Our son Magnus was born November 19, 2009 with a serious congenital heart defect, HLHS. I set up this blog to keep our family and friends updated on his condition, and to connect with other families dealing with HLHS.
(Above: exiting the hospital after 19 days, Below: welcome home sign by our neighbor Audrey)
We are home! We got home around 1 p.m. on Friday, and there was so much to do! Presents for Magnus to open, unpacking and going through mail for me (I hadn't been home in 20 days!), a new medication regimen to figure out. After surgery, you're usually on some extra meds for a while. This time it wasn't too bad, although we did switch from being on 2x a day meds to 3x a day meds. Hopefully, as he recovers, we'll be able to drop some of the extra meds and will be on fewer than before surgery.
I can't believe how exhausted I've felt since we got home. I guess I was having an extended adrenaline rush the whole time we were in the hospital, and now that's over. It helps that my back and neck are starting to feel normal again after a couple of nights of sleeping in an actual bed!
Magnus is happy to be home, but the hospital has taken its toll on him, too. He's quite clingy and gets anxious if I am too far away from him. He's been waking up several times each night. He also has lost a lot of physical strength from all that bedrest. Ordinarily, when kids have a Fontan, they like to get them up and moving not too long after surgery, but in his case, he was tethered to the CPAP and nitric oxide machines for a couple of weeks, so he really spent a long time lying down. I knew that when he came home that his sternum would still be healing, but I was surprised by how weak and stiff his legs are, too. Going up and down stairs is difficult, and he's having difficulty with transitioning between sitting and standing. He needs help to get up after sitting on the floor or to sit on his potty chair. I'm sure that stuff will come back to him pretty quickly, but it's just a shock to see how quickly those muscles went!
Another challenge has been eating. The Fontan is notorious for the "Fontan gut" most kids experience. The surgery reroutes blood flow through the entire lower part of the body, including the gut and the liver, and as a result, bloating and vomiting are common in the weeks after the surgery. We've had some issues with puking, gas, and constipation, and Magnus is still very skittish about eating anything. Luckily, he does seem to be tolerating chocolate milk, supplemented by a few cheese puffs here and there
Being home has also finally given me the opportunity to start to reflect on the big picture. This surgery was a gamble. Magnus was considered a high risk Fontan due to his elevated pulmonary pressures, and there were many people who suggested that maybe he shouldn't have the surgery due to the risks for his particular anatomy. Although he did have complications (the paralyzed diaphragm and collapsed right lung), he actually had a relatively easy time with fluid buildup and seems to be doing pretty well with the Fontan anatomy so far. It was almost 5 years ago that we received Magnus's diagnosis and were told that a series of three surgeries would be our best option for him to survive. Now we are done with those surgeries! There will likely be more in the future, but hopefully not for a long, long time.
Good news: Magnus's INR this morning was 1.6!
Bad news: Although the nurse practitioner told us yesterday that an INR of 1.6 would be sufficient for discharge, today we have a new NP, who says that the old NP's notes say that we have to be 1.7–1.8 to be discharged!
The new NP is currently following up with the surgeons.
We've heard a lot of that today. And yes, we are still here. Magnus's INR this morning was 1.4. The good news is that the surgeons have backed off in their requirement of 2.0 and said he needs to be 1.6 to go home. We were 1.2 yesterday, so hopefully 1.6 tomorrow.
Magnus did not sleep well last night. We have a new roommate, and he has a very large family who like to visit. As a result, Magnus was pretty grumpy all morning although he did end up taking a nap in the afternoon. Iggy was also able to come down for most of the day, and in the evening we had a visit from our friends Katrin and Finn.
Overall, though, we are both pretty sick of the hospital and can't wait to be out of here!
Surgery says we can't leave the hospital until Magnus's INR is above 2. Yesterday it was 1.1, today it was 1.2. We could potentially get out of here as early as tomorrow, but it also might take a while.
The team just did their rounds, and it is looking more likely that we will spend one more day here. As I suspected, his anticoagulant levels did go up, but not as quickly as they would have liked. In addition, he scratched the scab off his chest incision and now the surgeons have to come look at it, and we're looking at possible antibiotics, which interfere with the anticoagulant. So, they're saying it's not impossible we'll get out today, but most likely tomorrow. Of course, it might not actually be tomorrow, either. This is why I never like to say for sure that we're leaving the hospital until it actually happens!
Well, if all goes according to plan, this will be the last $%#&^ night I sleep in the hospital for a long, long time! Magnus was weaned off oxygen this morning, which meant that it was a lot easier for us to be up and about. We went to hospital preschool in the morning, and the playroom in both the afternoon and evening. Magnus's legs are still getting accustomed to being put back to work, but he showed definite improvement over the course of the day.
At this point, I think the only lingering concern is that his INR levels (a measure of blood clotting) are on the low side...he has to take Coumadin to prevent post-surgery blood clots and they want his blood to be very thin. He will have to have one more blood draw tomorrow and hopefully that will start trending in the right direction. He's still going to have to have blood draws as an outpatient to get to his target levels, though.
Another thing that happened today is that another family we know from San Francisco is also here today because their little guy Seamus is having a heart cath today and is scheduled for surgery in July. I'm hoping they get good news from today's cath.
Today was our first full day in the step-down unit. I had a GREAT night of sleep in the room with Magnus. When we were in the ICU, I was sleeping in a room that was also a parent lounge, and people didn't clear out until 10 or 11 at night, and then continued to come in and make noise, and then I wanted to be back in Magnus's room before he woke up, so I was only really getting 5 or 6 hours of sleep a night. Last night, I went to sleep before 8 p.m. and didn't really wake up until a phlebotomist came to draw Magnus's blood at 6 a.m. (Blood draws are always first thing in the morning...what a sadistic way to wake up!)
Given yesterday's failed blood draw attempts, I had spoken with our nurse practitioner about having a vascular access specialist come back to draw the blood, but I guess somehow the message had not been passed on. Turns out the vascular access specialists are not here on the weekends (??? I understand that people like to have weekends off, but it seems like that would be something you would want to have 24-7 in a children's hospital). BUT, they managed to find a nurse who is good at finding veins, and he promised us that he would not make an attempt unless he felt very confident that he would be successful, and successful he was, on the first try!
Magnus also had a chest X-ray and an echocardiogram this morning, and the team did their rounds in here at around 10 a.m. The attending was not worried about his oxygen saturations, and said that he could be weaned off oxygen today. Right now he is on half a liter of oxygen (basically the lowest setting there is) and doing fine. They said that they want to keep him for a day after he's weaned off of oxygen, so barring any unforeseen events, I guess that means Tuesday. At least I hope so, because my mom has already booked her plane ticket home!
Magnus spent about 3 hours out of bed today, including almost 2 hours playing in the playroom. He's still very weak and unsteady when he tries to walk, but I suppose that is to be expected after having his heart stopped for 2 hours, 2 surgeries, and almost 2 weeks in bed!
Today has been a long and eventful day! It started with a 6 a.m. attempted blood draw. Followed by an 8 a.m. attempted blood draw. All in all, there were 4 sticks and lots of rooting around with the needles, and all to no avail. They will try again tomorrow :(
From there, things took a much more positive turn. Magnus got his chest tubes out, and then at morning rounds, the doctors decided to switch him off his last IV medication and said that he was ready to go up to the step-down unit! Woo-hoo!
Shortly after that, we had a visit from Magnus's school friend Vida and her parents. Magnus was not feeling too happy after all those pokes, so I was a little uncertain how he'd react to having a visit from a peer, but they greatly enjoyed playing with Magnus's new Peppa Pig figures together (speaking of which, these arrived from amazon.com without any note in the package...if you sent them to us, please let me know so I can thank you!)
Towards the end of Vida's visit, we got permission to go on a ride in a little car they have here in the hospital. The only other times Magnus had left his room since arriving here on June 9th were to go to the cath lab for his fluoroscopy study and then to have his plication surgery, and both those times they just wheeled him in his bed, so it wasn't much fun. We took a lap around the floor together.
After that, I left the hospital to take a shower, change clothes, and grab lunch, and by the time I got back, Magnus had been transferred out of the ICU. The downside of being out of the ICU is that the nurse to patient ratio is much lower so it can take a while to get help, but the upside is that we have a lot more freedom: we can eat and drink in the room! I can sleep in his room! We can have as many visitors as we want! And of course we are one step closer to home. The nurse practitioner came in to examine him and the first question I asked was what we needed to do to get out of the hospital. She said that the main concern was his oxygen levels. He's still on 2 liters of supplemental oxygen, and they want to wean him off that, obviously. Also, his oxygen levels when she came in to talk to us were in the low-to-mid eighties, and she said that she wants them in the high eighties/low nineties, which is actually what they are right at this moment, but they kind of trend up and down.
After we saw the N.P., we were given leave to go to the playroom for the first time! Magnus hadn't walked since before his first surgery (the physical therapy team had him standing, but not really walking, yesterday) but my mom and I figured that a trip to the playroom was a powerful motivator to get his legs going. We used the little car to get there, but made him take a few steps to get into the car, and then once we got to the playroom, he walked around a little bit again, and even stood to play at a rice table for a few minutes (he did then get tired and said he had to sit down). But overall lots of progress today!
We are at the point in our hospital stay where I have no idea how long we have been here. But Magnus had a good day with lots of progress. He got one of his lines out (actually, he got 2 lines out, but 1 put in, so it was a net loss of one) and now he just has one peripheral IV. He's now on almost all oral meds. He also made huge progress in being weaned off his oxygen; since yesterday, he's gone down from a flow of 15 liters to 10 to 8 to 4 and now he's on just 2 liters. Not being on high-flow oxygen means that he can be somewhat mobile and actually get out of the room, so we're hoping to do that tomorrow.
Magnus's legs are pretty weak after almost 2 weeks in bed, but he did work on standing with the physical therapists today. Hopefully some walking tomorrow.
He does still have 2 chest tubes, but there's been a lot of talk about pulling them out. I think at this point, that's the only thing keeping him in the intensive care unit...we're hoping to be transferred to transitional care very soon!
Today has been such a busy day, I haven't had time to update! Magnus was weaned off his nitric oxide gas last night, and then this morning they weaned down his oxygen (he's still on high-flow oxygen, but now 10 liters rather than 15). He also got 2 out of his 4 chest tubes today AND he got the go-ahead to start eating and drinking a bit. We started with chocolate pudding, because he likes it and I figured it was relatively easy to digest and hard to aspirate.
Now that he's able to eat, the hope is that he can be weaned off TPN (IV nutrients) and then he won't need the line in his neck anymore.
After the doctors did their rounds we had a visit from Magnus's beloved Teacher Beth from his preschool as well as her boyfriend, who helped make Magnus an awesome card with some notes from many of his school friends. They also brought a big poster his classmates made, which we now have hanging on the wall (sorry about the glitter, housekeeping staff!). Magnus was so excited to see them! After they left, the physical therapy team came and helped Magnus get out of bed, where he did some standing for the first time after surgery, and then he sat in a chair for about 3 hours! While he was doing his chair time, we had a second set of visitors, Josh and his mom, Allison. They were here for a clinic appointment in the morning, and then they kindly brought me and my mom lunch afterwards. They also brought Magnus a cool Brobee toy.
I think my mom got some good pictures today of Magnus eating pudding, etc., but I have been too busy to take any! So here's a photo from yesterday of Magnus sitting in a chair painting, and Grandma maintaining her social media presence.
So far, day 9 has been pretty quiet. Magnus's nurse last night gave him a dose of Ativan, and I guess it's just taking a long time to wear off because he's mostly been asleep (the attending told me that his liver function is probably still abnormal post-surgery, and therefore it's not unexpected that he would metabolize the Ativan very slowly).
His chest X-ray did look better this morning (though still not perfect) and after heavy doses of diuretics, they do not see any more fluid on that bad right side of his. They're weaning him off his inhaled medication and increasing his tube feeds. The next step after this will be to start weaning down his oxygen flow, and then he'll be able to eat and drink again! That's probably a couple more days off, though.
I had hoped that today would be a day of great leaps and bounds, but early this morning we got the news that his chest X-ray was looking a little worse again (his lung was looking a little more collapsed). They discussed putting him back on the CPAP machine, but then at the last minute decided to hold off and instead to focus on trying to get him upright as much as possible and out of bed.
Later that morning, we had a visit from the parents of one of Magnus's school friends. They brought us some delicious lunch, which was very exciting!
After they left, it was time to work on getting up and about. Yesterday, with the help of the physical therapy team, he was able to sit in a chair for about 10 minutes before getting too tired. Today, he sat in the chair for 45 minutes! They did another X-ray this afternoon, and his lung was looking about the same or maybe a little better, so we are still off the CPAP for now.
Magnus and I were both a little tired today. He was awake all day yesterday, and we were hoping he would sleep well overnight, but the nurses still need to mess with him a lot, so he went to bed late, slept fitfully, and then woke up early. Parents aren't allowed to sleep at the bedside in the ICU, but they do have sleeping facilities for parents in and around the ward. From Tuesday through Saturday night, I had a private sleep room, which was really great, but then it was determined that another family needed it more, so I've been demoted to sleeping in the parent lounge, where there are 4 couches. Sunday night wasn't bad--it ended up that there was only one other person sleeping in there that night, but last night all the beds were filled, one of them by a REALLY loud snorer (Iggy is a loud snorer...this guy put Iggy to shame), plus his phone kept ringing and it didn't wake him up. Here's hoping he's not my roommate again tonight! (As an aside, I finished watching the new season of "Orange is the New Black" this week, and it is a little bit eerie how much being in the hospital is like being in a minimum security prison...the lack of privacy, bunking with a bunch of strangers, the lack of control over most everything...)
Iggy is also headed back to San Francisco today, though he'll still be coming down to visit. Luckily, the cavalry (a.k.a. Grandma Ruth) is on its way as we speak!
Today was a great day! Magnus was awake all day and tolerated his
oxygen settings being turned down. The physical therapy team managed to
get him out of bed and sitting in a chair on his own for a while (this
took a team of 3 people just because of all of his lines and tubes and
stuff). Right now, the thing that's keeping him really tethered to the
bed is that he's got nitric oxide gas mixed with his oxygen, and the
nitric oxide isn't portable. However, they're in the process of weaning
him off that and onto an oral medication that does the same thing...as
soon as that is complete, he'll be able to go for a ride in a wheelchair
or wagon and maybe even start trying to walk. His nurse today also
commented that his chest tubes aren't draining very much any
more...hopefully that means we can take them out pretty soon, too, which
will be a huge step.
I think the only negative thing that
happened today was that now Magnus doesn't have to expend all his
energy on just breathing and it has given him the opportunity to reflect
on his situation. Today he looked around and asked me "how are we going
to fit this in the car?" "You mean your toys? They'll fit in the car
no problem." "No, how are we going to fit this hospital bed in the car?"
I guess he thought that he was going to be in the hospital bed forever.
Then later, when Iggy and I were leaving the room so the nurses could
do their shift change, he got upset because he thought we were going
home and leaving him at the hospital. I think he got confused because
his day nurse had mentioned that she was going home.
Anyway, those incidents aside, it was a great day and Magnus was pretty much his usual self!
I don't want to jinx anything, but so far Magnus is having his best day yet. After I posted last night, he started draining a lot of blood from his chest tubes, having a fast heart rate and was having trouble maintaining his oxygen saturations. It was worrisome for a few hours, but it turned out that giving him some more blood fixed everything nicely.
Magnus has been very awake and active today. He woke up very grumpy. He's still on high-flow oxygen, so he can't drink water because of the aspiration risk, but he can suck from a little sponge. He really wants his water bottle, though. As the day progressed, though, his mood improved and he felt well enough to sit up in the bed with his feet dangling over the side. We just had a visit from the physical therapist, and I think she's going to try to get him sitting in a chair in a bit.
Magnus did end up getting one of his arterial lines out today because it went bad. Our nurse was trying to fix it this morning when Magnus was really grumpy, and she said to him "let me play with this for a sec" as she fiddled with it, and Magnus said "NO! Because it's NOT A TOY!"
Hoping for a day that continues to be uneventful, and then hopefully pulling back on a few things tomorrow.
It's been a quiet afternoon since Magnus came back from surgery. He was already awake when we came in to see him, although he did get a dose of morphine soon after, and then took a nap. He seems stronger every day. Right now he's got some low oxygen saturations for unknown reasons, but other than that, things have been quiet.
They took out one of his lines when he was down in the OR, and I'm hopeful they'll be able to take out at least one more tomorrow. They also put in one more chest tube down there (he now has a total of four). I'm hoping that maybe some of those can go soon, too. Chest tubes are notoriously very painful, although he has not complained about them.
After the anesthesia team dropped him back off in the ICU, our nurse said to us "I think [anesthesia doc] really liked him. She gave him some water because she was worried about how dry his mouth was. She doesn't do that for everybody." Indeed, when she had met with us outside, she commented on how special Magnus was, and described him as having a "Zen-like quality." People keep trying to give us credit for his mental toughness, but really he deserves all the credit.
At this point, Magnus is on very few medications: a diuretic (the same one he has taken at home all his life, although IV rather than oral), tylenol, an occasional dose of morphine, and a blood thinner. To put that in perspective, when he came out of his first surgery, he had 10 IV pumps at his bedside, plus several drips!
Here's a photo of him this afternoon looking not so happy, but very much like his ordinary self. I think he is definitely ready for some visitors, though probably only adults at this point, as he is still bedridden.
After a lot of waiting (especially if you count all day yesterday) Magnus is in surgery. He went in at 11 a.m. and the anesthesiologist told us it would take about an hour an a half, but it always takes longer than they say it will. We're hanging out in the waiting room for him to come back.
Yesterday was a pretty decent, quiet day. Magnus is still not very happy most of the time, but is awake and alert most of the time and cooperative with the nurses, respiratory therapists, and all the other people messing with him. He also pooped yesterday, for the first time since his surgery on Monday. Not ordinarily blog-worthy, but there had been some discussion about his lack of "bowel sounds." Apparently, his GI tract is, in fact, working!
Update: our nurse today just walked by and said they had called her 15 minutes ago to say that he would be up "within an hour." Though I would not hold them to that...
Update 2: We just saw them bring him back to the room, but they need a few minutes to get everything settled before we can go back. The surgeon stopped by, he said everything went fine and they were able to reopen his lung as well as plicate. They already extubated him downstairs.
Change of plans: our surgery has been postponed until TOMORROW morning due to a heart-lung transplant case that came up. Obviously, that takes priority over our case. Magnus is sleeping right now, but I hope that today will be another pretty good day...maybe even a good day for some visitors. I should mention, though, that Magnus is still wearing the CPAP mask and has chest tubes and lots of lines attached to him. It might be disturbing for some people to see him in that condition, and I totally understand that. If you're up for it, though, send me or Iggy a text.
We'll be thinking good thoughts for the transplant case and for the donor family.
Despite finding out that Magnus needs another surgery, yesterday was a pretty good day. We had a visit from our friend Mo in the morning, and she brought much-appreciated non-hospital food. In the afternoon, Magnus seemed to be starting to feel better and better, and in the early evening, I even managed to get a smile out of him! I was happy because we'd had the same nurse, Emily, for 3 days in a row, and on her last day with us, she finally got to see his personality!
We are scheduled for surgery at 2 p.m., but everyone thinks that we might go back sooner because they think the first case will be short. Of course, surgery does not always go as planned, so I'll believe it when I see it. Recovery from this should (knock on wood) be much faster than from the first surgery. They should (knock on wood again) be able to suction out some of the excess fluid on his right side that's been giving us so many problems in addition to moving the diaphragm out of the way. He will be intubated for the surgery, but they said that he should (there's that word again) be able to be weaned off it immediately. His heart function is fine (though still recovering from being on bypass for 2 hours during his surgery on Monday), so once we have the lung situation under control I hope that things will move quickly.
Well, the doctors decided that even though the imaging study was not entirely clear, they are very confident that Magnus's diaphragm needs to be plicated, and he is scheduled for surgery at 2 p.m. tomorrow. They will also be able to remove any pockets of fluid they find in there. Obviously, a second surgery is not great, but I'm hopeful that this will accelerate our recovery.
Magnus had an uneventful night. He's almost completely off his sedation now, so he was awake for most of the night (thank God Nick Jr. shows "Pocoyo" at 2 a.m...for the preschool insomniac set?). His right lung is apparently looking and sounding a bit better. This morning they took him back to the cath lab to do a quick imaging study to confirm the diagnosis of paralyzed diaphragm...but the results were indeterminate because they couldn't get a good picture due to the fluid around his lung. So, they are going to continue with high doses of diuretics over the weekend and try again on Monday. I'm OK with this, because I'm not crazy about the idea of plicating unless it's absolutely necessary. Hopefully things clear up by Monday and it gives us a few more days' reprieve to possibly get his diaphragm going again.
Well, today was hard in a lot of ways, but we are making progress. The top photo was taken 2 days ago right after he was extubated (note the purple fingers because his circulation wasn't too good; it is much better now) and the bottom one was taken today. We are in a much better place now than we were then. And I have really been so impressed by all of the staff here. The attending cardiologist who has been on during the day while we've been here is particularly great in that she is very focused on Magnus's comfort and mental state as well as his medical progress. It would have been very easy for her to say "he doesn't like the CPAP mask? Too bad, he's got a collapsed lung." Instead, she has allowed him to take breaks from wearing it and to allow him to have water and popsicles. On top of this, she is also super glamorous...have you ever seen anyone who works in a hospital who wears 3-inch heels to work? Well, now I have. And yes, she is able to sprint in them when there's a code on the ward (as I unfortunately saw tonight). Anyway, that's not the point. The point is that I feel very confident in the team here and I appreciate the fact that they are very receptive to any suggestions we have and actively encourage us to participate in rounds and other discussions. Oh, and our nurses have been awesome, too, but none of them have worn heels.
Magnus had a mostly good day, except that his pesky right lung "haziness" on the X-ray was not getting better. They did follow through on their plan of reducing his sedation, and he was able to sit in a chair on my lap for a few minutes (he still has soooo many lines, though, that it wasn't very comfortable for either of us, and he kept asking to be put back in bed. I liked it, though). Anyway, getting back to that lung, someone happened to notice that in several different x-rays, his right diaphragm was in exactly the same place...so they checked, and sure enough, his right diaphragm is clearly paralyzed. This is a common complication with open heart surgery (the phrenic nerve controlling the diaphragm can get nicked), and is usually temporary. However, because of his lung collapse and the fluid accumulation on that side they are trying to figure out what to do. One possibility is that they may do another (relatively minor) surgery to plicate the diaphragm (basically move it down and then sew it in place). Another possibility would be to watch and wait. The cardiologists are going to confer with the surgeon and then decide.
They couldn't find a good spot to place a new chest tube, so instead, they're going to remove his intracardiac lines (yay!), reduce his sedation, and try to get him up out of bed. This is good! They were saying that they were going to put the CPAP mask back on him, but not sure how that can be reconciled with this new plan.
Update: intracardiac lines are out. He had some bleeding (not unexpected) so he's getting a small blood transfusion right now.
The day shift docs just stopped by to confer and it looks like although Magnus's oxygen levels have held strong, the x-rays of his right lung continue to look "hazy," indicating that that lung is still partly collapsed. They did an ultrasound and were able to identify an area of fluid accumulation, so I think it's likely that he's going to get another chest tube this morning. Ordinarily I would be kind of bummed about this, because the chest tubes are painful and invasive, but after seeing how miraculous the other chest tube was yesterday, I'm optimistic that if they put the other tube in it will allow a big step in his recovery. Another step forward is that this morning, they stopped using his external pacemaker. They had been pacing him at a slightly higher rate than his heart wanted to have just to increase his blood pressure, which had been a little low. His blood pressure (which had been low) was great overnight, so they took him off his blood pressure medication overnight and now the pacemaker is off, too. These were the two suspects in his "abnormal heart rhythm" so I'm glad he's off them (there was also another opinion out there that "rapid fluid shifts" also could have been the culprit).
Magnus is still sedated, but is much more lucid than he has been. He's allowed to have sips of water again, so that is making him happy.
I'll report back after the doctors round later this a.m.
Things have been quiet since Magnus's little episode this morning! He's been doing well with just the cannula; the doctor had said that they would put him back on the CPAP machine overnight, but so far they haven't put it on him so maybe he got a reprieve by doing so well with just the cannula. He's also been upgraded to being allowed small sips of water and ice. If his morning bloodwork shows that his blood has sufficient clotting ability, they will take out his intracardiac lines, which will mean that he can be less sedated and maybe even start getting up.
Our heroic nurse from last night is back with us again, but she's having a much easier night tonight.
I will start by saying that things seem to be going really well right now, but after I last posted, they got worse before they got better.
I went back to the sleep room at around 3:30 a.m. because Magnus seemed stable and sleepy, and I was awoken by a knock on the door. "Are you Magnus's mom? There's an emergency at the bedside." I quickly gathered my stuff and walked around the corner. There were about 10 people in the room, another 10 outside it, and the crash cart was parked just outside. "What happened?" I asked the nurse. "Um, he had an irregular heart rate," she told me. They basically had everything under control at that point, but he had woken up, started thrashing around, and then his heart rate started going really fast, something that is called ventricular tachycardia. At first, his blood pressure stayed stable, but then it started dropping, meaning that his heart was no longer pumping effectively. Luckily, they were able to get his heart under control using his pacer wires and they didn't have to do chest compressions or shock him, though they had the pads ready in place to do that.
The doctor explained to me that there were a few possible reasons why this might have happened, some scary, and some less so. They did an echocardiogram shortly afterward that ruled out the scariest possibility of diminished heart function, his function looked great, and the prevailing opinion now is that it probably happened because when he was thrashing around one of his chest tubes might have brushed up against his heart, irritating it.
On top of all that, the x rays showed that his lungs were not making much progress despite the CPAP, so they were considering 2 possibilities: 1. putting him back on the ventilator and 2. putting in another chest tube to drain fluid from his chest cavity. He already has 2 chest tubes that they put in during the surgery, but due to his previous surgeries he had some "adhesions," basically, scar tissue had caused what is normally one big open chest cavity in a healthy person to form a series of smaller "rooms." So, some of the fluid in his chest did not have access to the tubes in place. After phone consultation with the surgeon (at 5:30 a.m.), they decided to place a third chest tube. Due to his "feistiness," which has been remarked upon by numerous hospital staff members as well as the mom in the room adjacent to ours :) , they heavily sedated him AND restrained his arms during the procedure. I went to breakfast while they placed the tube, and by the time they let me back in, 45 minutes later, the new tube had drained more than 100 ml of fluid and his oxygen saturations had jumped 10 points and have been sitting in the 90s since then (they were in the 80s pretty much all day yesterday). They just did another chest X-Ray and I haven't heard the results yet, but I'm optimistic that things will look a lot better and maybe we can ditch the CPAP mask today. Magnus will be MUCH happier after that.
So, HOPEFULLY, this is the beginning of the turnaround. The attending told me that when he spoke to the surgeon, he had complete faith in the surgery and didn't think there was any possibility that they would need to undo it. We're hoping for a quiet day with no more surprises.
A few people have inquired about visiting. Right now, Magnus is fairly heavily sedated, and when he wakes up he is grumpy. Very grumpy. I'm not sure how much benefit he would get from visitors right now, though his parents would be happy to see you. I'm very hopeful that in the next couple of days he'll be a lot less miserable, and thus less sedated, and more able to properly receive visitors.
Addendum: the heart rhythm specialists were just here and they don't buy the chest tube explanation for his episode. They think it is more likely one of the medications he is on or possibly a reaction of his heart to being on the pacemaker. We'll see if the docs make any changes based on this opinion. Also, they said they thought he was actually in supraventricular tachycardia rather than ventricular tachycardia, which is not QUITE as bad, although still bad.
Addendum 2: at rounds this morning they decided to try taking off the CPAP machine and replacing it with a high-flow cannula. They still don't want him to drink due to the aspiration risk, but now he can suck water from a little sponge. They stressed to us, though, that they still don't totally know what is going on with his lungs and expect that he will have to go back on the CPAP machine. So far, though, his oxygen levels are still looking good!
Tonight we actually got a sleep room inside the ICU (that means a bed with a sheet on it, but no pillow. Apparently pillows are impossible to come by in this hospital) so I went there to take a "nap" and ended up sleeping for about 6 hours. When I came back to Magnus's room, he was unhappy and pretty disoriented (actually he'd been disoriented for most of today; earlier he had started crying and pointing at a bunch of toys, saying "I want that chocolate milk!") The fellow who's in charge of him did not have very encouraging things to say about his collapsed lung. They are being aggressive with the respiratory therapy, but it seems that there hasn't been much change. They're talking about maybe having to sedate and re-intubate him. I'm not crazy about the idea of a step backwards like that, but it might be more comfortable for him to just be sedated since right now he is so unhappy. He is mostly dozing, but wakes up every 10 or 15 minutes demanding water or ice, which he can't have. But at least no major surprises tonight.
Post-op Day 1 has kind of sucked. I think that is usually the case. Magnus hates the CPAP machine and hates that he can't drink water. Actually, he hates pretty much everything right now, which is definitely not his normal state. They just increased his pain medication (he had been on only Tylenol) in hopes that he will be able to cough more deeply so his lungs can heal. I just hope he has a relatively peaceful night and then we make some progress tomorrow.
Magnus did pretty well for most of the morning after intubation, and got to sit up, watch TV, and eat ice chips and popsicles and drink water (unfortunately, ice cream is not going to be an option any time soon while he's still getting all that gunk out of his lungs) but there was growing concern about his right lung being partially collapsed. They decided that they would have to put him on a CPAP machine. This episode happened to coincide with me going back to our hotel to take a shower and change clothes, and apparently it was pretty ugly. They ended up having to sedate him again, although he woke up again just now and was not happy about the fact that he can't drink water anymore.
This morning at rounds, the doctors were saying that his progress is, as could be expected, a little slower than most and that he won't be getting any lines out or getting out of bed today. Hopefully tomorrow we'll make more progress.
I stayed up for a couple more hours after my last post. Magnus continued to have some "fluid issues" (fluid leaking out of his circulation; this is the most common complication after the Fontan) and less expectedly was having some heart rhythm issues where his atria and ventricles were contracting at the same time. This was causing his heart rate to go up high (in the 170s) and his blood pressure was too low (the fluid loss also contributed to this). Furthermore, he was showing no sign of waking up. During his surgery they had placed pacer wires going into his heart that they were able to hook up to an external pacemaker. Again, rhythm issues are extremely common after open heart surgery, and are usually temporary
By 11 p.m., Magnus was still showing no sign of waking so I decided to get some rest on my "sleep couch" upstairs in the hospital. I asked the nurse to call me if Magnus woke up, and slept with my phone next to my head, but then I woke up around 3:30 on my own and hadn't gotten a call. I couldn't fall back asleep, so I decided to go back down to the unit.
Magnus was still asleep! However, his heart rhythm issues had straightened themselves out. He has a slight fever and slightly elevated white blood cell count. Also, one of his IVs had infiltrated (leaked) so he had a big bruise on his right hand. Finally, around 5:30 a.m., he started to REALLY wake up. It was pretty unpleasant to see him gagging on the breathing tube and flailing around in pain. He was extubated around 6 a.m. His first raspy words were "I want some ice cream!" (He can't eat or drink anything until he's had the breathing tube out for a few hours. A few minutes later, he said "I want my M&Ms!" I had given him some M&M's the evening before he went in for surgery and he wasn't able to finish the bag, so I'd told him I'd save them for later. Obviously, he remembered!
Right now I'm having breakfast in the cafeteria while the nurses do their shift change, but I should probably get back up there soon.
We're waiting for Magnus to wake up enough that his breathing tube can be removed. He's taking his time. He's having some issues with low blood pressure and his fingers & toes are cold & purple although his overall oxygen saturations are in the 90s. Despite all that, the atmosphere in here is pretty calm. The doctors are visiting less frequently and that's a good thing.
We just spoke to the surgeon, he said they are done and that everything went fine, with no complications. The reason why it took so long is because he had a lot of calcification of his sternum from previous surgeries that they had to cut through. Right now we're waiting outside the ICU for him to be brought up from the OR and then it should be about 45 minutes while they get him transferred and then we can see him. The surgeon said that they will probably try to extubate him in a few hours, but who knows...as always, the 24-48 hours after surgery will be critical.
The anesthesiology team took Magnus back to the OR around 8:30. We had the same anesthesiologist we had for the cath last week. Apparently, they spend about 90 minutes just putting in lines and otherwise getting him prepped for surgery. The surgeon is going to come talk to us before he goes in there around 10. Everything went pretty smoothly this morning. We requested that Magnus have an IV placed rather than getting gas anesthesia. Most kids prefer the gas, but Magnus is super calm with IVs and they talked us into doing the gas for the cath last week and it freaked him out.
We were told the whole thing would take somewhere between 6 and 10 hours. I'm guessing it will probably be closer to the 10 hours because they have to remove his stent as well as doing the Fontan. His pressures were actually so low, they're going to see if they can get away with doing a non-fenestrated Fontan! (If you don't know what that means, don't worry about it).
We just got presented with a big stack of messages people have sent us here, so I'm going to go read those now.
There was a cancellation, so we got bumped up to first case tomorrow (yay, less fasting time!) We're actually in Palo Alto now, we arrive at the hospital at 7 a.m., and they'll get underway around 8:30.
I have written and erased the first sentence of this blog post 5 or 6 times now. I have so many thoughts flying around my head that it's hard to organize them into a coherent piece of writing!
Obviously, the news we got yesterday was really great. On a practical note, it is great, because I took the whole summer off of work (unpaid) to see Magnus through his Fontan recovery, and I didn't want to be stuck twiddling my thumbs all summer (or more likely dealing with the multitude of unfinished household tasks I've been putting off dealing with). It was also very stressful not knowing what our schedule would be like and not feeling like we could make any plans for anything. Now that we know, I can start planning!
But more importantly, Magnus's low pressures give us confidence that he truly is a good candidate for the Fontan. His previous pressures were right on the borderline, and his cardiologist had been pushing us to think long and hard about whether we really wanted to go for the Fontan. He's doing really well right now, but we knew that without a Fontan, over time, his heart function and ability to exercise would decline, and he would likely stop growing and would most likely require a heart transplant within 5-10 years. With the higher pressures, though, there was a substantial risk that the Fontan would not go well. There was a distinct possibility that the surgery would need to be reversed, that he would go into heart failure, or that he would otherwise come out of it weaker than he had gone into it. Those are all still possibilities with the lower pressures, but statistically we're in a much better situation now. The choice is now clear.
Many people have reached out to ask what they can do to help when Magnus goes in for his surgery. First and foremost, we love all those positive thoughts and prayers you've been sending our way. Please keep it up! It really means a lot to us and helps sustain us through the difficult times. If you are in the area and have time to drive to Palo Alto, we love visitors in the hospital (healthy ones, of course, please don't come if you are sick or have been around sick people). Being in the hospital is REALLY boring, and visitors are a wonderful distraction. I will be sure to keep the blog updated about when Magnus is feeling well enough to receive visitors. I anticipate that we will be in the hospital for 7-14 days and then he will be home from school for at least another month or so after that.
If you're not able to visit in person, you can also send a card to the hospital. The hospital has a service where you can send a free greeting card to any patient using an online form. Alternatively, you can send things through the U.S. Mail to the following address:
Patient [Magnus's full name here]
Lucile Packard Children's Hospital
725 Welch Road
Palo Alto, CA 94304
(Obviously, we will only be able to receive mail there while we are actually in the hospital, and again, I'm not certain what the exact time frame will be).
And although Magnus certainly doesn't need any more toys, he always loves to get new ones. His amazon.com wishlist can be found here (the default address for the wishlist is our home address).
They're finished and we got fantastic news! His pressures are actually LOWER than at his last cath in March so he is definitely going to have the surgery Monday! We were very nervous that his pressures would be too high because they took him off one of the medications he'd been taking. His pressures needed to be 15 or lower to be a good Fontan candidate. They were 15 at his last cath, and are 10-11 today!
We're at Stanford, the cath is underway (I dropped him off at 11:45 a.m.) and now we're in the waiting room. It's kind of weird being in a new hospital where we don't know all the ins and outs of how they do everything yet, but we did see one of Magnus's old nurses from UCSF in the cafeteria just now.
Here are some photos:
Midnight breakfast is now a family tradition. I even made bacon this time!
Playing with toys in the waiting room. He built an airplane.
Waiting to go back to the cath lab in his bear feet and one of the Spiderman hospital gowns Grandma Ruth made. As usual, he was giddy to be the center of attention. In fact, he was so giddy that one of the doctors thought he had already had his dose of Versed. Nope, that's just his personality!