Wednesday, March 4, 2009

jonah - wednesday, march 4th

SO much to report today... so little time.

The ENT will only be coming if Jonah shows signs of respiratory problems. I guess he feels that if Jonah's breathing is good and he's showing no signs of respiratory constriction, he'd rather not perform anymore procedures on him than are necessary.

They did start him on Zantac per my (your) suggestions... just in case he is having some acid reflux problems and his throat is in pain.

They told me today that they were going to put in a Transpyloric tube (that would run from his nose into his lower stomach), but as they were saying this, the attending doctor came in, who had just spoken with the EB specialist at Vanderbilt (Dr. Fine) who said they should NOT do that. My guess is that he'll end up with a G-tube before it's all over. And per many of you, that's not necessarily a bad thing. I was just hoping Jonah would get to stay out of the OR.

They've started a PICC line in his arm (that they've secured somehow without tape) so Jonah can get more nutrients. They are really getting concerned about his nutrients, and this will help a lot until he can get whatever feeding tube they decide on. They are putting hyporel in his tube which should give him a lot more of what he needs.

The bad news today is that Jonah's white blood cell count is down. For adults, when we get sick, our levels go up, but for a baby the count goes down. This could indicate that he's getting an infection. They've started him back on antibiotics. They also took another blood culture today (I'm assuming we'll know the results of that tomorrow), and he's been put under "neutropenic precautions" (gloves, gowns, masks). Please, God, no infection.

They have stopped the humidity in his bed. Apparently his temperature has become stable on his own. I'm thankful for this, since the humidity leads to more skin breakdown.

On the dermatology front, they will have to do additional biopsies on Jonah. They were hoping to be able to use the same tissue from his first biopsy, but there are special liquids they have to be kept in for the kind of tests they need to do, so those are being overnighted here tonight. One sample will be sent to Houston for a certain type of test and the other to Buffalo. We won't know a specific diagnosis or prognosis for two weeks. Please, God, patience.

We were interviewed at 2:00 by the Winston-Salem journal for an article about Jonah, EB, and the social networking aspect of all this - the blog blowing up like it has and his facebook prayer group which now has over 2,000 prayer warriors. I don' t even know 2,000 people.

Sorry it has taken me so long to post - today has been an insane day! We've gotten so much information, but it has been busy and a little overwhelming to say the least.

Please pray for Jonah.
- that he won't have an infection or that if he does, that he reacts well to the antibiotics and will be restored quickly.
- that the PICC line will provide the nutrients he needs until the final decision is made about the feeding tube, and that it will not do too much damage to his little arm
- and that he will handle the biopsies well tomorrow

He's so strong, but I wonder sometimes how much one little body can take.

Today's shout-outs:

- Deac, our dog, who finally pooped after several days of constipation (Grandaddy - our Deac-sitter was so worried). Who knew canned pumpkin would do the trick?

- Dr. Ali (our WONDERFUL dermatologist) who is going way out of her way to contact specialists in Vanderbilt and Chapel Hill, pay special attention to our sweet Jonah, has to leave tomorrow afternoon for a dermatology conference but gave me her cell phone number and told me to call ANY time this weekend if I had any questions. "Really, ANY time. And please, call me by my first name." (Insert big hug here)

- Dr. Furlong (our WONDERFUL neonatologist) who is so gracious, humble and kind; who listens to all my (your) recommendations and suggestions; who instituted mepilex bandages, the Haberman nipple, and Zantac per your comments. What a blessing to have such a great doctor who is most concerned with Jonah's well-being and that he gets the greatest care and has no ego about it whatsoever. She even spent lots of time with the Journal interviewer today and us, explaining (once again) his disorder and his treatment to her. All the doctors here are so great. Jonah's in great hands.

Thank you for your continued love and support. I love reading your comments and prayers for Jonah. Please don't expect much of a post until the evening. Life is so crazy around here. But hey, for you Pacific coasters, I'm right on time!

65 comments:

Domestically Disabled Girl said...

I continue to pray for your family for strength- you have an amazing little man there..

j3k said...

I have my prayer warriors still going strong! We started over a week ago before you gave birth and we are still going strong! I have fallen in love with you and your family and I talk about you daily as if you were mine! I share your blog info with everyone because I want everyone to pray for you and Jonah! Please god take care of our baby Jonah, we have all fallen in love with this child! I know he is a child of god but we want him here with us for at least 80 years first!! (sorry don't mean to be selfish asking for 80 years :)

Hearts and Hugs
Marie

Melissa said...

Oh thank you, God! I have checked this blog probably 20 times today and have been so worried when I didn't see an update. You guys, this stuff all hits so close to home for me, and I know from experience what you're feeling now...and it makes me pray even harder for you all. I honestly believe that all the prayers that Bryson received when he was a baby are a major part of why he is here with us today as a teenager. I hope and pray that in 16 years you guys will be able to say the exact same words about Jonah. Hang in there, love your baby, and make sure that in all the chaos you take time for each other, too. I will be checking this blog every chance I get...and praying that each update is better and better...

Twin Mommy said...

We are praying for your family & sweet Jonah. What a fighter he is!!!

hgodwin said...

Still praying STRONG here in Georgia! I have to say, He actually looks better today in my opinion! How about we don't even accept the word infections! Let's start claiming baby Jonah is INFECTION FREE IN JESUS NAME!

gooddog said...

I found you through the YL world and want you to know I am praying for your sweet boy. I am enamored by his pictures and love hearing your faith through your blog updates. Be assured, in this season of lent and of life, that His mercies are new every morning. Great is His faithfulness.

Emily said...

I am praying for you every moment I think of you (which is a lot)!

Jenny said...

All my prayers and love are coming to you from downunder in Australia!, I found you yesterday and have fallen in love with you all! - I woke early this morning to catch up on Jonah! He really is such a gorgeous little fella! Take care and will keep Jonah lifted to the Lord in prayer!
biggest hugs and kisses to you all - Jenny

Nene said...

My thoughts and prayers are being sent your way...Peace be with you!

michelestaples said...

Still praying for you and yours. But I had to tell you how much you have inspired me through you never ending faith in God through all this. As a mom to four little girls, it reminds me of what is truly important in life. And if you can make it through your situation, able to find joy, still put your faith in God, Then I can manage four little girls at home. I also had to tell you that you look amazing for just having a baby!

littleleaps said...

Patrice, We continue to pray for God to completely heal Jonah.

Will Jonah be getting TPN through his Picc line? Lydia gained weight on TPN so I know it is possible.

Praying that he stays clear from infection and that his CBC is normal soon.

Niki said...

I have been following daily, and I was so glad to see that his skin is getting better!!! His little tummy is so cute! I also wanted to let you know that I pray daily for you and Matt and Jonah. May God give you all the strength and patience, and peace to help you through the road ahead. He is such a little fighter (is daddy a fan of wrestling???) what an amazing little guy and total cutie patootie!!!

Cristina Bradshaw said...

Ben at Dinner - "MOM we forgot to pray for Baby Jonah."

"Thank you for Jesus, thank you for God, thank you for Baby Jonah feels better." Amen.

Prayer warriors come in all sizes:)

"Mom, can I see Baby Jonah."
I granted his request and we logged on and were glad to see the latest post. My whole family, my church, and my students are all praying for you, Matt and Jonah. The Facebook Group has been such a testimony to see the Lord at work. So many people are on their knees in prayer for God's perfect creation in Jonah.

Psalm 139:13-14 For you formed my inward parts;you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.Wonderful are your works;my soul knows it very well.
Colossians 1:16-17 For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.

Just as God has given you a blessing in Jonah, he has given Jonah a wonderful gift in you and Matt. Your strength and faith as a couple is a great example of Christ-like character to the world.

BreezieGirl said...

Thoughts and prayers (especially for good days, patience, and miracles) from San Diego...

Lesley said...

Patrice and Matt,
We were told your story through a facebook friend.
You must feel you are caught in a whirlwind! So much happening- sooo much to absorb and process. I am Lesley Mom to a 9 year old with EB. EB is such a devastating diagnosis. My heart sooo goes out to you and we will lift you in prayer. When you are ready- or maybe a loved one can look at these for you- ebinfoworld.com and ebkids.org
will be most helpful to you. I remember just trying to get through the day-trying to get a breath without feeling like crying- and our daughter turned out not to be as severe. Sure looks to me like you have made the right connections already and are doing all the best things for precious Jonah. Prayer in Jesus made all the difference in the world for us- we know it will for you too.
We will stay in touch and be praying for you all.
With His love, Lesley and Jim Minkey

Anonymous said...

That is great that your doctors are so receptive to all of your ideas and suggestions. Praying that the least evasive procedure be performed to solve Jonah's feeding problems; no infections for Jonah; and patience for Jonah's mommy and daddy (and the ability to absorb and digest all this new information given to you). Jonah is a strong fighter and sooo cute, too!

Gail
Annapolis, MD

Tiffany said...

My heart breaks to hear this about your precious baby boy! I just want you to know that i too will be praying for him and God's mighty power to heal him! Thanks for sharing your time and prayer request

Tiffany
Dallas, TX
'

Anonymous said...

Hi,
I'm glad to see that your doctors are great and willing to do whatever it takes to help Jonah. That makes it so nice. I was wondering if you get to hold him? When my 14 year old son was born with recessive dystrophic EB, we held him a lot. We just had to hold him on something that wouldn't cause a blister or tear his skin. He was not in a bed like in the photos, he was in a crib and also in an isolation room in the NICU. We were able to play music in there and have those things on the side of the crib that babies like to look at, etc. He was in the hospital for a month. After being at home a month, our house flooded! But we were fine through it all.
Anyway, I'm definitely praying for Jonah and that you will enjoy him as much as we have enjoyed Weston. He is definitely a gift to our family.
Don't forget about ebfriends.ning.com , there is a search bar and you can find a lot of information on there (in your spare time, haha) You can ask questions and have many answers in no time. You can see LOTS of pictures of EB kids and their families. It's sort of like myspace for people that are affected by EB in any way. Have a restful evening and I hope everything tomorrow is the greatest!
Dana Zucha
dzucha@aol.com

Anonymous said...

My daughter, Talia, survived Junctional EB for only 4 months. She would have been 22 now. Much has changed in the care of EB patients. She had breathing difficulties and so she slept on a pad that would sound an alarm if she stopped breathing. We fed her fresh goats milk which was the only thing she gained weight on, it didn't cause mucus in her throat. Before long you will know how to care for Jonah better than anyone. He is lucky to have parents who will fight for him. I'm glad to see that you can see small joys and still count your blessings. My thoughts and prayers are with all of you, Deb

Maryellen said...

Your sweet baby boy was on my heart and mind all day today. Every time the Lord brought him to mind I said a little prayer.
I've sent your blog to my friends to lift him in prayer also.
Blessings, Maryellen

Nanette said...

Jonah is so precious.
Praying for you all in Texas.

Anonymous said...

Praying for Baby Jonah. I know how scary the NICU can be at times and how exhausting. He is beautiful! Know that there are many people praying for your family!
Ashley in Alabama

avbernat said...

Sweet Jonah you are sooooo cute. I hope that you'll take in as many nutrients as you can so you can be strong and fight those nasty infections if they should come. Keep the faith and know that there are literally thousands of people out here just praying and loving on you. We are a very lucky group of people to know who you are and know that there is a medical team who loves on you as much your mommy and daddy. Praying for a wonderful outcome. The Bernat Boys!

Julie said...

Praying for you and your sweet little Jonah. His pictures make me smile - he's so adorable!!!

Lauren said...

a shout out for deac's poop? he'd be so proud!

on a more serious note, i continue to pray that jonah resists infection. God will watch over him and make him strong.

and that's just awesome about the newspaper. let us know when it runs!

TOSHeidi said...

I found your blog through a friends - seems the news of Jonah is circulating in a big way! I have posted the prayer button on my blog as well.
I really have no words to say - but I'm amazed by the outpouring of love and concern! How wonderful. There is definitely power in numbers and Jonah is being lifted up around the world!

just jamie said...

Joining in on the prayers for your sweet baby boy. His strength (and yours) is inspirational. Keep going!

Anonymous said...

My prayers will be with you, Matt and Jonah tomorrow as he undergoes his biopsies. Prayers for the PICC line to work and for a resolution to his feeding problems. Many thanks and prayers to your dermatologist's kindness and willingness to reach out to other Dr's who know how to treat EB. I realize I only know of Jonah through your blog but I want you to know I am thinking of him throughout the day and lifting him up in prayer to Jesus.

Anonymous said...

I received your blog from a relative...and am compelled to lift you up in prayers for healing, strength and faith. I teach a child with EB. I am going to ask him mom to check this out too...just in case she can offer advice. Praise be to God.

Janel Waters said...

what a long busy day! I'm glad that you have such great doctors!

As always, you will be in my thoughts and prayers every minute of every day!

Janel

Kelli said...

Praying for your specific requests! Jonah is so beautiful!!

Stephanie D said...

Praying for you all and Jonah!!! Somehow I stumbled on your blog and I am right nearby! It is amazing how God uses technology, to bring those who are far away and close nearby to be a part of Jonah's story! What blessing that we have Brenner's in W-S!

Brandi said...

I am praying that there is no infection! And that the biopsy come back with some good news for you guys.

Dear God,
Please keep this family safe. Bring them peace God. Peace that only can provide. They need extra love right now, and some really good news. Please Lord don't let little Jonah have an infection! We thank you Lord for bringing Jonah's body temp up. Give the doctors wisdom Lord. In Your holy name we pray! Amen.

Laura said...

Praying for Jonah's healing, for you to have support, love, patience and guidance through this most trying situation, and for Jonah's doctors & nurses - that they may continue to treat you all with such loving kindness - the kind that is ordained by God. You'll all continue to be in our prayers here!

SW WI MOMMY

JAMBA said...

I'm on your FB prayer page and have been following your blog since Jonah's birth. I just wanted to let you know that you and your family and your sweet, precious, adorable 2nd born are all in my thoughts and prayers. I check your blog several times a day to see how Jonah's doing. I think Gabe is taking his job as big brother very seriously, as it seems Jonah has a very special angel looking out for him.
Praying strong in Ohio!

cpu4 said...

I heard about your story from my cousin Dave and his wife Meredith, friends of Kim (Matt's sister?). Every update brings tears to my eyes, but I keep reading every day. It is making me appreciate my two children even more. I am praying for Jonah, and have asked my moms' group to do the same. I hope each of these notes is an encouragement to you, that God has drawn so many people together to pray for you and your son.

Elizabeth
College Station, TX

Amber said...

Hi. I have heard some fantastic reviews about the neonatologists in Winston. We live in Lenoir, but I traveled to Winston for fertility treatments. I still see my doctor there on a regular basis, so if you need anything at all... please let me know. And we are praying for Jonah! The NICU can be so scary, but it sounds like they are taking good care of you. I was a nervous wreck when my son was in the NICU. I am praying for Jonah's healing and your peace in the process. God bless you!

"Trust int he Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him, and He will direct your paths." -Prov. 3:5-6

I clung to that scripture so many times when my baby was sick... I pray that it will be a comfort to you as well.

Tracy said...

I am glad that things are starting to fall into place and I am SO glad that the doctors are listening to the suggestions of others!! Just wanted to tell you that we went through 2 biopsies before we found out. The first one they did not get a good enough skin sample, so we had to have a second one which was also sent to Houston. And I told them that if they messed that one up that I was going to take a biopsy on the person that messed it up!! HA!! I was tired of them poking and holding down my baby!! We know for sure that my daughter has Dystrophic EB, but she is VERY mild. Hopefully this year we will find out weather it is Recessive or Dominant which will be done through genetic testing. I will continue to pray for Jonah and for you and your husband! I know how hard this is....

Cathy said...

Jonah looks so great!!! I am still on my knees praying for you all and have spread the word for prayer to any and all that will listen!
Stay Strong!!

AnAmericanGirl said...

Your baby boy is so adorable. I will certainly keep him and you in my prayers. :)

God bless
Love,
Hannah

Kelly said...

Praying for you and that sweet little man of yours! God bless you all!!!

Chris Hilton said...

For those following this who have actually experienced the privilege of visiting with Jonah. I have started a discussion on the facebook prayer group page for us to share our impressions. The link to the page is at the top right corner of this blog. The discussion area is below the Members area on the prayer book page. Click on “Visited with Jonah” and join me in sharing your POSITIVE impressions. If you aren’t a facebook member you will need to join to make an entry but that’s not any big deal and you will be given that opportunity when you click on the link.

Mandy said...

Hi Williams family. Our church prayed for Jonah tonight. I sent out this website to some friends who sent it to all their family and friends.

We will continue to pray day after day. Thank you for the update!

Praying for your little blessing =)

Mandy
in Kentucky
thekinghome.wordpress.com

The Crims said...

Matt and Patrice,
We're still praying and so is everyone we know. I sent my sister in Raleigh a link to your blog which adds two more huge congregations of prayer warriors.
Thanks so much for your updates.

Much love,
The Crims

Dores said...

Sweet baby Jonah and your family have been in my thoughts and prayers! Sending my warm love to your family and baby jonah! Hugs!!!

Isaac and Mommy said...

I just wanted to let you know that we continue to pray for your family and Jonah. We pray that God's love,strength and mercy are upon you now and always. Take care.

jennifer said...

I have just found out about your beautiful boy. He looks like a real fighter. Our whole family is going to pray for him every day. Stay strong in Him and rest in His love for your family. All our love.

Jamie said...

Willams Family,
My best friend Melissa (who works at TR with Matt) told me of your beautiful son's sickness. I just wanted you to know that you and your son are in my prayers as well as the prayers of my children. My youngest son was born premature and was in NIC for 10 days. I can sympathize with your pain and I do so hope that all turns out well for your family.
God Bless you Jonah, for He Blessed your family with you.

God Speed,
Jamie Martin

Watts Family said...

I find myself thinking of Jonah all day long. He is in my prayers along with those all over the country. Get some rest and blow him a kiss for us in Texas!
Many Blessings,

Amanda

Kelley and Jack Stack said...

Today at 5:15 Mass at St. Leo's the first reading was from The Book of Jonah and The Gospel spoke of Jonah; of course, we thought of and continued our prayers for your Baby Jonah.

May God bless you and all those involved in his care!

With peace,
Kelley and Jack Stack
Winston-Salem

Anonymous said...

Praying, praying, praying for NO infection! Praying for the Lord to comfort him and for him not to be in pain. Praying for a miracle of healing for sweet Jonah! Your family has been on my mind and in my prayers day and night. Praise God for all of the awesome doctors, nurses, and specialists that God has brought to help your precious son. Praying for patience for you as you wait for results to come back.

Hugs,
Katy (CA)

Angie said...

Just wanted you to know our entire women's Bible Study group at our church tonight had special prayer for little Jonah. I have witnessed miracles in the lives of little ones. WE are BELIEVING GOD for Jonah!

God bless you! P.S.--don't trouble yourself to come over to our place-(blog)--really--spend your time and focus on HIM and him.

Beth.. One Blessed Nana said...

Patrice - I am praying for your sweet little boy and your family. Praise God that you have encountered doctors who are caring and understanding. God placed you right where you needed to be.

I will be lifting you up daily.

In Him
Beth Herring

Cara McLeod said...

I am praying for you and your precious little Jonah. God bless you and keep you.

Anonymous said...

I will pray for you beautiful baby boy and your family. May god bless you all.

Anonymous said...

Praying for precious Jonah! A friend told me yesterday that treatment for EB is more advanced in Germany, because it's more prevalent in people of German descent. There are ointments, special bandages, etc., used there which seem to work very well.
Hope that helps!

Angie Davis said...

I've been thinking about and praying so much for this sweet little guy that I feel like I know him. I wish I could hold and kiss him, so I CANNOT FATHOM how much you feel this yourselves.

Praying for healing. Praying for many beautiful and happy times with Jonah to come. Praying for the Lord's goodness, mercy, and grace to be evident in and throughout your lives (his work in you has been evident to me. Thank you for giving the time and energy to keep this up!)~

Angie (friend of Kim and Andrew)

Sharlene said...

I just wanted to let you know I am praying for Jonah. Stay strong and hold on to your faith.

Cathie said...

Praying and still praying...and then some more. You are never far from my thoughts...and how cool that God is getting so much glory! Jonah has had more purpose in his few days here on earth than many have in a lifetime. Wow!
Praying God's strength for you all and rest - and peace.

Anonymous said...

I normally don't leave comments on a stranger's blog, however, I want you to know that I am praying for your family and all the caregivers who are helping Jonah many times a day. God is holding you all safely in his hands.

Anonymous said...

I've been a patient in hospitals MANY times and I am sure you know you have an EXCELLENT team of Drs there! I HAVE NEVER HEARD OF DOCTORS BEEN AS GOOD AS YOURS--flexible to your suggestions/ideas(!!) AND compassionate. YOU ARE BLESSED!!!

(But I'm sure you know that.)

Julie
Searcy, AR

kathleen said...

I know we don't know one another, but my heart and thoughts go out to you and your sweet family. Stay strong all of you! We are thinking of you and sending healing thoughts.

karina said...

Patrice, I continue to follow Jonah's story, and pray for your sweet family. The poems you posted on Mother's Day last year after Gabe's death meant so much to me when we faced the loss of my great-nephew, Mason. I just feel such a connection to you and long for you and Matt to get a miracle for Jonah, for him to be healthy and healed of the EB.

I know that God will reveal Himself to you in these hard days and even moreso when you can look back on these really hard days down the road. God is good all the time.

Jonah is a beautiful baby boy! Thanks for sharing him with us.

Roslyn Dahl said...

Hello!

I found your blog and wanted to let you know about the Oley Foundation -- should Jonah end up going home on tube or IV feeding.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

In particular you might be interested in the

• Meet Patients Section (try all three links)
http://www.oley.org/volunteers.html
http://www.oley.org/call.html
http://www.oley.org/forum.htm

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY

Carol said...

Just wanted to let you know, I pasted your link onto my site, so more prayers are being said on Jonah's behalf. You guys are doing awesome! Carol