Saturday, February 28, 2009

dr. block gets a hug

Jonah seems stable for the time being. They took him off his constant pain medication drip, because the overload is apparently what made him stop breathing earlier today. He has been okay ever since. One of the doctor's who saved his life this afternoon, Dr. Block, is one of the most caring and compassionate people I've ever met. He did an amazing job restoring Jonah's breathing while being very careful with his fragile state. After having an oxygen mask, suction etc, Jonah has very few new blisters to show for it all.

And about an hour ago, after Peyton and I had gone back to see him for some great eye-open time, we happened to pass Dr. Block on the way out the door. I gave him a huge hug and thanked him for saving my little boy's life. And he hugged me so tight back. He then asked me how we were doing, let me cry a little, and talked to us for about 20 minutes, helping me understand EB more and some of the diagnosis possibilities. He said that he was trained by some of the first neonatalologists, and that one great woman, who died in her nineties recently, always told him to think about how the family feels and whether or not the parents have gotten to hold their child. He said, "I know how hard this must be on you." And he meant it. He told us a little about the three types and reassured us that we can't make any assumptions about what type Jonah may have. He doesn't think it will be as long as three weeks before we find out a more specific diagnosis. I am very concerned that Jonah is developing new blisters, just from lying in bed, but Dr. Block says this is normal for EVERY type of EB. He said that the Simplex version is the least serious, and that most times, kids can outgrow this and live symptom free - so that version would be great news! However, so many people have left comments about more severe versions of the disorder, I'm going to bed hopeful - people who are married, have kids, or who ARE kids who wrestle with their daddies! Thank you guys so much. I can't wait til I have time to look at all the great sites you've mentioned for ideas and support!

One new concern tonight is that we have tried twice to bottle feed Jonah, and he won't even attempt to suck at all (whereas he was sucking on a paci like a mad man yesterday). This could be just because he's drugged up and tired, but there is some concern that he's developed blisters in his mouth and throat (an indicator of one of the more severe versions of EB), and that he won't suck because he's hurting. Hopefully an ENT and lung doctor will examine him tomorrow to see how he looks from mouth to bottom.


So, specific prayer requests for tonight (or tomorrow for those of you who aren't on a Holy Spirit High and will have the benefit of Ambien to help you knock yourself out):


- that Jonah will have the Simplex version of EB
- that his mouth and throat look healthy and whole
- that he is not in very much pain now that he is on lower doses of pain meds
- that his little body resists infection (STILL the biggest concern and greatest danger)


Here are a couple pics of our attempts to feed our little man. I got to lift his head by putting my hand under the pad he's lying on. The weight of his head in my hand was the best thing to happen all day! I sort of got to hold him. Hooray!



Thanks so much for continuing to love on us and lift our Jonah up in prayer! We know God can do miracles, and Jonah can be healed.

51 comments:

Anonymous said...

Hi, I got a link to your blog from 'Kelly's Korner', and I just wanted you to know that my husband and I are praying for you and sweet Jonah. Praying for God's healing touch upon your baby boy.

Love,
Katy (in California)

j3k said...

I have been praying for you for days now and my prayers will continue. I catch myself driving down the road deep in thought about you and your family! The pictures are amazing. The tears are streaming down my face for you. My prayers will continue to come your way!

Hugs and Hearts
Marie Wimsett

Jessica said...

Praying so hard for you and your baby! I know the Lord will wrap His loving arms arms around you and offer His peace. Your son looks just as sweet as pie! : )

Jessica in Arkansas

cecemeetsworld said...

I read Angie's blog, MckMomma, and many others... but got an email from a personal prayer warrior friend.. so your prayer needs are being met by a far greater number than you can imagine. I am praying and adding your prayer needs to my blog and will have my husband bring up a special moment of prayer tomorrow while he preaches. I will pray daily for God to rock your world.

CeCe Garrett

Jessie said...

Dr. Block deserves lots of hugs! And so do you all! I'm praying that your little Jonah will be healed and that God will bless you all!

avbernat said...

Hi, I'm a new reader from Kelly's blog. Just wanted to let you know that I'll be praying for little Jonah out here in California and so will my three little boys before they sleep.

Jessica Latshaw said...

Hey--came over here from MckMamma's site--just want you to know that I am praying for your Jonah...

Emily Parker said...

Praying for God's healing touch on your beautiful baby boy tonight.

Pam D said...

I came here from MckMama's, and I've spent a few minutes (or more) reading your entries. Both of your boys are absolutely beautiful, just like your faith. I'm praying for the simplex form of EB, and for God to bring your precious Jonah through this trial and to your home, where he belongs. May your arms soon be filled with the weight of your sweet boy.
Praying...

Jennifer McGregor said...

Just "came across" your blog... stranger-girl in Tampa is praying for you and your little family.

Brianna @ Heart(h) Management said...

Dear Williams Family. You can add me and my family to your list of those lifting you up before our Father. We'll be praying continually for you and Jonah. May our Lord be glorified!

Anonymous said...

Dear Patrice (& Matt):
Thanks for the update...and the ways to pray more specifically!
And what an awesome story about Dr. Block and getting to "hold" sweet baby Jonah!
Still praying and sending much love your way!
Aimee Pence

The Bodman Family said...

You don't know me but I saw your site listed on MckMama's twitter and paid a visit. I can't imagine how heartbreaking it must be. I pray for Jonah and for peach that may come to your family. I also pray that God will so mercy to your son and "set him free" from his "whale" just like God did for Jonah in the Bible. We are praying for you.

Kristie said...

It don't matter how I got here. Just wanted you to know simply that I am praying for your Jonah! He is such a miracle already. He has a mission to do here on earth.

Kristie

Colette said...

Praying for you all xxx

Buttercup said...

Found my way from Kelly's blog. Prayers for good health for Jonah and sending hugs and prayers to all of you!

Laura said...

Thank you for taking the time to update us. He really is cute and looks so much like you, Patrice. You guys are continually in my thoughts and prayers.

Lauren said...

i think it would be awesome if we could create a button for people to put on blogs, but i have no clue how to do it. do you think peyton would be willing to give that a shot?

love the updates and am wishing so much that i could still be right there with you guys. i'm there with you in spirit, though, and i cannot wait to hear the updates over the next couple of weeks and share his story today at church.

Lynnette Kraft said...

I want you to know that I'm praying for all of you! I've been in a similiar boat - my daughter was diagnosed with very serious heart problems when I was pregnant and everything was so uncertain for a time.

I know what you mean about not knowing how to pray - my prayers for my daughter when she was 9 months old and in the hospital after open heart surgery were simply "Please Lord, Please Lord..." He knew my heart.

Jonah is precious.
Love,
Lynnette

Miss Cook said...

all my love & prayers! (i've been nonstop bugging kathryn for updates...hopefully she still loves me too, haha). please don't think i'm lame that i post as Miss Cook - it's a teacher thing, which i'm sure you understand :-) anyway, i'm sure you know everything else i could have to say, so i'm just saying love :-)

Debbie said...

Good Morning... Praying that baby Jonah has a restful night. Please know that we are storming the heavens with prayers for him.

God bless you


Debbie/Angel_Wings

Lorri said...

Bless you dear little family. Praying for you..saw the note on McMamma.

The Lord your God is with you, He is mighty to save, He will rejoice over you with singing, He will quiet you with His Love.

Love, Lorri S....mom who has been around the hospital enough to know you wish you were all HOME!

Sara said...

I am glad he is off the strong pain meds, as they have lots of side effect as you have already seen.

EB Simplex can be VERY severe the first year of life. I spent 6 weeks in the NICU after I was born. My daughter only spend 13 days but by the time she was 4 months old she was missing 75% on the skin on her body. Typically, but not always, the dominant forms of EB tend to start out severe and get milder as the child gets older. And recessive forms tend to start out mild and them get worse. But that's not always the case. EB is truly an individual condition and no two people are the same, even within the same family.

Tracy said...

Hi Patrice.. I found your blog through mycharmingkids, and I wanted to tell you that I am so sorry.. BUT I also wanted to tell you that my little girl was born in August and she also has EB. There are some REALLY amazing websites with lots of information for you. ebfriends.ning.com is a great website where you can talk with other parents, grandparents, etc.. of children who have EB and every one on there is SO wonderful and they are loaded with information. My daugther has Dystrophic EB so I go to www.debra.org a lot for information. And they have information on all types of EB and lots of it!! Please feel free to e-mail me with ANY questions you may have.. tstaats@wildblue.net

Tracy

Melissa said...

I am keeping you and your son in my thoughts and prayers. I hope that he has the least severe form of EB. *Big hugs*

I'm The Momma, That's Why! said...

Saw MckMama's twitter and came immediately to your blog last night. Did lots of reading and crying (and some smiling, too).

Then did lots and lots of praying. Your pictures are just beautiful - of both your little boys. Will continue to pray not only for Jonah and all his struggles but also for your family, the doctors and everyone involved in caring for your new little doll!

Hang in there - we all know HE will do what is right. Somehow we just have to find the faith and strength to hold onto that!

Grannie in Florida

Hope said...

I'm praying for your precious son! Huge hugs to you, I know you need it.

Happy and tired said...

Found your blog from Mckmamma. Your precious boy is in my prayers. May God heal him and give you strength and peace. My heart aches for you. Please know I am on my knees in prayer for you all.

Amy said...

I also found your link from "Kelly's Korner." I am in social work and know of children who have EB; some with the milder case and one with the more severe. They go to school and do as many normal childhood things as any other kids do. They do have some special services because of needing dressing changes to their blisters, etc. but are intelligent, social and their parents have them try to do all activities other kids get to do with some exceptions like playing outdoors when it's too hot, etc. It's easy for me to say because my child does not have EB, but I think if you can find some other parents who are going through this a little longer than you, you will find good support which will hopefully make you feel better about this special baby God has given you to care for. I cannot give you any other information about the children I know for privacy protection, but I will pray for you and that your new baby gets through these tough times and you can take him home really soon.

Sincerely,
Amy

Millie said...

Wow, I'm so sorry you guys and Jonah are going through this!! I know nothing I say will make your pain better, but know that I am praying for all of you. As I said before, I know what it is like to see your child struggle, and I'm not only praying for Jonah, but for you and your husband also.
God bless,
Millie and Colin-HLHS

The Gieses said...

Williams family, I found your blog through Mckmama but live in Winston-Salem. We know Paul Barclay through YL and he actually called my medical professional husband Friday night telling us about you guys. We feel connected to you by just living in the same town and knowing some of the same people. You are on our hearts and minds and we are praying for you all unceasingly.

~*Michelle*~ said...

keeping sweet Jonah in my constant prayers.....

May God lay His healing hands on his precious body and bring a miraculous healing.

Peace
*~Michelle~*

Nysewanders said...

I got to your page from Little Man and I just want you to know that we are standing before the throne of our God who heals, pleading for sweet Jonah's life and healing. Hope is the very best.

Bekah in GA

Joanna said...

Just wanted to let you know that my whole church prayed for you all today! I really believe that God has his you all in the palm of his hands.

Marie said...

I want you to know that many many people are praying for your son and your family. My grandson has EB and is 18 months old. I know the fear and worry you are going through right now with all the uncertainty and my heart goes out to you. Please know that there are many organizations and websites to help you get the answers you need.

I found the best website for answering questions was Debra.org. They are great about giving the facts. Each case is different and we all have our own stories.

Know that God is surely listening to all of our prayers for Jonah and you. We will continue to keep you in our prayers.

I know you don't know me but I still am sending you a great big Grandma hug and keep in mind that all of us are sending hugs and prayers daily for your family

Anonymous said...

I was one of the fortunate nurses at Forsyth that got to meet your sweet Jonah before he went to Baptist. I have been thinking about your family constantly and I am so glad I found a link to your blog on facebook. Jonah is a beautiful baby! Your husband told me all about Gabe, he told me that Jonah was going to play basketball, and every cute little feature we talked about on Jonah he said, "he got that from his mom." Jonah is so lucky to have such wonderful parents, and you have lots of people praying for your whole family. Kisses and (gentle)hugs to Jonah, I'll be thinking about you. Lauren Dalton

Flip-flop Mama said...

I said a prayer for you and Jonah. May you feel God's peace. I will continue to pray for healing.

Emily said...

Praying for you guys in this difficult time. It sounds like Jonah has some of the best doctors ever, and we know he has THE Great Physician on his side too.

Anonymous said...

Hey there, Patrice...
Just wanted you to know what a sweet service we had today at Pinedale! Steve Weeks came forward in 9:30 service and stood in the gap for prayer for you guys and Jon Hauser got a little choked up when asking for prayer for you all...God moved in worship and when we went to Sunday school many were interested in what was going on so I forwarded your blog address to everyone...there are SOOOO many people lifting you all up and I do hope you feel it on this cold, rainy afternoon!
Much love and prayers to you, Matt & sweet baby Jonah. Keep posting those pics on your blog I have 6 pages of your scrapbook done - to work on page 7 tonight.
Sorry I was so long-winded - consider it a GREAT BIG HUG that I cannot share in person:)
Aimee Pence

Kathy said...

You are in my prayers. The young adult class at Jericho prayed for you and your family today. Kathy C - Mocksville

cara said...

PRAYING for you guys! You have a beautiful baby boy, and I pray you get to hold him soon. Just imagine Jesus holding him for you right now, healing him. Your first baby is just beautiful, too. What an amazing family.
cara

Amy said...

Matt, Patrice, Gabe, and Jonah,
I love you guys so very much! Please know that I am praying for you as well as pretty much everyone who knows you or about you. Mama Joyce sends huge hugs from Hickory, and Britt has you guys in his thoughts. Jonah, you're just cute as a bug! Please stay strong for your Mama & Daddy.
Let me know if you need anything at all!
<3 Love, Amy Todd <3

michelestaples said...

My heart and prayers go out to you, your husband and your adorable baby.

Kelly said...

Saying prayers! Hugs and XOXO!!!

Karyn said...

I learned about this last night and have had all of you in my prayers ever since. I know many others from GHS are praying for you as well. Please let us know if you need anything.

Love,
K and J

Lauren said...

I just came across your blog thru Kelly's Korner, and wanted to let you know that I am praying for you guys. I am going though a really tough time right now - just lost my quads at 22 weeks, and still hospitalized - so I know how nice it is to get all the random comments from strangers letting you know that you are being prayed for.

Take Care,
Lauren
laurensblog.greenfamily.net

Erin said...

Linked to your blog from MckMama's-- I'm so sorry for all that you're going through. I will definitely be praying for a miracle for Jonah.
God Bless,
Erin

Jennifer said...

Hey Williams Family
I got your information from a sunday school friend (Anne Leigh). I work as a NICU nurse in birmingham, Al and can tell you that our Father is a God of Miracels, Healing and Hope. I have cared for children with EB and my heart hurst for your family. i will pray without ceasing for you.

Anonymous said...

I've just been linked to your page by a friend who thought of me, due to my past experience with EB. I am a NICU nurse who managed a patient with EB for four months while she was in our NICU. First off, I'm so sorry. My heart truly goes out to you and your family, EB is one of the most challenging and heart-renching diagnosis I've encountered. I have read your recent posts and it all sounds so familiar. We used our palliative care team to help manage pain, using Oral Morphine to help with dressing changes instead of stronger IV forms. We also used plain vaseline gauze, drenched with vaseline for the dressings to be intact with the skin. I see that your hospital is using a yellow dressing that has antibacterial cream on it.. this can allow for antibiotic resistance should your little guy get an infection... I have plenty more information if you'd like it. Feel free to email me, my email is ebrownosu@hotmail.com. Also, there's a great website debra.org that could be very helpful. I will keep your family in my prayers.
elizabeth

Patricia Robinson said...

What a beautiful baby, Im pat the Poet from BCC, in NMBeach, I just had a visit from my grand son You are in my prayers
-----------------------------------
God blesses us with these little boys and girls-To bring love and patience to our worlds.
But sometimes there are to be lessons learns-this is the way life turns.
We have to love the gifts God gives-and be the best as we live.
Some of us are here for a second, some for a lifetime-we need to be drinking and being thirsty with in the mind.
Sometimes the lessons are to much to bare-God wants us to take the time to love and care. By: Patricia Robinson

Cathy said...

In prayer for your sweet son! Thank you for the specific prayer request and am so thankful that you have such a caring dr.
On my knees that this little one with have the least serious type.