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...

What to Expect When Your Expected is Expected to Come Home…ing

This week is extremely stressful for us.  We’re trying to schedule a ton of doctor’s appointments, figure out how Home Health Care is going to work, map out the fastest route to every hospital along the 7 hour + drive back to Tulsa with Rowan once he is released, learn how to give shots, meds, refill feeds, test the location of his NJ, varying methods of CPT, and that’s just for Rowan!  Matt took the car back to Tulsa and tried to rearrange furniture quickly before flying back up yesterday.

When we first got ready for Rowan, we set up for a temporary way of living with him because we didn’t think he’d be giant before he came home and thought we’d better understand his needs and could reorganize to meet those with plenty of time.  Turns out, we were wrong there! So Matt put together a “make do” set up and we’ll have to throw together a more permanent plan when we are actually home.

We also have to start packing up, buying up things we’ll need for the trip home (diapers, wipes, burp clothes, meds, etc.) and doing laundry/cleaning up at HavenHouse.

Discharge is a complicated mess for this kid! A mess we are thrilled to have, but that leads me to my point -

If you are ever in a similar situation, be prepared to feel extremely overwhelmed when you are getting ready to go home.

Expect to be stressed and tired.

Expect to freak out when anyone else freaks out.

Expect lots of little hiccups with scheduling.

Expect to give your insurance information to 12 different people.

Expect to lose phone numbers.

Expect to be paranoid that something is going to prevent your leaving.

AND

Expect to cry a lot because of how excited you are that your kiddo is actually going to get to be a part of your life.  The one you left behind two months ago to give them a chance.  The life that has your daughter waiting to meet her brother and hold him.

I cannot wait for my family to finally get to meet him.  My sisters weren’t allowed to meet him in Tulsa because of visitation restrictions.  There was a time I was afraid they wouldn’t get to meet him at all…but that is going to happen.  We are going home.

REALLY!?!?! with Elle–Blow By Edition

Today Rowan has been fine. Coughing.  Grumpy. But fine.  I say this having watched him for the last few months and knowing what color he turns when he’s in trouble and what color he is when machines mess up and he’s fine.  Machines mess up.  Today Rowan has been his normal pink-peach colored self – even during his coughing fits but the machines claim he’s not getting enough oxygen into his blood stream…so they decided to try turning on the “blow by”.

Which brings me to a segment I like to call

REALLY!?!?! with Elle

Really? Blow by air?  It’s a giant tube that puffs out cold air directly into the center of my child’s face.   And to act like it’s doing anything…Really? He’s already mad.  You puff a little air in my face and I’m going to be ticked off…does that make him breathe better instead of just highly worsening an already annoying coughing fit, I mean REALLY!?!?

Oh, so your machine is dinging and saying he’s freaking out but he looks completely fine..and you want to go by the machine? Really?! Rowan isn’t blue, purple, or any other bad color and looks slightly grumpy but you seriously think he’s doing worse? Really!?

Oh – the cardiologist is here…and he says he’s fine. Which I told you several times…before you started ticking my kid off even more by blowing air in his face, I mean REALLY!

 

Other than that, we’re getting appointments set up in Tulsa, working on getting him ready for home and training (at least me) in some basic health care skills for Rowan when he gets home.  He has a staff taking care of him that is very concerned about his well being and the machines are frustrating because they never shut up, making for one stressed out mama, but he’s on track for home.  And now that I’ve vented, I’m not going to complain anymore.

Help Wanted

Today, Rowan graduated to size 2 diapers.  We also have been told that the goal is to discharge Rowan to home on Thursday, Feb. 23rd.  So many of you have told us that you would like to help us out – and I’ve told many of you that we will welcome it when it’s time to come home…which is actually here! 

We decided we would list what we could use help with in blog posts and then if you would like to do one of those things, if you would leave a comment with your first name and what you want to cover, that would be great (ex. I can bring lunch Saturday – Theodore).

Right now, the biggest thing is that we have two cars in St. Louis.  We want to only drive one home so that someone can sit by Rowan and someone else can drive.  If you’d be willing to let us buy you a ticket to fly to St. Louis, and then drive one of our cars to Tulsa…that would be awesome. Please call or text one of us if you think you can do this. Think of it as an opportunity to test drive the classic 2003 Honda Civic.

Other requests:

• Someone who is a doctor to watch Rowan the evening of Sunday, February 26th.
• Meals for the weekend of Feb. 25th and 26th.
• Errand Runner for Friday the 24th or Saturday the 25th

The Feeding Plan

Ok – so I figured I just do one long post on what Rowan’s feeding plan looks like. 

Rowan has an NJ (nasojejunal) feeding tube.  This is a tube that goes in the nose and down into the stomach, but then goes into the Jejunum (I know that wasn’t in high school anatomy so here’s a picture!)

So his tube currently follows the TEAL line and goes a little past the stomach. 

He first needed to reach a goal of 30mL an hour of formula that contains 20 calories per ounce.  He did that last night.

Today he will switch to getting 30mL an hour of formula at 22 calories per ounce, and provided that goes well, switch to getting 30mL an hour of formula at 24 calories per ounce. 

The next step is to take that NJ tube and magically change it to an NG (nasogastric) feeding tube.  This is done by pulling the tube back a little so that it is just the BLUE line in the above diagram.

When that happens, Rowan will need to tolerate having food in his stomach and will then need to move it to the Jejunum on his own. 

*At this point he can go home*

From that point, he will work with a Speech Therapist to do swallowing assessments and determine if he is ready to try getting food in his mouth and down to the stomach.  He will keep the NG tube until he is capable of receiving all of his foods orally.  This allows us to basically give him a bottle, and put whatever he doesn’t finish down the NG tube to keep him gaining wait.

Time Frame for This Process: Easily a month or two, largely dependent on how he does with food in his stomach.

Time Frame for Going Home: Next week is what the doctor today told us she though was doable.  It’s what we are hoping for.  I just really hope that his stomach is ready to get a move on.

Happy Baby

We've been in 7 West - a normal hospital ward for a few hours now and I swear Rowan is sleeping better and happier.

We can eat in this room.  They let us give Rowan his medication.  He only has to wear a blood pressure cuff when they are taking his blood pressure.  He has no IV meds or IV food.

Life is pretty good!

He got to his new room and was greeted with a balloon and bear ensemble from his Aunt and Uncle.

We're adjusting to this new space nicely. 

This morning we had our last experience 'rounding' with the doctors in the CICU.  They were bitter sweet.  We were so happy for Rowan's "Graduation Day" as Dr. Gazit put it.  At the end of rounds, Dr. Gazit told us to "stay down there, okay?" (refering to the 'normal' unit).  And we told him we hoped we never saw him again, in the absolute best way possible.  What was really special is that when I thanked him for all he has done for our son, he told us that it was his pleasure.  BUT, he didn't say it in the "I say this all the time and am just going through the motions" way at all.  He truly and ernestly meant it.  We have been so incredibly well treated and cared for.  It's odd to feel sad to leave all the nurses, respitory therapists, doctors, and other staff that have made our time in the ICU so much more bearable.  Human kindness is truly an amazing thing. 

Heart Day

Yesterday was Valentine’s Heart Day!  It was really cold here, just like it had been for the Sweetheart Run in Tulsa Feb. 11th!  Rowan had several supporters show up to run for him in Tulsa and even a family in Abilene, TX who ran on Feb 14th.  Here are a few pictures of the people who went “Running for Rowan”.

 

 

 

 

 

Thank you so much to those of you who showed support for our family by trudging the distance this Heart Day Season.  The Run raises money for a summer camp that is staffed by nurses for surviving heart kids.  It’s a wonderful cause!

ALSO – Thank you so much to the CICU staff here who helped Rowan make a Valentine’s Present for us.

I hope all of you were able to spend some time with the ones that matter to you in life.  Valentine’s Day has never been a holiday I cared much for – but celebrating it with family has been wonderful.  Next year, we will celebrate with both of our children.

 

Happy Valentine’s Day Evelyn – We miss you!

More Pictures!

So now that Rowan is like a new baby breathing and making noises and able to move around – we’ve been taking a lot more pictures.

AND now that I’m fidgety as all get out, I decided to post some to try to occupy my time.

SO ----

Here is me, holding Rowan in my lap working on pacifier technique. In case you’re wondering, the little things on his chest are just EKG lines.  They’re stickers that monitor his heart.  His arm has a blood pressure cuff on it, and his leg has an IV.  The yellow tube is his feeding tube.

 

 

 

Here is Rowan sitting up in his car seat.  We’ve been trying to get him used to sitting in various positions…car seat included.  We want to be able to comfortably sit him up as we progress with feeds.  We only made a few jokes about how he looked very comfortable and we were fine with taking him home right now.

 

Rowan also has a Boppy he sits up on.  He likes this because he can see Mom and Dad and his animals when he sits up.  He’s very observant…for a sedated 2 month old.

 

 

 

 

We also spent some time doing “tummy time” today.  Rowan wasn’t a giant fan, but Evelyn wasn’t when she started either.  We let him hang out for a while and then gave him a break.

 

     Look at that hair!

 

 

 

 

And this ladies and gentlemen, is the money shot.

 

A facial expression truly indicative that this child…is ornery. And ours.

Better is Harder

Even though it seems backward, I am much more of a nervous wreck now than I’ve been most of our stay here.  Every cough makes me nervous. I get really upset when Rowan cries.  Any noise that is new or funny face he makes freaks me out.

Today they ordered feeds to start.  They ordered this around 8 AM and it’s 3 PM and food hasn’t arrived yet.  Which is normal.  We’re lucky if it shows up by 4 PM normally.  But today, it’s driving me nuts.

I’m close to tears almost all the time.  I’m antsy and torn between feeling like I can’t handle the hospital and feeling like I can’t leave my little man’s bedside for even an instant.

Know what it is?

It’s because someone with a medical degree said the word “home”.

That word has seemed unobtainable so often that hearing it said as if it is a reality has made me think about how long we’ve been here and how incredibly difficult this has actually been.  You tough it out because you have to and because you’re going to be here for a long time…but when the end is near, it’s hard to stay tough. 

It’s like the Riverside Bridge on the How the West Was Run 5k.  You don’t feel like you can make it…even though you can see the finish line.  But you keep telling yourself that it’s just a little further and you can do it! 

Home.

It’s just a little bit further.

He can do it.

To Go Home

Well, we just talked with Dr. Doctor.  To go home, Rowan needs to get food into his GI tract, not throw it up, and get it out the other end.  During that he cannot have the effusion come back.  This is the goal for the coming week.

If he is doing that by the end of this week, which we should know Friday-ish…he may be ready to go home.

Home can mean two things.  It can mean a transfer to Saint Francis in Tulsa…or it can mean HOME.

This means that we could be saying good-bye to Saint Louis around February 20th.

I know I should be cautious about getting excited, but I’ve been away from home, and my daughter, and my bed, and my friends and family for TOO long.  I think when you can see the end of the storm ahead…you get “horse-to-barn” syndrome (can you tell I’m from Oklahoma?) and start to chomp at the bit.  I’m hoping that these feeds go well…and we get the heck out of  Dodge  St. Louis.

Learning to Eat–Day 1

Yesterday we began Rowan’s journey to food.
We think of eating very simplistically, but seeing as Rowan has never eaten anything using his mouth – you can’t start with a bottle.  You have to start very slowly.
So Speech Therapy came by.  That’s right, Speech Paths and Speech Therapists do way more than I realized.  We were told to start getting Rowan interested in taste and to work on getting him to suck on a pacifier.
Seems instinctive that a baby would suck on a pacifier, but when you’ve had a tube down your throat forever, it’s a little more difficult.  So here is what we do several times a day now.
Step 1: Pour breastmilk into a cup and dip the pacifier in it.

Step 2: Rub the pacifier along Rowan’s bottom lip.  Wait for him to open his mouth.

Step 3: Allow taste of breastmilk to sit on Rowan’s tongue so he gets used to have some sort of taste in his mouth.  If he tries to suck on the pacifier, let him.  If not, keep pacifier at a comfortable place in his mouth and let him feel it.


The first time we did this, we had about ten minutes of wide open mouth and NO real attempt at sucking. The second time, we noticed that he was centering the pacifier in his mouth and clamping down a few times.  The last time we got a good 5 solid seconds of sucking out of him before he accidently pushed the pacifier out.
So today we are going to do at least 4 ten minute sessions while he is awake and see what happens.  Tomorrow they are going to likely start giving him food through the NJ (that yellow tube you see on his face right now) to get his digestive system working again and ready to eventually receive food from his mouth instead of a tube.

Rowan’s Room–a Tour

We are in the CICU annex now, which means that Rowan is the least sick of the kiddos and on his way to transitioning to the regular hospital instead of intensive care.

His new room is very different.  We are thrilled to be on our way to getting out, but also trying to cope with the fact that Rowan now has roommates (we’ve had two already) and that our personal space in the room has been greatly reduced.

BUT – here is what his area looks like!

 

The curtain is the boundary for his half of the room.  I would like to say that while for normal children, the bed is for sleeping and toys should never be left there…Rowan lives in his bed and is constantly monitored, so that’s why it’s okay for him.

Rowan is supervised when we are away by his friend, Ezio – who is always keeping him in line.

He also has a few balloons.  A “Congrats” from the CF nurse for being extubated is his newest addition.

He also has a Noah’s Ark Mobil that was donated by one of the families who had a child in the CICU a while ago.

He has a banner with his name from his Grandma and Grandpa and a heart valentine that Evelyn made in the playroom here.

So we try to make Rowan’s little space his own.  He gets to play with rattles and a crib mirror from time to time now.  We can hold him whenever we want to.  It may be a tiny little space, but we make it work. 

Nothing Is Ever Easy

Weaning sedation medication has been put on hold while we try to figure out Rowan's blood pressure issues.

They've been trying to switch him to an oral medication, but he keep fluctuating. His pressures get too high, so they turn the IV med back on and up the oral med, then they get way too low so they turn the IV off. Trying to adjust may take a few days, but we have to get him at the right management level on medications he can take at home.

His blood pressure fluctuating so much with the meds could be just that - meds. It could also be a few other super scary things I refuse to acknowledge until they tell me they suspect for more reasons than "let's list everything this could be to make sure we aren't missing anything".

So today (and probably a few more days) will be spent on fixing cardiovascular issues. In this world we do a lot of "one thing at a time", so once they get this done, they will switch over to weaning his meds. They want to make sure that his heart/circulatory system are working well before they add feedings or anything else.

It's hard to have two days with amazing changes and be promptly reminded that we are no way done. Because of the stress of changing blood pressures, Rowan has a little tube that pushes air through his nose in to help him out. It's barely doing anything, but hard to see when he was fine all by himself yesterday.

We had to send Evelyn home. In the new transitional room he is in there is barely enough room for my husband and I to sit, and certainly not enough for Big Sister to stand, draw, read books, or even watch a movie - so she can't really visit him anymore. We're both really down about saying goodbye to Evelyn for a while but are trying to remember that this was a step towards home that needed to happen.

We are going to talk with the doctors about what the future looks like for us. We want to know if we will need to be back in St. Louis in June for Rowan's next surgery. We want to know if it is possible for us to transfer back to Tulsa for the remainder of Rowan's recovery once his current blood pressure debacle is finished.

Rowan is 2 months old today. He weighs around 11 lb 4 oz.

Two Month Developmental Checklist I Googled:

 You makes sounds like “aaaaa” and “eeeee” when I make those sounds to you. - Check
 You smile when I speak to you. - nope
 You like toys that make sounds. - do your pumps/monitors count?
 You lift your head and shoulders up when lying on your tummy. - Um...we'll figure this out when we can let him lay on his tummy.
 You hold your hands and feet. - when they aren't restrained or attached to IVs? You do hold your hands sometimes.
 You try to hold small toys with your hands. - Does trying to yank out tubes count?

Nothing will come easy for this poor guy - except love. He's got lots of that.

What Is Left Before We Go Home

Before we can go home, Rowan needs to:

• Have his sedation medications weaned.  When he goes home we are hoping he won’t need more than Tylenol and Aspirin and maybe a blood pressure med. (They are working on this)
• Switch his blood pressure medication to one that he can take home if he needs it. (They are working on this)
• Feeding Solution – MAIN GOAL

Feeding is the thing that may take some time.  We think about eating in a very simplistic way, but a lot has to happen.  Rowan needs to be able to move liquids from the front of his mouth to the back.  He needs to build up his sucking ability.  He needs to be able to swallow once he gets food to the back of his mouth and his stomach needs to adjust to having food in it and moving it to the next stage of digestion.

Speech therapists are going to come down and help Rowan strengthen his mouth muscles so he will be better prepared for eating.  Meanwhile, they will give Rowan food through his NJ tube (this tube goes past the stomach a little).  When his digestive system is awake and moving food through it at full feeds (somewhere between 30 and 40mL per hour) they will start testing Rowan to see if he is capable of sucking in food, moving it to the back of his mouth, and swallowing down the correct tube to the stomach. 

This could be a very long process.  This could go relatively well.  We have no way of predicting right now.

The cool thing is that Rowan is now in the annex of the CICU.  He is still monitored by the same staff, but this is the next step to being completely out of intensive care and in a normal hospital room for a while.  It may not be too long until he is in 7 West instead of 7 CICU.  We can hold him whenever we want now and he is breathing without any support.

We’re beginning our plans for Rowan’s “Welcome Home” party – cuz it’s gonna happen!

Long Awaited Pictures

Some of these pictures were taken by our Heart Mom friend, Becky (mom to Oakes) – the rest taken by us off and on over the last two days.

OUT! AND STAY OUT!

The tube came out...and it was like Rowan was being born again. All that anticipation and excitement to hear those little cries!

The doctors were very happy and surprised to hear him crying. Most kids won't be able to produce actual sound when they have been intubated for so long, but our little wolf had no trouble howling.

Physical therapy was able to sit him up to move him around. He got to get rid of his baby restraints. AND...

We get to hold him every day! EVERY DAY! WAHOO!

He's had the tube out for over 7 hours and is doing perfectly. We are so hopeful that he maintains this and continues to do well.

Wonderful Day!

Sweetheart Run

Our friends, the McVays are running the Sweetheart 5k in Abilene, TX. They're wearing "Running for Rowan" shirts. Take a picture of you and your friends/family running with your own Rowan t-shirt and send it my way! I'd love to post pictures of all of Rowan's Running Support!

The Tulsa Sweetheart Run, benefiting CHAMP Camp is February 11th! You can still get information to sign up through Fleet Feet here:

http://www.fleetfeettulsa.com/event/sweetheart-run-feb-11/

Third Scheduled Try is the Charm?

Ok - Tuesday is the day we are planning to extubate!

Rowan is having some tests done today as well as some exams to make sure that he is ready. They will see how well he can pull air in on his own, make sure there are no leaks around the tube they need to know about, and check his blood to make sure his blood contains appropriate amounts of Oxygen and Carbon Dioxide.

They will start him on steroids to help his lungs and consider an afterload reducer (basically a blood pressure med) to help him when he breathes on his own as well.

Last week we went through a Neurology consultation and tests, a Nephrology consultation and blood tests, a blood stream infection, and weight loss problems with Rowan. Neurology came back saying that Rowan looks normal for a kid who has been in the ICU their whole life. Nephrology came back saying that his irregular blood levels are explainable and they aren't concerned. The blood stream infection was likely a contaminant and Rowan has had no problems to show that the infection is something for us to worry about and his weight is back up now that they've added more calories to his nutrition.

Moral of the story - don't worry until someone tells you to. If I freaked out about everything I'd be in the psych ward by now. If you have a sick kid, you have to take each day at a time and remember that worrying doesn't help anyone.

I could choose to freak out and worry about each thing. I could choose to sit and cry and feel sad - but sadness doesn't fix Rowan and doesn't help our daughter and certainly doesn't help my husband. Instead, we choose to stay positive, to make jokes and laugh off Rowan's back steps, to keep his room full of words of joy and love, and to make each day the best we can.

So I'm optimistic about Tuesday. I'm looking forward to hearing my son's voice. It's been so long I've forgotten what he sounds like. I'm looking forward to holding him when he doesn't have a tube in his mouth. I know there is a chance he will need to go back on the vent, but I'll worry about that when they tell me to.

He Does It His Way

Current Big Goal: Extubation

Goals for today:
- Lower dex from 0.8 to 0.5
- Lower NAVA support from 1.0 to 0.8

Rowan got dressed today! I always say the first step to getting better is to get up and get dressed for the day, especially when you've been sick for a while.

"Dex" is short for Precedex. It's the sedation medication Rowan is on to keep him from being uncomfortable or upset at the intubation tube. They will wean this down and then turn it off a few hours before they extubate him. This is the only constant medication Rowan gets through IV now. He was more awake today, but never acted like he was hurting or uncomfortable. Infact, he watching his mobile, looked for his wrist rattle, and followed me while I danced around the crip trying to reassure myself that neurologically, he was fine...just sleepy.

He seems so much happier on the NAVA. He gets to breathe more normally. Also, as his Uncle Scott put it "he gets all the cool tech". At this point, I swear, I'd go talk to hospitals about how awesome this setting for ventilators is for patients like Rowan. If you are a physician who doesn't know about the NAVA setting, you might read up on it. It's kind of awesome.


Tomorrow's Goals will likely be:
Lower dex from 0.5 to 0.2
Lower NAVA support from 0.8 to 0.5

Extubation Plan:
When Rowan gets to 0.5 on the NAVA, he will stay on that setting for several days. We will watch the machine. We need one number on it to stay between 10 and 15 most of the time. This shows that he is working appropriately hard and his diaphram is strong enough to support breathing forever. SO, we want him to do well when they change it to 0.5 and we want to see his numbers settling into that 10 to 15 range. When they get there consistantly, it'll be time to throw that "E" word around again.

Rowan and Evelyn are spending more time together. We are working on getting her to feel comfortable sitting with Rowan in the crib. Child Life came by and said we were doing everything we can to let Evelyn be a part of his life and vice versa. So we are settling in for our long haul...hopefully we'll get adjusted just in time for him to be ready to go home.

Check! Check! Check!

Holy Goals List for Today Batman!

Today Rowan had lots of exciting goals:

Get off Nipride (blood pressure medication)
Get a Neurology Consult
Remove Pigtail Chest Tube
Switch the NAVA vent setting
Start Clonidine (a drug)
Restart Lactulose

Step 1:
Get off Nipride - they basically just turned it off and his blood pressure is fine. Check!

Step 2:
Get a Neurology Consult - ok. So last night, Rowan was mad. He rolled his eyes and didn't take a breath for ten seconds. My personal, non-medical thought was basically "yeah...babies do that. He's sedated so he rolls his eyes and babies don't breath like we do." Matt's medical opinion was "yeah, babies do that". But - since we are in the Intensive Care Unit - if Rowan hiccups - we need a consult and lots of expensive tests. They attached lots of little leads to his head (great picture to show on prom night) and watched about 16 lines go up and down for an hour (this is called an EEG). Nothing exciting. A Neurologist came and made Rowan look different ways, freak out when she clapped, and wiggle his toes (she was awesome - and this was actually kind of fun) and she said he looked pretty good. They did an ultrasound of his head and it was unremarkable (which is great when you're Rowan). So they are now watching him on the EEG for 24 hours to see if they can catch him not breathing for a while on it. We think he's fine. If they tell us he's not, we'll worry. Until then, it's just funny to look at his rediculous teeny tiny head. But the consult was done so - Check!

Step 3:
Remove Pigtail Chest Tube - fluid went down to basically nothing. X-ray looked good. Chest tube came out. Rowan seemed much more comfortable afterwards, which is fantastic. Check! (and that fluid better stay gone)

Step 4:
Switch to NAVA - okay - the NAVA makes Rowan breathe using the correct muscles AND lets him take how many breaths at whatever size he wants. He seems much happier. He can take a few deep breaths and then breath a little faster. He can sigh. AND...he can yawn! For the first time I got to see him yawn today as he was drifting off to sleep. I cried a little. One more "normal" baby thing my son can do now. It was awesome. The NAVA setting should help him be ready for extubation - Check!

AND
Step 5 and 6 are boring and not extremely significant so, eh. Check!

I think teachers have a magic power when it comes to writing on white boards. Somehow, if I write the goals on the board, Rowan seems to actually accomplish them.

Tomorrow, I'm going to write: poop money - just to see what happens.