider said he just wanted to get her back to the function she was at before we got here, but she's already exceeded that! Also, her BNP (measure of heart failure...some take more stock in it than others) was 3200 when we came in, 15,000 after surgery and now is 2500. The numbers don't matter as much as the trend does. And she's trending better! Finally!
Brian and I are actually quite scared to even share this news, because whenever we feel happy about something this little girl throws us a loop. So let's just say yesterday was a good day and hopefully today and tomorrow will be a good day.
In the irony department, I walked outside of Molly's room to have a breakdown about how horrible everything was going. While I was crying in the hallway to Rebecca (she has amazing timing because the doors opened to the PICU next to me with her on the other side right as I was losing it. Bad for her, good for me), they came and did the echo and we got the good news. We've dealt with things turning for the worse in such a short amount of time, so I guess we were due for the opposite at some point.
So cardiology is "cautiously optimistic". Today they are adding back her enalipril to her daily medications to make sure she tolerates it fine. They are keeping her on her heavy diuretics for another 24 hours then will begin to wean her back to her home dose of lasix. And they are going to up her carvedilol. All these things shouldn't take much time. The time consuming one could be weaning her off the milrinone. My guess is they want to do it slow because that's how they work. HOW slow is yet to be answered as we're still waiting to talk to them today. This morning I would have said a few days, but at rounds this morning a fellow casually suggested that her improvement was because of the milrinone and not the new pacer. This made me nervous that that is what cardio thinks too and that they will wean her really slow (and of course it made me nervous that he could be right too and this is a false positive). We'll see what they say today... or Molly could just boff her central line again and force cardiology to pull the milrnone plug...she is so bossy with these docs.
Word is we're also moving to the floor today. This is good in that it means they consider Molly to not need intensive care. Bad in that we go back to sharing a room and sleeping on a recliner chair. We might get a reprieve if they don't have a room for us.
Brian and I are actually quite scared to even share this news, because whenever we feel happy about something this little girl throws us a loop. So let's just say yesterday was a good day and hopefully today and tomorrow will be a good day.
In the irony department, I walked outside of Molly's room to have a breakdown about how horrible everything was going. While I was crying in the hallway to Rebecca (she has amazing timing because the doors opened to the PICU next to me with her on the other side right as I was losing it. Bad for her, good for me), they came and did the echo and we got the good news. We've dealt with things turning for the worse in such a short amount of time, so I guess we were due for the opposite at some point.
So cardiology is "cautiously optimistic". Today they are adding back her enalipril to her daily medications to make sure she tolerates it fine. They are keeping her on her heavy diuretics for another 24 hours then will begin to wean her back to her home dose of lasix. And they are going to up her carvedilol. All these things shouldn't take much time. The time consuming one could be weaning her off the milrinone. My guess is they want to do it slow because that's how they work. HOW slow is yet to be answered as we're still waiting to talk to them today. This morning I would have said a few days, but at rounds this morning a fellow casually suggested that her improvement was because of the milrinone and not the new pacer. This made me nervous that that is what cardio thinks too and that they will wean her really slow (and of course it made me nervous that he could be right too and this is a false positive). We'll see what they say today... or Molly could just boff her central line again and force cardiology to pull the milrnone plug...she is so bossy with these docs.
Word is we're also moving to the floor today. This is good in that it means they consider Molly to not need intensive care. Bad in that we go back to sharing a room and sleeping on a recliner chair. We might get a reprieve if they don't have a room for us.
Wednesday, June 22, 2011
Revenge of the feeding tube
It hasn't even been a week here and my patience is already fried. It took me about 7 weeks last time to try my patient (truly). This time...5 days.
Molly got a lot worse because her fluid wasn't coming off as fast as they hoped. So her heart function is decreased even more, which is backing up her liver. We thought it was constipation at first, but after demanding a chest xray, we saw it was her liver. Turns out, an enlarged liver hurts. A lot. So Molly was not the happiest of campers. Meaning she was in pretty excrutiating pain at times. She stopped eating well. She screamed a scream I've never heard before prompting the next door neighbor family to dub her the "cat baby". All in all, you can't imagine how painful it is to watch until it's forced on you.
As I saw her getting worse and not better, I turned into what I call "bitch mom" on Monday. I had the nurse page the PICU attending and cardiology attending because I didn't feel like we knew what their plan was and why it wasn't happening fast enough. It was already three days of "gee her chest xray is still wet" and I was sick of it. So finally yesterday they threw the big de-fluiding guns at her and shock and surprise, she's lost a ton of fluid! They showed me the chest xrays before and pointed to her chest saying it was wet. I didn't understand what I was looking at until I saw today's xray. Wow, huge difference. Her liver is also smaller than half of the size it blew up to. So she's definitely feeling much better. Yesterday was her first smile since surgery courtesy of Minerva. And this morning was a 5 minute smile fest with Minerva. This cat is gold.
I dd make the mistake yesterday of allowing her to skip her nap because she was finally awake and playful and back to general Mollyness. But I forgot that general Mollyness also includes that she turns into a demon seed when she misses her naps. My bad. So she had a major MMD (Molly Meltdown). I also had a meltdown because it was hard for me to separate her misreableness from being over-tired from her misreableness from being here and still healing. So it sucks. Plus Brian had to go home yesterday for a 5-day class. Which sucks for both of us.
Fortunately the B-team arrived in the form of Hannah and mom Coffey. Today we basically are sitting around and whispering to each other because I'm Molly to sleep more so no more MMDs. It's lovely.
Other happiness is that Ann F got to visit and give me a much needed chai break. Shannon came with amazing, amazing food that she made fresh from the farm veggies. It's funny how you can easily not eat vegetables while in the hospital, so it was incredible and yummy mummy. Plus, you know, Shannon was a lovely visitor and poop-encourager (when we thought Molly was constipated). And Laura (Sam's mamma) came yesterday and brought much needed perspective when I was melting down. NICU mom's have a way of calming down other NICU (now PICU) moms. Dr Mike also made a few visits. As did Norma, everyone's favorite baby teacher.
I also finally ran into the first nurse that I hated. Fortunately we only had her for a day. She acted like Molly had 4 days to live or something. She would say things like, "Well a baby as sick as Molly..." and "Well maybe what's going on is just her heart failing more and not recovery from surgery." Today I ran into her and tried to be nice saying that I agreed to their putting a feeding tube in (more on that later). She responded with, "Yeah a lot of babies who are waiting for heart transplant have them." I wanted to punch her.
So feeding tube is back in. We fought it really hard, visibly shocking the nutritionist. It took us so long to get the docs to pull it out in the NICU that I just had flashbacks of being here for 2 more weeks because they don't trust she'll eat once they pull it out (shocker, she did). In the end she convinced me that they work completely differently from the NICU and that she only needs it short term while she is too much in pain and weak to eat her full feeds. The argument that got me was that it's stupid to ask a baby to heal if they are malnourished. Me and Brian looked at each other like, "fuck. they're right." After months of not having it, she definitely notices it more this time. She has these sad little gags. But hopefully it will get her back up to speed and out of here sooner.
So she's on an upward trend. The days (and nights) are draining for all of us. In many ways it feels like we're right back at the beginning with her on Milrinone iv and feeding tube. Which is depressing because it took so much time and energy to get her off them. But here we are.
Molly got a lot worse because her fluid wasn't coming off as fast as they hoped. So her heart function is decreased even more, which is backing up her liver. We thought it was constipation at first, but after demanding a chest xray, we saw it was her liver. Turns out, an enlarged liver hurts. A lot. So Molly was not the happiest of campers. Meaning she was in pretty excrutiating pain at times. She stopped eating well. She screamed a scream I've never heard before prompting the next door neighbor family to dub her the "cat baby". All in all, you can't imagine how painful it is to watch until it's forced on you.
As I saw her getting worse and not better, I turned into what I call "bitch mom" on Monday. I had the nurse page the PICU attending and cardiology attending because I didn't feel like we knew what their plan was and why it wasn't happening fast enough. It was already three days of "gee her chest xray is still wet" and I was sick of it. So finally yesterday they threw the big de-fluiding guns at her and shock and surprise, she's lost a ton of fluid! They showed me the chest xrays before and pointed to her chest saying it was wet. I didn't understand what I was looking at until I saw today's xray. Wow, huge difference. Her liver is also smaller than half of the size it blew up to. So she's definitely feeling much better. Yesterday was her first smile since surgery courtesy of Minerva. And this morning was a 5 minute smile fest with Minerva. This cat is gold.
I dd make the mistake yesterday of allowing her to skip her nap because she was finally awake and playful and back to general Mollyness. But I forgot that general Mollyness also includes that she turns into a demon seed when she misses her naps. My bad. So she had a major MMD (Molly Meltdown). I also had a meltdown because it was hard for me to separate her misreableness from being over-tired from her misreableness from being here and still healing. So it sucks. Plus Brian had to go home yesterday for a 5-day class. Which sucks for both of us.
Fortunately the B-team arrived in the form of Hannah and mom Coffey. Today we basically are sitting around and whispering to each other because I'm Molly to sleep more so no more MMDs. It's lovely.
Other happiness is that Ann F got to visit and give me a much needed chai break. Shannon came with amazing, amazing food that she made fresh from the farm veggies. It's funny how you can easily not eat vegetables while in the hospital, so it was incredible and yummy mummy. Plus, you know, Shannon was a lovely visitor and poop-encourager (when we thought Molly was constipated). And Laura (Sam's mamma) came yesterday and brought much needed perspective when I was melting down. NICU mom's have a way of calming down other NICU (now PICU) moms. Dr Mike also made a few visits. As did Norma, everyone's favorite baby teacher.
I also finally ran into the first nurse that I hated. Fortunately we only had her for a day. She acted like Molly had 4 days to live or something. She would say things like, "Well a baby as sick as Molly..." and "Well maybe what's going on is just her heart failing more and not recovery from surgery." Today I ran into her and tried to be nice saying that I agreed to their putting a feeding tube in (more on that later). She responded with, "Yeah a lot of babies who are waiting for heart transplant have them." I wanted to punch her.
So feeding tube is back in. We fought it really hard, visibly shocking the nutritionist. It took us so long to get the docs to pull it out in the NICU that I just had flashbacks of being here for 2 more weeks because they don't trust she'll eat once they pull it out (shocker, she did). In the end she convinced me that they work completely differently from the NICU and that she only needs it short term while she is too much in pain and weak to eat her full feeds. The argument that got me was that it's stupid to ask a baby to heal if they are malnourished. Me and Brian looked at each other like, "fuck. they're right." After months of not having it, she definitely notices it more this time. She has these sad little gags. But hopefully it will get her back up to speed and out of here sooner.
So she's on an upward trend. The days (and nights) are draining for all of us. In many ways it feels like we're right back at the beginning with her on Milrinone iv and feeding tube. Which is depressing because it took so much time and energy to get her off them. But here we are.
Sunday, June 19, 2011
The dance
While we are more understanding of the ups and downs of recovery, it still sucks. It is just a delicate balance of medications that is constantly changing and evolving based on her reactions to them. Anesthesia causes nausea, which made her not be able to keep down food at first, which means they give her morphine instead of an oral pain med, which causes nausea. So they give her a stomach calming agent so she can get down food, which causes constipation, which causes her to not be able to keep down food. And oh yeah, the oral pain meds they are now able to give her (basically percoset)? They make her nauseous too. But she needs something stronger than tylenol because of her surgery incisions. Round two: her surgery causes her to put on excess fluid on her body, which causes her to get fluid in her lungs, which makes her panic that she is not able to breathe well. Which makes her throw up. So they give her lasix to shed the fluid (which has been starting to work). Which, wait for it...can make her nauseous. What else? Her blood was a bit acidotic so they gave her saline with sodium bicarbonate in it. Now she has too much sodium bicarbonate. And the doctors are concerned that she is not eating or sleeping well. Anyone have any thoughts on why that may be?
Brian earned his dad of the year stripes this trip because every time he stays over at the hospital with her (we alternate nights), she has a horrible night. The first night was getting extabated and just general waking up from surgery crappiness. Last night was can't eat, can't poop, can't sleep freakouts every hour or so.
With all this said, we do think she's getting there. Slow overall forward progress each day. The surgeon came today to check her wound and the stitches are holding strong. Hallelujah! Now we just need to practice our dance moves a bit more...
Brian earned his dad of the year stripes this trip because every time he stays over at the hospital with her (we alternate nights), she has a horrible night. The first night was getting extabated and just general waking up from surgery crappiness. Last night was can't eat, can't poop, can't sleep freakouts every hour or so.
With all this said, we do think she's getting there. Slow overall forward progress each day. The surgeon came today to check her wound and the stitches are holding strong. Hallelujah! Now we just need to practice our dance moves a bit more...
Saturday, June 18, 2011
Breathing is underrated
Molly had another rough night last night, but it was less rough than the night before so we'll take it. She still has the normal post-op pain, but she's also very "wet" and it manifests itself as just a bunch of gunk in her lungs. It affects her breathing and we think makes her the most uncomfortable. The nurses suck it out of her through her nose and mouth, which, well, sucks.
They are starting her on Milrinone again for a few days while we work on getting her to be able to keep down food more consistently. Milrnone is the iv med to help her heart squeeze. They are also putting her back on her lasix, which keeps her more dry. They were supposed to restart it yesterday, but she threw up the dose and for some reason they didn't try again. That's frustrating because I don't think she'd be as wet (and uncomfortable from it) now if they had started giving it to her iv when cardiology wanted them to. But they are starting today, so hopefully we see improvement soon...
They are starting her on Milrinone again for a few days while we work on getting her to be able to keep down food more consistently. Milrnone is the iv med to help her heart squeeze. They are also putting her back on her lasix, which keeps her more dry. They were supposed to restart it yesterday, but she threw up the dose and for some reason they didn't try again. That's frustrating because I don't think she'd be as wet (and uncomfortable from it) now if they had started giving it to her iv when cardiology wanted them to. But they are starting today, so hopefully we see improvement soon...
Subscribe to:
Posts (Atom)