Taking Better Care of Your Chronically Ill Child

We go to the doctor or hospital a lot.  Rowan has been admitted 4 times (5 if you count right after birth when he was transferred).  He sees 3 doctors regularly, but has seen other specialists, nurses, etc.  Every doctor’s visit or nursing visit they like updates on medication, what other doctors have said, etc.

So a while back, a wonderful woman, Darla, recommended that I make a sort of medical resume for Rowan to give when we go to the hospital or doctor.  I finally got around to doing it and realized that this could have saved us lots of time if we’d done it sooner!

This little resume allows us to put all of his important medical information in a document.  I can carry a printed copy of the latest with me and when we change something, I’ll just make a new one.  This way any nurse or doctor can make a copy and have all of his information in one place, listed accurately.  I don’t have to try to remember all of his medications and how much he gets while I am dealing with a diaper change or fussy kiddo.  This insures that Rowan gets the best care faster.

I removed the personal information from the one I made for Rowan to show you what it looks like!  We included a picture of him to make it more personal (great tip Darla) and Dr. Dad put it in a similar format to how they do history and physical reports at the hospital he works at.

You can view it Here

And you can view a blank version with instructions for what to put in each section here if you would like to make one for your kiddo. 

My Watch Begins…

Rowan is slowly becoming more and more unstable.  Some of the time he is doing fantastic on very little oxygen.  Others he drops low in his saturation numbers for about 10 minutes and no amount of oxygen will fix it.  Then after 10 minutes he pops back up and is fine.  He coughs more.  He desats while he is sleeping sometimes…

The pulmonologist thinks his lungs are fine and from a respiratory standpoint he is doing fine.  He is concerned that Rowan needs this heart repair sooner and can certainly not afford any delays and said that he would call the surgeons and talk to them to express his feelings that Rowan is fine from a respiratory standpoint and that his “incident” a few weeks ago wasn’t respiratory and was cardiac.  Rowan will see the cardiologist on Friday to check up on him.

In the meantime…

Rowan’s oxygen needs to be adjusted a few times an hour.  He needs to be on the monitor all the time.  He smiles.  He plays.  He is building up strength…he just gets tired easily.

We have 13 days until surgery.  We just have to make sure that we watch him closely for signs of sickness before surgery…

and so our watch begins.

Rowan’s Norwood Recovery

We are getting ready for Rowan to have his Glenn.  The Glenn is supposed to be cake compared to the Norwood, but getting close to it has made me think back to before Rowan had his Norwood.  I went back and looked at the pictures we took of Rowan during his recovery.  We have not shared them up to this point, largely because we didn’t want to show the bad until we knew there was a happy ending for him.

Honestly, I wish I had seen pictures of kids who had the Norwood done before Rowan had his.  I wasn’t sure what to expect.  I think you can’t ever be ready, but it certainly helps to have an idea of what to expect.

Rowan’s recovery took nearly 3 months.  He was born December 10th, had his Norwood December 23rd, and came home on March 19th. 

Rowan had complications with persistent chest fluid build up that prevented him being extubated for a long time.  He eventually needed a second surgery (thoracic duct ligation) to fix it.  He later had surgery for a g-button placement and fundoplication to make sure that he was not aspirating fluids.

These photos are somewhat graphic.  I am posting a link so that parents who may have to watch their child go through this can see what it looked like for us.  This is encouragement for them to “hang in there” because Rowan had it rough.  Today he is smiling and happy.  He is a little behind developmentally, but he is progressing.  He doesn’t act like he’s been through this incredible trial.  He doesn’t hate life (though for months of narcotic withdrawal, we were worried he wouldn’t ever be happy).  He took the long hard recovery route, and he made it.  It’s hard – but you have to be tougher than your kid.  So if being prepared helps you – here is Rowan’s Norwood Recovery Link.

http://photobucket.com/RowansNorwoodRecovery

Workout With Rowan

Rowan starts his workouts with stretches.  All workouts start with stretches!  These stretches aim to increase his range of motion and engage muscle groups he would otherwise not be using. I like to use songs.  My favorite for arms is one were we sing what we’re doing:

“Reach up. Reach down.  Reach out.  Reach across.

Reach up. Touch your nose. Reach down. Touch your toes.”

We do it with one arm, then the other, then both.

Next we do a leg muscle dance! For those of you familiar with Bruno Mars…this is to the tune of my favorite song of his…

(my little sister filmed it so the first half is out of focus)

When we started doing this dance game, Rowan’s legs were like limp spaghetti.  By day two, there was some resistance occasionally.  Now it almost seems like Rowan has leg muscles!  This dance is so much fun….I often have to do it with Evelyn too.

Then we work on slowly turning our head from side to side to warm up neck muscles and try to loosen the ones that keep him facing right more often than left.

After stretching, we sit up for one minute and hold our head up.  Sometimes we like it…sometimes we don’t.

 

Then it’s time to do arms.  Playmats for kiddos are really very similar to pilates machines!  With the rings on the playmat, I can increase the tension by shortening the chain, or loosen the resistance by lengthening it.  Rowan pulls across his chest for two minutes and then straight down for two minutes on both sides (or however long he’ll hold the ring).

 

Next we sit up for a minute again.

Then we lay on each side for 10 minutes with a fun and intoxicating toy just out of reach.  Sisters are good substitutes.  This helps Rowan work on strengthening his torso to develop “roll over” muscles.

Then we sit up for a minute again.

Next, we do Rowan’s least favorite…tummy time.  I try to help him anchor himself by putting a hand against his diaper so he can push against in attempts to pull his head up.

Then…we sit up for a minute again…

AND THEN…

it’s rest time.

 

We do this at least once a day, twice if we can fit it in.  Until I can get a physical therapist out to help again, I’m all he’s got.  I want him supporting his own head and sitting in the Bumbo before his Glenn (17 days..).  I’d also like him to be able to roll on his left side.  If he could do a push up…I’d buy everyone who reads this blog a drink, haha.  You need goals!

Using My Resources

So yesterday I called our cardiology office and asked to speak with our doctor’s nurse.  She is amazing.  I apologized for calling what feels like every other day and she immediately encouraged me to call EVERY day if I need to.  We talked a little about what Rowan had been looking like…

hanging low in the 70s when he is awake…

oxygen not really helping that much….

sleepier….

Our cardiologist was going to be in the Cath lab all day today, so she told me to just bring Rowan in to see her.  She said she’d check him out for me.

So I take Rowan in along with our home pulse ox machine (so we can make sure it’s reading accurately).  Rowan’s blood pressure is fine and he is SATing great.  She watches him for a while and tells me to keep up with the extra 1/2 dose of lasix to keep fluid off of him and that he looks great!

Rowan has been more alert today.  With his blood pressure being fine, we aren’t worried his prior sleepiness was heart related.  The lasix seem to have helped so I’m optimistic that we have a few days before he acts weird again.

It was great to have someone check him out for me.  As tired as I am, I don’t want to miss something or not be cautious enough because I think he is probably okay.  The nurse made sure to let me know that I could bring him in anytime if I just needed eyes on him.

She also gave me a hug…and I needed it.  This is easily the scariest thing I have ever done.  It’s nice to be reminded that I have help.

What Can My Baby Wear in the NICU? CICU? PICU?…any ICU…

When Rowan was diagnosed with CHD, one of the things I was begging for help with was figuring out what I needed to change about baby items so he would have things he could use in the ICU. What can my baby wear? What clothing is good for him after open heart surgery? Some ICUs may have different rules, but I've found that as long as the clothing doesn't interfere with the medical equipment most docs and nurses in my experience have been fine with it. You can always ask the ICU your kiddo will be staying in if they have specific rules ahead of time.   Just because he was going to be in a bed for a long time didn’t mean that I didn’t want there to be clear signs in his room that we loved him and remembered that he was a person.  Also – all kids should get to be cute.
There wasn’t a list or examples anywhere so I thought I’d share a list of the things that I liked.  I couldn’t find much in stores.  At a shower, the ladies at my work gave me an Amazon gift card which was amazing because it was the only place I could get things he could wear.
1.) Socks – most heart babies will need a pulse ox probe on them, BUT that doesn’t mean that you can’t put a sock on over it. A lot of heart kiddos have trouble keeping their feet and hands warm. I love the BabyLegs brand socks because they seem to stay on feet better than others.

2.) Button up shirts– Ok, let me say this, if you can’t unbutton it all the way everywhere, you could have trouble getting it on your kiddo.  Rowan had lots of IVs (and a lot of kids do when they have a major surgery like the Norwood with an extensive recovery) – so your kiddo could have an IV in their neck, leg, and head.  You’re not going to pull a t-shirt over a head IV, right?  So here are my favorite, easiest to use, and most practical items!
These shirts are great because they allow easy diaper changing. They also have cuffs for little hands so you can keep their fingers warm…and keep them from trying to pull out wires (they do that from a very young age).

3.) Button all the way up everywhere onesies - These onesies are great because you can leave out any body part that has some sort of wire going in and you can let EKG leads stay on and stick out one of the center buttons. You can’t tell it from the picture, but the legs unbutton all the way around on both sides so it’s almost like laying a top half on a bottom half, which is perfect!

Kickypants are super soft onesies that LOOK like they are a button up all the way item, but they aren’t.  Only one leg buttons down and it has a cuff on the bottom that does not un button.  They are great when your kid is transitioning out of the hospital and on a normal floor, but hard to get on in the ICU.

WE FINALLY HAVE A SCHEDULE!!!!

THAT INVOLVES AN EIGHT HOUR PERIOD OF SLEEP AT NIGHT!!!!
Rowan may almost be 5.5 months old…but we finally will be able to sleep all night (provided he does)!  We’ve been slowly adjusting medicine schedules to line them up better and Rowan’s schedule is so much more manageable now! See below!
6AM – meds and milk
8AM – shot
10AM – meds and milk
2PM – meds and milk
6PM – meds and milk
8PM – shot
10PM – meds and milk
After surgery – we are hoping the shots go away and he will be getting meds with meals and that is it!
So if we can now just get Rowan to actually SLEEP all night……

Panicking the Appropriate Amount

There is rush your kid to the ER panic…

and then there is page the cardiologist on call panic.

Tonight was page the cardiologist panic.  Rowan looked a bit blue this afternoon so I hooked up his pulse ox probe.  I normally try to leave it off when he is awake and active because he coughs or struggles to try to do things and it alarms a lot and scares him and Evelyn and it makes me stinking anxious too.

So – probe on.  Hello 60s.  So I turned his oxygen up from 1/2L to 3/4L.  No change.  3/4L to 1L…no change.  1.5L…low 70s.

Not good enough.  I noticed he was looking a little bit puffy too.

So I called the cardiologist office (of course this happens at 6pm right after the office closed).  Within 5 minutes the cardiologist calls.  After talking with her for a few minutes, she tells me that I should give him a little bit of tylenol in case he has a low grade fever from the vaccinations he got yesterday and that I should make sure he responds well to his lasix dose.  She thinks this is a fluid balance issue, but if he doesn’t get better or gets worse – he may need to go to the ER. 

So I go back in the room Rowan is now screaming and crying and sweating in.  Evelyn had opened the pizza box after crying because I told her she couldn’t eat pizza until Dad got home.  She cleverly (during my 3 minute phone conversation in the closet so I could hear the cardiologist) had realized that ranch dressing was in fact, NOT pizza so she had been eating it with her fingers and painting the dining room table.

I notice that Rowan isn’t really SATing much higher, despite the higher oxygen.  After a little while I turn it back down to 1/2 L…and it doesn’t change.  After about an hour, the Lasix works…and he’s SATing just fine again.

Punk.

So no real worry.  He may need an extra dose of his “de-puffing” medicine every now and then…but he’s stinking fine.

So I had a panic attack when I thought I was about to have to rush him back to the hospital by myself with Evelyn on board…and now am just tired/relieved.

Maybe he’ll be nice after this little scare tactic and sleep tonight so I can too.

Surgery Scheduled–The Glenn

Rowan’s Glenn has been scheduled here in Tulsa.  We will go for the pre-op appointment on June 4th.  On June 11th, Rowan will have a chest xray and blood work done, and on June 12th, we’ll get step 2 of Rowan’s 3 Step Heart Repair DONE!
My biggest fear is making it to June 12th.  The surgeons wanted to give Rowan several weeks from his last hospitalization (sound familiar?) before surgery.  That makes SO much sense…if we aren’t talking about Rowan.  Rowan has been home at the longest…15 days.  So we now have to make it 26 days without incident.  You can see my anxiety about that.
So I’ll do what I can.  I will continue to do meds, respiratory therapy, shots, physical therapy, and switch out oxygen tanks and just hope that taking the best care of him I can will be enough.
Doc has decided to take June off.  It’s a good thing because I am about at my end.  Yesterday I was so exhausted my body just quit.  I got really sick and have been trying to recover today (thanks Mom for coming to my rescue).  I only have to make it 14 more days before I won’t be alone taking care of him.  I think I can do that.
26 days.  We have to make it 26 days.

Home For Mother’s Day

This Mother’s Day, more than anything I am thankful that I have TWO children.  And I fully expect many more Mother’s Days with AT LEAST that many.

Rowan came home from the hospital yesterday.  After a rocky first hour home, he seems to have really settled in.  He seems to be feeling much better.  We could tell he felt sore and all around icky for a day or two after his cath.

So on a SUPER happy note – we are working on moving his meds around and in a few days, we will get to go from 10pm to 6am without giving meds!  Rowan sleeps pretty well when he’s been forced to work during the day (look forward to a “what therapy for Rowan looks like – Mommy style” post in the near future)…so it is mildly possible that we will sleep with Rowan home!!!

Evelyn is happy to have Rowan home and even happier that she got a Castle to play with as a present from the store so she has something new and exciting to play with while we adjust to caring for Rowan again.

Since Rowan came home, we have weaned his oxygen from 1 L to 3/4 of a L.  He was on 1/2 overnight and did fine, but wakes up congested in the mornings so we turned him back up. 

On the 25th, SoonerStart will begin servicing Rowan to provide therapy for him to help him catch up developmentally in all aspects.  This is a free service provided to families with children who have developmental delays in Oklahoma.  Another reason I am happy to pay for taxes and support several different social programs.  Insurance covered therapy for Rowan for 8 weeks.  After that, it is 100% out of our own pocket…and with him being hospitalized for near twice that, I’m pretty sure that 8 weeks of once a week visiting will not catch most kids up.  We are super thankful to all tax payers in Oklahoma that this service is available.

We are working on getting Rowan’s “wolf den” room together (Pinterest in the HOUSE) and getting our house set up to have wood floors installed to keep allergens down to help promote healthy living for Rowan.

Should be a busy few weeks ahead – hopefully they will not include Rowan being in the hospital unless it is for his Glenn!

Le Plan

Cardio conference was today.

The Plan:

Rowan goes home sometime this weekend (pending some minor fix up issues to his tech before he goes home)

Rowan is on oxygen while at home as needed. 

Rowan’s medication that lowers pressures in the lung vessels is increased and hopefully lowers his oxygen requirement.

Rowan gets his Glenn in TULSA sometime this summer, likely June.

NO COMPLAINTS HERE!!!

Call me if…

You could “adopt a day” June 2nd to June 10th to lend a hand.  My normal help with Evelyn and Rowan will be in Disney World.  I am hoping Rowan will be post-Glenn and home doing AWESOME by then but he may be in the hospital.  Matt will be working nights that whole month so any help is welcome!  Text me if this is something you feel you can help out with!  We are so grateful for all of your help and continue to lean on our friends and family in what has been a very difficult near-year.  Thank you.

Not Great But Good Enough

AND WE WILL TAKE IT!

Rowan went to Cath at about 10:30 this morning.  We were called at about 12:30 and they notified us that everything went fine and they were moving Rowan to recovery.  The doc was “de-garbing” and would see us in about 10-15 minutes.

They were the longest 10-15 minutes turned 30-45 minutes I think I have ever tried to occupy myself.  Dr. Kimberling, Rowan’s cardiologist, brought new pictures of what Rowan’s heart looks like for us (which took a while to image up – thus the delay) and met us in Rowan’s room.

There are two numbers they look at with determining if someone is ready for/a candidate for the Glenn.

One they want to be under 16 and under 12 is ideal.  The other is under 3.0 and ideally under 2.0.  Rowan was 14 and 2.15.  His lungs were working just fine.  They are going to up the medicine that lowers those pressures even more just a tad to help lower that resistance.

We believe that Rowan needing oxygen and SATing a little lower is likely a combination of the pressures being slightly higher than ideal AND the fact that Rowan is a giant.

So tomorrow, the Tulsa surgery team is meeting to discuss their patients at noon.  Dr. Kimberling will present Rowan as a candidate for the Glenn and they will discuss and hopefully have a plan.  If the team here is comfortable, we will do his Glenn here in Tulsa.

BUT – we were in no way told no!  At worst, we may be looking at a “not yet”.  But there was no sign that his lungs are deteriorating…all leading to a fantastic

OH YEAH! GIVE IT TO THEM ROWAN!!! NOT GREAT BUT GOOD ENOUGH IS FAN-STINKING-TASTIC!!!

Rowan will very likely get his second surgery.  He came back from Cath extubated and has been hanging out in his room. 

Matt and I have been sort of stumped.  We are super happy/relieved/excited at the prospect of life with Rowan being long and happy…and yet feel like we need to sleep for about 3 days to get the tension out of us!

Yay Rowan!

Now we just have to get scheduled for surgery and have/recover from an open heart and go home!

On his way

Rowan just left for Cath. They are going to check his pressures as well as verify that he is structurally sound. If they encounter anything, the doc will call us to discuss any interventions necessary. This Cath will be accepted by St Louis as a pre-Glenn analysis. Hopefully, we can prove that Rowan is ready for his Glenn and get him on the surgery schedule soon. It should take a few hours.

Sometimes…you need to be a little crazy

Know your resources…and build them up!  I called another Heart Mom I know and blew her ear off on Tuesday.  She pointed me in the right direction and I called our cardiologist’s nurse line and expressed my concerns and panic.  I talked with Rowan’s pulmonologist at the hospital Wednesday morning and he validated what I was feeling “gut” wise.

So now we have a plan!!!

Rowan is getting his Cath done in Tulsa tomorrow (Thursday) around 9AM. 

We’re hoping that his cath shows that he is ready for the next stage of his heart repair and that we can plan for that sooner rather than later.

And Crazy Mom Has Arrived

Folks – there are times when you have a sick child, that you become “crazy mom” (or dad).  Times when the logic side of you knows that the situation isn’t as dire as it feels, but the parent part of you completely freaks and panics and starts going nuts about getting something done RIGHT NOW.

Today, I hit that mark.

When I went in to see Rowan this morning, he was on .5 liters on oxygen and his SATs were hovering  between 68-74.  You’ll note that this is NOT 75-85 like we want.  Turning his oxygen up doesn’t really seem to do anything.  The test that came back positive for an infection hasn’t said that he really has one for sure.  The “preliminary” did.  That’s the last we heard.

My gut says this isn’t him being sick.  His cough sounds better and he is barely coughing now.  He still smiles some (though he seemed sleepier today).  Based on my understanding, I think that this could just be that he is outgrowing the first phase of his repair, and that he is ready for the Glenn.

No doctor has told me that, but that’s my current gut.

Rowan looked at me today while he was alarming and it was like he went “Mom. Do something.”

Well, hell.

So the Docs are now working to get ahold of St. Louis and see what they think.  We’re working on figuring out if team here can take over Rowan’s care or if St. Louis wants him there…

but his cath that was supposed to be Wednesday has been cancelled.

Is Rowan in any immediate danger? I don’t think so.  But seeing that is is NOT getting better and moving in the right direction makes me nuts.  I want a plan.

So I have flipped the switch.  I feel panicked and I’m pushing and pushing to get someone, somewhere, to give me a plan for figuring out what is going on and moving forward.  I understand that things work slowly…but the mom in me is scared.  SUPER scared that Rowan will need his Glenn before he is “well” for long enough to get a cath that says he can.

So I’m going to try to stay calm. I think all the people that need to be looking at Rowan’s situation have been contacted, and hopefully soon we’ll have something to go off of to develop a plan.

Until then, I think I’m going to feel a bit nuts.

Short Update

Rowan got down to .1 liters.  They turned the oxygen off.  Rowan then got mad.  Rowan is now on more than 1.0 liters which is ten times the amount of oxygen he was on earlier.

They are hoping to turn him back down tonight.

I for one DO NOT want his cath done next week.  We know that he has some sort of bacterial infection due to a culture that grew – and I don’t want a cath that shows artificially bad numbers because he had an infection.

However, at this point, to the best of my knowledge no one has called St. Louis to ask about rescheduling.

I’m starting to freak out.  Rowan had a shunt put in that was 4mm (1 mm per kilo the kiddo weighs is a rule we saw somewhere).  Rowan now weighs over 8 kilos.

One of the requirements for the Glenn is that kiddos be above 5 kilos…which he is way WAY past.

So I feel like we’ve hit a point where we aren’t sure what timing is going to look like.  Most resources say the Glenn is done at 3-6 month of age.  Rowan turns 5 months next week.  They wanted to wait two weeks past any event to do his cath, so if we wait two more weeks, then wait a week for the cardiologists to have their meeting and decide if he’s okay…we’re at the end of the timeline.

So my plan is to call St. Louis Monday if a doctor hasn’t and ask what they recommend with regards to his cath.  I also am going to see if I can get ahold of someone here or there who can tell me if I need to be freaking out about this timeline or not.

Hurry up and wait.  We can’t heal Rowan any faster.  I just would hate to have a cath too soon, have it show bad numbers and be turned down for the Glenn…and then wonder if he could have survived if he’d had another week.

Sigh.

Back in the hospital

But no gigantic trying to die episode this time.

Rowan went to the Cardiologist Wednesday and was SATing in the 60s, which was weird because he had been in the 80s the day before.  I thought he was probably just stressed out being at the doctor’s office and he looked good otherwise, so no major concerns.

Then we went home and he went to sleep.  I hooked up our monitor to check on him…still 60s.  I called the cardiologist and they said to put him back on oxygen and bring him in for a chest x-ray.

After cranking up his oxygen, he still wasn’t holding SATs where he normally had been and I noticed he was working harder to breath.  His nostrils were flaring and he was retracting with breaths.  Not good.  Instead of taking him for a chest x-ray, we went to the ER.

No fever. No other symptoms.  Infact, Rowan was all smiles in the ER and acting like he felt fine.

We think he probably has some sort of upper airway infection/virus.  He has been coughing some and the cough is worse than his normal cough now.

So Rowan is hanging out at the hospital for a few days until he gets over it.  He collapses quickly when this stuff happens so he is where he can be watched until he is off oxygen and breathing easy again.  We don’t’ know what that means for his cath date next week, but are hoping to find out soon.

For now, I am spending time with Evelyn, who has been really struggling lately with the fact that I am constantly taking care of Rowan and have almost no time for her.  We went to the zoo and the park and we’ve been spending some time together.  I am also trying to catch up on food and sleep.  Rowan’s care had left me sleeping 2 hours a night and eating 1 meal a day.  I’m taking advantage of our excellent care at St. Francis and I am trying to restore my disarrayed home, take care of myself a little bit, and get all of our things ready for when Rowan comes home so we can go back to crazy.

We will keep everyone posted as to when we think that will be.