Cath results

Doc guest post

Rowan had his cardiac catheterization today, where they thread a wire through a vein/artery in the leg and go up to the heart, take pictures with dye and measure pressures in the chambers and nearby blood vessels.

The last few days, his saturation levels (how much oxygen in his blood) have been trending down and the hope was that this was because the plastic tube that takes blood to his lungs was narrowing (a common problem that would be an easy fix). Of course, this tube was perfectly fine and had no issues.

What they did find: his heart function is good. However, the pressure in the arteries to his lungs is too high. It may or may not be too high for the second stage of his repair, and it may or may not respond to medicine that lowers the pressures. They tried giving him a medicine during the cath that would lower the pressures and they haven't "crunched the numbers" to see the response. There was one vein (vessel from lung back to heart) in which the pressure was high as well. This could be an incidental nothing that is not a big deal at all. Or it could be the start of a progressive problem in which the pressure in the other veins gets higher, too.

What this means: good question...there is a conference in the morning with the heart surgeons, cardiologists, pulmonologists, and some other -ists at which they will sit around, talk about him, look at his numbers, his history, and each other and determine what the next step is. If his pressures remain high, the next repair is not really doable. It relies on those pressures being low enough for the blood to flow that direction. It sounds like the main idea is that we will give him the medicines for lowering the arterial pressures to see if that helps or if the pressures go down on their own over time.

Best case: he gets a new med and his lung arteries open up and he gets better and is able to get the next stage of his repair. He eventually gets to come off the extra med and sails smoothly through life without a care in the world.

Worst case(s): The pressure in his lungs (arteries) is too high for repair and stays too high even with the medication. Or the pressure in his lung veins becomes a global problem instead of just one vein. Either one means...well, um...transplant. And that is a whole different ball game. We think of transplant as being an instant fix to everything, when in reality it presents its own set of problems - not all short term. Problems which we will worry about if that becomes our only option.

Moving forward:  We won't know anything for sure until...well, not tomorrow; but we might have a better idea of where we stand. Looks like we will never get a for sure from this one. So we are in the ICU again for right now. He is intubated and the plan is to turn his settings down overnight and see if he can get the tube out in the morning. This is very reasonable. He hates the tube and will get rid of it as soon as he can.

From Elle:

Those of you offering to help, here is what I can tell you - all we can do right now is wait. It is hard, and I promise we will call on you for your help whenever we can use it, but there is nothing we can do right now. I have a place to stay here and Matt is going back to work.  This is not something we expect to be a short fix and we want for one of us to be with Evelyn more than every few weeks.

I keep holding to this image in my head of Rowan and Evelyn getting up in the morning and arguing over who get's their height measured first on the growth chart we're going to put by the door.  I picture her bossing him around and him ignoring her.  I try to think of normal stuff in the future and hold on to the hope that one day those thoughts will be real.

Welcome to the Bad Side of 50/50

50% of kids who have the Norwood procedure with the BT shunt (which Rowan did) will need some sort of repair of the shunt between surgeries.  This is where we are at.

Rowan is having more trouble breathing, swelling up a lot, and his oxygen saturation levels are continuing to drop.  This is normally what it looks like when the shunt has problems.

They have him scheduled for cath tomorrow morning.  During the cath, they will likely put a stent in the BT shunt.  This should instantly fix the problems and he should return to “normal” quickly.  We should see his saturation back up and he should de-puff and be ready to go home in a few days.

That said, they did warn us that if he turns super bad quickly today, they may take him down and do an  emergency cath.

My husband was able to switch his schedule for next month so that he is not working nights and if something turned horrible quickly, he can leave.  He is getting a plane ticket to come back to Tulsa on Wednesday so he can go back to work Thursday.  In light of the cath and Matt’s schedule change, I will be staying in St. Louis.  All of this is of course, subject to change in the next 48 hours.

I’m pretty nervous about him going to cath lab.  They have to give him paralytics and intubate him again for it.  He needs it or he’ll die.  Hard to argue with that.  I will, however, be trying really hard not to cry when they take him away for it tomorrow.

We’re supposed to go home tomorrow so…

OF COURSE we have problems that surface today that means there is no way in the ‘verse that we are going to be doing that on Monday or Tuesday.  Rowan puffed up.  When you have heart failure, your body stores up fluid.  Lasix is a medication that makes people pee out the extra fluid.  Rowan has been on this for almost all of his life because his heart has to work harder than it should right now. The puffiness lends to the theory that something is making him work harder than he has been.  So today they put him on IV Lasix to de-puff him, which is working very well, and trying to explain what is causing the puffing.

Entonces….

The problem: why is he building up more fluid and having lower oxygen saturation rates?

Suspected answer: the shunt that was put in during the Norwood procedure may have narrowed.

What causes that?: Lots of things.  The BT shunt is fickle and comes with lots of complication risks which is one of the reasons they do the Glenn and get it out by 6 months.

How do we know if the shunt has narrowed?: He’ll need another cardiac catheterization, which is a procedure he would need to be intubated and paralyzed for.

And if they find out the shunt is narrowed?: Then they would need to stent it, or since he is almost at the 3 month mark, there may be talk of doing his next surgery, the Glenn. We are not sure if that is really an option at this point.

So what now?: Tomorrow morning is “BIG ROUNDS” with everybody.  We are going to ask the surgeon his thoughts and find out what the “team” thinks.  We are also working on figuring out if he needs to have his cath here, or if he can have it in Tulsa.  Because he looks clinically different now, we are also trying to determine if insurance will now transport him back to Tulsa.  The hospital here is fighting to try to get us back to Tulsa, as long as we can all agree that Rowan can be treated there.

So tomorrow the questions we want to ask are:

Does he need a cath?

What will we do if the cath shows a narrowed BT shunt?

Can the cath/procedure needed to repair the shunt if it’s narrowed be done in Tulsa?

Can we transport him there for it?

What are we looking for from Rowan to know that he is ready for the Glenn?

So once again, we wait.

What are we hoping for: AN ANSWER. And unfortunately it is the one thing you almost never get with a kiddo like Rowan.

Rowan Right Now

So one thing to expect over the next few months is for us to be able to plan for absolutely nothing.  This is a pretty difficult time for babies with his surgical repair set.  So here is sort of what “baseline” should look like for him for a while.

Rowan right now is a bit blue.  That’s expected for him and most babies at his repair stage.  When he breathes, he pulls a little bit at his chest and looks like he is struggling a little (sort of tiny ‘huffs’) – especially when he is upset. He has completed the Norwood.  After his surgery, most babies have oxygen saturations of 75 to 85 percent.  If you or I went to the doctor, we would have saturations in the high 90s.  So he is going to look a little blue/purple to us for a while.  That is expected.  In fact, if he has saturations in the 90s – that is a very bad sign for him at this stage.  So he may look blue or purple, and even a little more so when he coughs or gets mad and cries.  Nothing to be concerned about.  If he actually gets dark blue around his lips or on his hands and feet, that would be concerning.  To give you an idea, THIS is bad.  We may have to take him in a lot. Kids are normally pretty medically unstable at this point in the repair process.

His next surgery is the Glenn.  This is normally between 3 and 6 months of age (depending on surgeon, how fast they grow, and how their body handles the shunt).  So Rowan’s timing will depend on his growth between now and then.  The recovery time from surgery to discharge for that surgery is normally about 7 days.  After that surgery, Rowan may look less blue, but will still have saturation levels from 75 to 85 after that surgery.

His final surgery, the Fontan, will be his last “fix”.  Typically, it is done somewhere between 1.5 and 5 years old, depending on the source you read and the surgeon.  After it, he should be a pretty normal color and have oxygen saturations in the 90s.

That should be his final fix and he should be as “normal” as normal for him from a heart standpoint after that.  We are banking that Cystic Fibrosis does not put too much of a strain on his lung function until the repair is completed.

Having Hypoplastic Right Heart and Cystic Fibrosis is pretty much unheard of.  We’ve found exactly 1 study of a child who had Hypoplastic LEFT Heart and CF.  They did need their repairs done earlier.  That child had the Norwood done shortly after birth, the Glenn, and then needed the Fontan at age 2.

So here is my point – he’s going to be sick and blue a lot until his next surgery.  It sucks, it’s scary and nerve wracking, but for him, it is okay.  It’s very unlikely that he will have a sudden problem spring up – should he be having heart issues we would likely see a bit more of a gradual change over a day or two. 

Truthfully, I doubt we’ll sleep over the next few months.  The shunt he has in his heart right now is one of the things that can cause problems between the first and second surgery.  During the Glenn, they will remove it and it will no longer be an issue.  Really, we are going to be fighting to get him to the Glenn, after that, it will be a (maybe easier) fight to get him to the Fontan…and after that, maybe we’ll sleep.

Progress Update

Rowan had a fever a few days ago.  They drew blood out of his IV and tested it.  It grew bacteria, meaning that he had an infection in his blood stream.  Anytime that happens in the hospital, you get 10 days of IV administered antibiotics.  He’s had it for 3 days, which means Rowan will need to be in the hospital for at least another week, unless later results say there is an antibiotic he can take for it through his NG tube.  Every day, blood is drawn from that IV and re-tested for bacteria.  So far, the blood drawn yesterday has not shown any bacterial growth, meaning that the treatment is likely going to rid him of this issue.  He also hasn’t had a fever for over 24 hours now.

Rowan also had his “blow-by” turned off today.  They want to make sure he can recover from low blood oxygen levels in times of coughing fits or angry fits without it.  He had one “de-SAT” spell today that they turned the blow by back on for, and when he recovered, we realized it hadn’t been turned on correctly and wasn’t actually doing anything.  So, still unconcerned at this point.

And on to today’s adventure: Upper GI and Small Bowel Follow-through

So today they gave Rowan some Barium, and took x-ray pictures of it as it moved through his system to make sure he doesn’t have severe reflux or any problems tracking.  They didn’t suspect any issues but because he’d had a history of trouble they wanted to map out how he was doing before discharge.  He did fine.

The cool part – when they came to get him for his appointment, the tech said “ok, so Mom, are you going to carry him.”

WHAT?!?!?!  That’s right, I got to wrap him up and physically carry him downstairs to the imaging center.  Like a normal stinking kid! No hospital bed. In fact, we put him in the infant carrier between his images (every 15 minutes). Like he was almost ready to go home. Sure, the technician did have the sensitivity to say something like “he looks really blue…is he supposed to be that blue?” Um, yes. He’s actually looking pretty normal today.

BUT, it was nice. It was normal-ish.

Rowan also has some other normal tests to go through today.

AND NOW – the crappy news.  Our insurance said they would not cover transfer back to Tulsa.  We cannot stay in St. Louis.  We are going to have to leave St. Louis without our son and come back up when we can or when it is time to discharge him.  We have to be back in Tulsa March 1st.  We are pretty certain there is no way that Rowan will be able to come with us.

10 out of 10

Our tolerance for conversations we overhear around the hospital is growing.  When your child is in a hospital bed, chest open, breathing with a tube down their throat, it is really hard not to want to punch the woman sobbing on her cell phone about how she can’t handle that her son had his appendix out.  But we’ve grown in wisdom by reminding ourselves that on a 10 out of 10 scale for the worst thing that has ever happened to you, this woman’s 10 is her son’s appendix being removed.  Our 10 just happens to be a lot higher. I’ve learned to still feel genuine empathy for people whose problems do not seem as severe as our own, but are no less difficult for those experiencing them.  With that in mind, here is something that my husband commented on one of my other blogs.

“Just to add my part, the biggest thing that people don't realize (is) that our 10 out of 10 for stress, anxiety, etc. is so dramatically different now than it was before our little man-cub came along. ‘Don't sweat the small stuff.’ When you have to look at the possibility of your son being too sick to have the surgery he needs to live, what really can have any hold on you after that? Everything is small stuff from that moment on. Yes, it sucks that we are still here, can't play with, hold, and tell Little Bird we love her as we put her in bed for the night. By all that is good in the world, it sucks something fierce. But our son is still here. He is fighting every day against a heart that beats with a little less ability than ours, lungs that are being bombarded by not having the proteins that help keep his fluids flowing nicely, and coming off of medications that adults spend years trying to get out of their systems. All of this while far away from home, being prodded by nurses, doctors, techs, respiratory therapists, and whoever else that needs to do something to him. As parents, we are supposed to be stronger than our children. So we make ourselves stronger every day just so we can keep up with a little guy that hasn't even been out of the womb for more than three months.

We will not be outdone by an infant.”

What a weird day.

Doc guest post:

So...apparently sometime in the last 24 hours Rowan's NJ became an NG (basically his feeding tube changed positions, you can refer back a few posts for the explanations of NJ/NG). So maybe his weirdness last night/today was because of that. They are going to go ahead and try feeding as an NG (this was gonna be the next step anyway). He decided to have a fever overnight, so there was a big redraw of lab work and a chest x-ray, which then led to an ultrasound of his chest to make sure that there wasn't any fluid in his chest. He is fine. There is nothing wrong with him. But because of all of this, it is possible we won't get to come home quite yet. We are hoping that when nothing bad happens through tomorrow morning that they will decide he is fine and go through with discharging him Thursday as previously planned.

Not really much else to report, our little man is slowly coming off of three different medications. One of these is morphine and is the only one he actually has trouble with weaning. He is a little fussy right before his next dose and gets kinda sweaty/hot. Because they check his vitals at the same time this medicine is due, so we are going with he is just withdrawing. Yes, you can have a fever with withdrawal. Withdrawal sucks. It can cause all kinds of weird things. Which means he is going to get worked up for things despite it likely being medication related. With a kid with CHD and Cystic Fibrosis, you have to be cautious. That very much sucks from a parental standpoint.

By the way, special thanks to our good friend Alex Jech for dropping me off at the airport yesterday morning. He and Katie have their own newborn to take care of and it was really great of him to take the time and lose the sleep. If only I hadn't forgotten to give him the car keys (it was 4:30 AM and I only slept about two hours, so I am not terribly mad at myself for that, lol). So if anybody wants to get car keys from our house, go to their house, and then drive our car back to our house, that would be spectacular.

Almost there...almost there...