Friday, February 27, 2009

jonah update

I just got an update from Matt. He spoke with the doctor at Brenner's. He is 99% sure that Jonah has a genetic disorder called Epidermolysis Bullosa. He said he sees one case every other year. There are two degrees of this: severe and mild. The doctor said from looking at Jonah's lesions, he guesses he has the severe version. A biopsy will be done (I'm not sure when) to determine his severity level. If this is what he has, it affects three things: his skin, his mucus membranes, and his intestines. The two things that doctors worry about the most are infection (because he doesn't have much of his outer skin to protect him) and intestinal blockage from the sloughing of the intestines (similar to what his skin is doing). At this point, Jonah is on three sets of antibiotics, pain medication, and a sugar water drip. He does not seem to have intestinal blockage at this point. If he were to develop that, he will need surgery.

The doctor has seen kids who grow out of it for the most part as they get older, kids who have died from infection or intestinal blockage in early childhood, or people who have died from the same things in early adulthood. It does not affect his heart, lungs, kidneys, or brain.

The doctor said that this is likely what Gabe died of. He said it would not have been caught in the genetic testing we had done because that only tests for the most common things, and they assumed his skin sloughage was because he had died, not that that could have caused his death. Jonah's prognosis, at this point, depends on the severity of his case, which will be determined by the biopsy they are doing tonight. It will probably be Monday before we get the results.

There is no cure.

I'm getting a six hour pass to get out of Forsyth and go over to Baptist to see him.

I can't explain to you how our lives have turned from elation and happiness to complete heartbreak in a matter of minutes. We are both so low right now. It is so difficult to remain hopeful. This is very serious. Please continue to pray for our strength, that Jonah is the toughest baby ever, and for a miracle. Our God can do all things.

There is a possibility that it could be something else, so we just hope that this is not what it is, and that he has something much less serious.

Please keep praying.

Patrice

20 comments:

LeeAnn said...

We are still praying - lots. Thank you for the update, it helps us know what you'd like us to pray specifically for. In addition to little Jonah, we're praying for strength for you and Matt. We love you guys!

Katie said...

You know we're praying. Praying like mad. We love you so much. I know we are not there right now, but we are praying over you and Matt and Jonah. And if you want us there to pray with you, we will be there in no time.

j3k said...

My heart and prayers are with all of you! I have been praying and watching all day! I know this has to be a tough time for all of you.... I am so sorry you are having to deal with so much right now. He is beautiful and a good set of lungs from what everyone is posting :) I will continue to pray for all of you! take care of yourself Jonah needs his mommy!

Hearts and hugs

Marie

fulksfam said...

Patrice - we are praying so much. I sent an email to my parents so they can have their church praying, too. We love you so much. - Jessie

Marine Momma said...

Lots of prayers are coming your way! I'm so sorry you're having to deal with this. Love to you, Matt and little Jonah.

david & mary grace said...

Katherine Hilton passed the news of your son to our church's mailing list. Since I didn't have your email address, I'll paste my reply to her here:

Depending on which of the various types of EB he has (EBS, JEB or DEB) a bone marrow transplant may be one option for that particular disease:

http://www.startribune.com/lifestyle/health/19471139.html

In that trial, 2 brothers, both with RDEB, received a transplant of cord blood and bone marrow from their younger brother who didn't have the disease. This is one of the doctors who treated them:

http://www.med.umn.edu/peds/bmt/faculty/johnwagner/home.html

I don't know if there is an ongoing clinical trial for that procedure or how to apply if there is, but it's certainly worth looking into. :)

One Love,
David

Hilary said...

Hi. You don't know me and I don't even remember how I found your blog, but I have been reading and praying for you for sometime now. There have been other times I have wanted to leave a comment, but felt "weird" since you don't know me. But I wanted you to know that I am praying for you, your husband, sweet baby Jonah, your family and friends. I pray that you have strength, comfort and peace throughout your journey. I have prayed for baby Jonah for a few a months now, and I don't plan on quitting anytime soon. I am also putting you and your family on my Sunday School prayer list. Take care.

Jill said...

We are both with you not only in prayer but in sharing your emotions. We are sad with you. And love the three of you so much.

Cliff and jill

Renata said...

We're praying for you guys! Our God is an awesome God and we know he can do ALL things. We're praying for a miracle just like he brought Stellan and his family!

Anonymous said...

The Lord, and the Sloan's, are with you Patrice, Matt, and Jonah. You are loved. You are not alone.

Taylor Travels said...

Patrice and Matt I love you all and I weep for you at this moment. Here is my prayer for you both and Jonah.

Father of the heavenly lights, hear this prayer. You have set the stars on high and hold planets in place as witnesses to your glory and power. There is no chasm you cannot see, and no abyss that can hide from your site. This child Jonah is in the depths. And as your prophet Jonah was in the depths and you heard his cry for help, Lord I beg you to hear the prayer of your saints for this child. Father raise him up as a witness of your glorious power. Heal this disease in the presence of everyone watching so that all who hear will say that you are God, and there is nothing that you cannot do. May the healing of Jonah bring hope to the hopeless and breath fresh air of love to the lost. Father I beg you to release the hands of the devil and to send an army of angels to protect and heal this baby for your glory. Just as Elisha called for his servant to see the army of angels surrounding them on the hillside, may Patrice and Matt know that those who are with them are greater than those who are against them. You are the Almighty, the Alpha & Omega. Rise up Lord and fight for Jonah. We fall at your knees begging for the aid that we cannot give. We kneel before your awesome hand knowing that the future this child lies fully in your love. Give grace this day, and heal Jonah's wounds. Father we wish to receive blessings to this prayer because we are asking in truth of your love, your glory, your faithfulness, and your presence. Your promises do not fail, and your power never ceases. In faith that moves mountains through your son Jesus Christ.

~ Chuck Taylor

SproutACW said...

I'm praying for you guys, and especially Jonah. What a tough thing! I pray that God has many blessings and miracles ahead. I'm thankful that your family is strong in the Lord and that you have His strength to rely on.

Keith Mason said...

guys, we have never met, but I wanted to reach out to you. I'm Lauren's dad, and I'm not sure how much she has shared about my past few years, but, rest assured, I believe in the power of prayer and faith. Joy and I join with everyone else in lifting you up in our thoughts and prayers. Miracles happen--I know, because I can still enjoy life. Jonah, Patrice and Matt---be well and know you are loved by many, even those of us you have never met.

Keith Mason

Anonymous said...

Patrice -
You don't know me, but I felt compelled to leave you a message. Please do not give up hope for baby Jonah, not all the articles posted about EB are entirely correct. I am 34 with Recessive Dystrophic Epidermolysis Bullosa. I have had a very full life and am now the mother of a very active 2 1/2 year old girl.

I also personally know of 5 other adults with EB - it is NOT the death sentence that the articles claim. You are lucky that Johan may be a candidate for the clinical trial. Keep praying and keep the faith.

This will not be an easy journey, but Jonah was born for a reason and has his own purpose in life.

I will pray for you and your family! Good luck with everything!!

Kara said...

Patrice,
I have EB and I am 26 years old, though I have the simplex form of this disease which causes my skin to blister at any irritation. I just wanted to let you know that I am praying so much for you right now and your sweet boy.
God's peace be with you,
Kara

Brooke said...

I followed the link from MckMama's blog, and wanted you to know that I am praying for you and your sweet little Jonah and for his healing.

Brooke

Wendy said...

Praying for this precious baby!

Melanieshea said...

Just found your blog tonight. Praying for Jonah and you both! We serve a Mighty God that does answer prayers!!

Kelly Klostermeyer said...

You do not know me but a friend sent me your blog. 7 years ago my little girl was born with an incredibly rare skin disorder. I have tears in my eyes as I read/look...we have been there. You will be in our daily prayers. "The Lord is near to the broken hearted and saves the crushed in Spirit" Psalm 34:18 I do not know where you live, however Dr. Amy Paller in Chicago is an internatially recognized pediatric dermatologist.

Nancy said...

Oh Patrice, reading this breaks my heart for you. (You don't know me, but I will be praying for Jonah and your family.) Keep your eyes on God continually. Isaiah 40:31 is a good verse for you.