Hi, my name is Noah Abner Clark. During my 20-week ultrasound, I was diagnosed with a severe right-sided congenital diaphragmatic hernia. Essentially, my diaphragm failed to fully form, and thus, many of my abdominal organs (namely my liver), herniated into my chest which in turn inhibited the growth of my emergent lungs. The average survival-rate for babies specifically like me is around 50%--a proverbial coin toss. My mom and dad thought that perhaps in-utero surgery would be best, but they ultimately decided that for my case, surgery after my birth would give me even a better chance to survive.

In order to find the finest care, my parents consulted with or actually visited many far-away places, including San Francisco, Houston, Cincinnati, Philadelphia, Denver, Baltimore, and Seattle. Ultimately, however, we decided to travel 3500 miles from home so that I could be born and live at Johns Hopkins All Children's Hospital in sunny St. Petersburg FL. My doctor is Dr. David Kays and my nurse is Joy Perkins. You should pray for them.

My road will be long, one potentially wrought with many setbacks and "close-calls." I'll do my best, but I would appreciate some much-needed help. So if you would, pray for me. And if I don't make it, still know that it is "well with my soul."


Sincerely, your pal,
Noah

P.S. You can learn more about what I'll be experiencing if you watch "Adam's Story"--a video my folks found while surfing the web. Right-click HERE.
P.S.S. Check back regularly to see my blog updates.

Wednesday, November 9, 2016

NOV 9, 2016--Speed Breathing


Good Afternoon! I do hope that all of my friends are enjoying their days today. I am doing my best to enjoy mine. Well, many of my friends have been asking me for a medical update. We babies don't know too much about medicine, but I'll do my best to give you the "skinny."

I'm continuing to improve, albeit very slowly. My pressures have more or less stabilized, so I told Dr. Kays to stop my Dopamine and my Hydrocortisone. However, I did become a bit of a drug addict, so I'm still on a little Fentanyl--not very much though. I think I'll be able to kick the habit in a day or two. I do need to confess that I am doping (yes, like Lance Armstrong) in order to keep my red blood cell count up. Like Lance, we do what we need to do in order to win! My precedex has been reduced some--its a bit of a sedative, pain killer, and anxiety drug. I'm not as nervous about life as I used to be, so I imagine that Dr. Kays is going to cut me loose from the precedex soon.

The thing that I just cannot seem to figure out, however, is breathing. Here is a quiz for you: which of the following animals have a faster resting respiratory rate than me: (a) a bunny; (b) a newborn foal; or (c) a cat? If you answered with "none of the above," you would be correct. A bunny's rate is about 45, a newborn foal's is about 80, and a cat's is about 60. The screenshot above shows my resting respiratory rate at about 120! That was three days ago. My rate is getting a little better every day, and it has been down into the 60s, but it hangs out a lot in the 80s.

And it better continue to improve. You know why? Because if it doesn't, Dr. Kays will spear my chest cavity with a long needle in order to take fluid out of it! How is that for motivation?! For being a doctor, he sure has peculiar methods for helping us babies out.

My friends, that is the quick-and-dirty update. Just remember, always do your best. Otherwise, you may get stabbed by that proverbial needle. Your pal, Noah Abner.

9 comments:

Stephen & Mildred Broadwell said...

We'll pray for Noah's breathing rate to go down. Hang in there!

Debi Vinnedge said...

Noah, Noah - you are going to get this breathing thing down very soon, so don't worry! Tell everyone to be patient with you because you sure didn't have to worry about it before you were born in your mommy's tummy. She took care of that for you. Then you were born and they stuck all kinds of stuff in your to take mommy's place of breathing for you and now yup - you gotta learn little guy! Well practice makes perfect so keep it up - praying for you every day and God is listening! ;-)

Unknown said...

Your amazing Mr. Noah! Keep doing your best! We'll keep the prayers coming!!! Love you little man!!!!!

Unknown said...

Praying for you Noah! You can do this. I know you can. You have some fun siblings who I am sure are wanting to play with you! Keep working on you breathing.

Anonymous said...

Donna said... Hmmm... Not so hot on needles myself but needs must I suppose. You are doing so,so well. Look at how far you have come! You should feel very proud of yourself. We all are. D x

Tommy said...

Hey Little man you are doing great and getting stronger by the day. I have not a fan of needles either so will pray that Dr Kays doesn't have to take that route.......you are a little tropper.

PS - your Ghost Writer is a pretty amazing too. ATB Shannon and family.

Jenn Ryan said...

We will keep praying for improvements on breathing! Love you guys!

Unknown said...

What a little fighter you are, Noah! Love to hear that you are trying to kick your drug habit. Hugs & kisses...

Unknown said...

Good morning from foggy North Idaho. Noah...keep up the great progress. We will be praying that your breathing finds the right zone to lie in. I can only imagine that being hooked up to all those machines would be pretty stressful in itself. Hopefully Mom and Dad get to hold and comfort you alot. Even though Dr. Kays holds a big needle, he wont use it unless it's absolutely necessary. Hang in there little man.

Gentle kisses and hugs, Aunt Snookie and Uncle Grant