Saturday, May 1, 2010

home sweet home

UPDATE: All of my Tylenol and Mortrin is the Target brand (shocker, I know), so we're good to go. I definitely haven't had time to watch the news or stay in the loop these last couple days, so thanks for letting me know about the recall. Thankfully, my sister-in-law let me know before we left the hospital. I'm pretty sure she knows anything you could ever know about mothering. She's SUPER-mom. :)

We are home. HOORAY. God is good. Very, very good.

Jonah is doing well. He still has some hoarseness and a hoarse cough, but other than that, he seems okay. He's still not eating as much as usual, but we hope to get him on more of a normal schedule tomorrow. We're keeping him on Tylenol or Motrin most of the time, just in case he's having some pain. His pain tolerance is so high (obviously) that I'm afraid he won't let us know if he's hurting. But he's playing and acting mostly normal. He took a three hour nap when we got home today (and I slept for an hour and a half of that!!!), and I can tell he's happy to be home. So are we. Our hospital experience was a good one, and we couldn't have asked for things to go any better, but man, it's so great to be in our own house. Dressing change (and EVERYTHING else) is so much easier here.


Here are a few more photos from the hospital.








We're outta here!

As you can see, Jonah has succeeded in tearing up his face the last few days. It's not from the intubation. There was no damage to his skin (except a tiny blister by the gtube site) during surgery. I think he's just been more tired, fussy, agitated, restless, and itchy than usual and has rubbed his face A LOT. Part of the problem is that we didn't want to give him his Atarax (itching medicine) when he was on an empty stomach, so that didn't help. Hopefully now that we are home, and he is more comfortable, it will start to improve.
And here's what all the hoopla is all about - Jonah's mic-key button.
I'll post more about all the g-tube itself later and how it all works (I'm still figuring it out myself), but I'm too tired tonight to get into it. Jonah hasn't really seemed to notice it. It sticks out more than I thought it would. I was hoping it would be more flush with his skin, but it sticks out pretty far. It hasn't caused him any problems so far, and he can still be on his belly or chest to chest with us, so I guess it's alright... just different than I expected.
Again, thank you so much for all the prayers, comments, and messages of love and encouragement. We felt them! Please continue to pray for his trachea, that all of this hoarseness is normal and will fade over the next few days. Naturally, I'm in worry mode over that and will probably stay apprehensive until he's back to normal. And if you'd like to throw in a few prayers for his sweet little face, that would be okay too. Thanks for everything.

37 comments:

Laura A said...

SO glad you're all home - he looks wonderful! Will continue to pray for all three of you (especially for Jonah to get back into a routine and for his raspiness and that sweet face!)

Love,
Laura

Miss Erin said...

Great news! My husband just asked me today if there was an update- we've all been thinking of you guys here in Minneapolis.

Lauren said...

So glad you and your sweet baby boy are back home! You guys are in my prayers!

Lari said...

So glad you're home and that all went well at the hospital. He looks great! I hope you can all get some rest tonight and get back into your normal routine. Will keep praying for the hoarseness to clear up.

Stacy aka Fahiima said...

His g-tube button is really cute for some reason :-) Prayers that he will thrive on it and avoid infection.

Nutty Mom said...

Glad he's home and doing well. I used to volunteer at a place that did equitherapy for disabled kids. A lot of them had g-tubes and it wasn't a problem at all. Even with the special belt that they had to wear over their stomachs. So I'm sure normal activities won't bother it at all. Keeping ya'll in my prayers!

The Simmons Family said...

Great post! I'm glad you're home! Owen has the Mickey and we love it! I have him on a blended diet of real foods so NO more formula.

You'll love this tube.. it's pretty simple to change out on your own too (in a few months or so).

Good Luck.

Jessi said...

Glad y'all are home and everything went so well!! You three will continue to be in my thoughts and prayers. We've got two kids in my class at work with mic-key buttons. They are a breeze to feed and don't seem phased by them at all! I'm sure this is going to be such a blessing for you, not to have to worry so much about him eating and all.
Prayers and blessings over you three.

diane said...

hi, patrice! so glad everything went well :) just wanted to inform you, in case you didn't know, ALL infants and kids tylenol, motrin, benedryl, and zyrtec that has not expired has been recalled! here is the link...

http://www.mcneilproductrecall.com/page.jhtml?id=/include/new_recall.inc

it appears to be a question of how much the effective agent is actually in the product. hope this helps!

diane

Kellye said...

I gotta say, he gets cuter every day!!! LOVE the eyes in those pictures!! Heehee!!

I'm lifting you all up in prayer, especially Jonah and his raspy voice, but I'm also specifically praying for a restful sleep for you tonight, Patrice. Everything is easier when you've had a good night's sleep. :)

Rhonda said...

A g-tube is so easy to take care of...I have done both the feeding tube and G-tube if you have any question don't hesitate to email me..He looks wonderful and so good!!!
Rhonda

Jennifer said...

Glad to hear he is home! YAY for home. I too was going to post that they have recalled Tylenol and Motrin, Benadryl and Zyrtec.. Hope this doesn't mess with your happy baby.. :S

Devon said...

i cant believe he is SOOOOO big! i'm so glad the surgery went well for both jonah and mommy! hoping you get some rest over the next few days and that jonah is back to his usual, adorable self!

Jenifer said...

Diane you read my mind! When I saw that recall this morning, I immediately thought of you guys! I checked everyone of my many bottles of Tylenol, Motrin and Benadryl and darn if everyone of them wasn't on that list! Hope no kiddo needs medicine here before we get to the store!

So glad you guys are HOME! Doesn't that make such a huge difference? I know it does to me. So thankful that everything went well and still praying for an easy transition for all of you guys!

Love,
Jenifer

jardinera linda said...

¡Qué bien que todo ha ido bien y ya estais en casa!
Y Jonah está tan guapo como siempre, blisters and all!!!

Trina and Jophie said...

Yay....Glad your home! His Mic-key is just like Jophies. We always tease that Jophie has 2 buttons...One innie(belly button of course) and one outie ;)

Krista said...

So glad you're home and everyone is well!

He looks like he was the perfect little rockstar patient for them!

Pogue Mahone said...

I am so glad everything went well; your family is always in my prayers.
When you post about the G-tube what I would wonder is: is it the sole source of nutrition or does one eat normally in addition to it, and can you also give meds thru it(since it ends up in your stomach anyway) and what is to prevent curious babies from pulling it out, esp. as it sticks out so far? I am always wishing your family well. God bless.

Just Diane said...

So glad you all are home and Jonah is doing well. Take care, Williams family. I always think about you all and pray all things good and wonderful for you.

Seth's Mommy said...

I'm so glad he's doing well! I saw where you were giving Jonah Tylenol and Motrin and wanted to make sure you saw this:
http://www.msnbc.msn.com/id/36882842/ns/health-kids_and_parenting/

God Bless!

Anita Johnson said...

So thankful to see this post this morning! We will continue to pray for all of you!

MacKenzie said...

Hey Patrice,

I am an early childhood special ed and I have a girl in my class who has a g-tube and I have to clean out a feed and start one while she is at school. I was scared the first few times I had to do it but now am a pro! Good luck and I hope Jonah gets to feeling better soon! Praying for you all and Jonah's sweet face!

MacKenzie

Lisa said...

Since you're giving him tylenol and motrin you might want to look into this: http://www.cnn.com/2010/HEALTH/05/01/drug.recall/index.html?hpt=Sbin. Praying!

Claire said...

So glad you guys are home safe. Praying.

Cxx

Vicki said...

Praying for Jonah's hoarseness here in Tennessee.....
He's so cute and full of life! He really favors his mom.

Thanks so much for sharing Jonah's story. I have learned so much from your blog.

Vicki

Linda said...

So thrilled that you are home and Jonah is doing so awesome. It was a big step for you Patrice and I am so proud of you and Matt. I know it was scary but thank God everything is going to work out. Take care and give Jonah a gentle hug for me. Love Leah's Nana

as written by Barbara said...

Jonah is the CUTEST!!! I am so in looovvvveee!
Glad you are home, and will be praying for a normal routine to come quickly.

Barbara Lyman :-)
Marysville, WA

Sarah M. said...

I am so, so glad it went well.

I have no idea if this will help you or not, but with my (non EB) daughter who has a g-tube, we have found the AMT Mini One button is easier on the skin/stoma and lasts longer than the Mic-key button does. It also is a bit flatter/closer in to the stomach. Just wanted to throw that out there for the future, in case it helps you!

Specks said...

Jonah, you are such an absolutely beautiful little man~ you melt our hearts! I am so thankful that the g tube surgery went well and that you guys are back settled in at home. Welcome to the wild g tube life~ our Bennett has undone his attachment on several nights and enjoyed a spa-like milk bath that somehow doesn't wake him up...at those times, all I can do is laugh :). Hugs to you all! Kelly S.

thorney said...

Happy to hear things are going well at home and Jonah is doing well. We will be praying for continued success and for his precious face.

Jennifer said...

How sweet home must feel! I know all of you are glad to be there again. Keeping up the prayers for you! Lots of love, Jennifer in Southeast,NC

Mom 2 One said...

Patrice,
If you have any questions about the button now that you are home feel free to email me. My son does not have EB but does have a button. He has had his for almost 5yrs. Email is Noahsmom2004@comcast.net.

Let me know if there is anything you have a ? on. I was a little nervous when he got his button, but it turned out to be not as hard as I thought it was. So let me know.

Lynne

stiner0305 said...

so happy to hear you all are doing great. he is such a cutie pie!!

Kris said...

So glad y'all are home and all is well. God is SO good!

Beth said...

What an awesome God we serve. I am so grateful that all is well. I will continue to pray for J's hoarseness, and your and Matt's continued peace and rest.

Jonah is such a beautiful baby - he gets cuter with each passing day! And you take wonderful photos - I imagine they capture Jonah so well, no? :)

(((hugs))) from Michigan.

Ellen said...

Glad to hear things went so well. You just gotta love that crazy eye pic!! lol

D said...

Glad Jonah is doing well postop. I am a little surprised that the surgeons did not show you the Mickey doll so you could see exactly what to expect. Sorry it is not what you were thinking it was. Did they give you the gtube video to watch before hand? That is one of the best learning tools!

RN / CPNP Dawn