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.