Sunday, April 12, 2009

back in the hospital

Jonah is in the hospital again. We decided last night to take him to the ER after he had an episode where he was gagging a lot and mucus was coming out his nose along with milk. That was kind of the final straw for us. He's breathing fine now, but they are going to keep us overnight, and the ENT will see him tomorrow. We'll probably push for scoping him, but I don't really know the "safe" EB way of doing things. There's an upper airway scope that they could do in the clinic, and there's a "rigid" scope that he would go to the OR for. I don't really know the difference and won't until tomorrow when we talk to the ENT. I don't know if they'll be able to talk to Dr. Elluru in Cincinnati or not before whatever procedure they decide on. It makes me nervous, but I don't really know what else to do.

I'd welcome any advice/knowledge on the whole scoping thing, especially since they may not be able to talk with the EB experts.

Anyway, I'll try to post an update once we know more, but just wanted everyone to know we're back in the hospital - this time in a private room on the pediatric floor.

Thanks for your continued prayers. Like I said before, it's all pretty overwhelming and lots of new really important things to learn... I definitely feel like I'm behind the curve. Please pray for wisdom for us as well as the doctors as they/we make decisions about where to go from here.

Oh yeah, the Easter Bunny came and brought Jonah a little basket with a duck and a rattle. It was really sweet, but Jonah slept through the whole thing, and I DIDN'T HAVE MY CAMERA!!! Dang it.

79 comments:

Stacey said...

Prayers from Statesville!

Toni :O) said...

Hang in there and I hope everything turns out okay. Prayers and hugs for strength (( )) (( )) (( )) from MI headed your way constantly!

Our family page said...

I had to check and see if you were back on here, glad I did, I will be praying all day! I hate that you are in the hospital, but at least you can have a peace now that you did what you thought was the right thing to do. Just take deep breaths, pray and leave it at His feet. Loving you through prayer. Missy in Mexico

EdwinsonFamily said...

Happy Easter.
I don't have any useful knowledge, but want to remind you that MANY are praying. Also, I'm glad that you all are getting some help at the hospital. I know you wish you weren't there with him... but just like any good mom, you were getting worn with worry. It's natural enough when you have a newborn at home for the first time. It's scary... but with all the unknowns... it's even more understandable. Praying for peace and some answers... and good news!
And... don't fear that we'll forget or not pray if you aren't up to blogging as often. You've been so kind to take the time... but give yourself permission to take a break when you need to!
Love, ~Joy (in Kansas)

Casie Creech said...

Prayers from Winterville. May Easter night bring you hope and some sound advice from good doctors. Blogging or not, we are still praying.

Kelli said...

Praying specifically for wisdom for the docs and especially for you and Matt. Hugs!

Lucy and Ethel said...

Lots of hugs and prayers from Jefferson!!!

And Joy is right - the prayers aren't about to stop because you may not post. Take care of Jonah and YOURSELVES....

Helen/'Lucy'

Jenny said...

We are praying for you all - and sending all our love your way.
Jenny,Doug and family from Perth, Downunder.

momma said...

we are praying for you - DAILY and without ceasing. even though i don't know you and your family, God has placed you all in my thoughts continually. please know that you are being covered consistently in prayers. my heart breaks for you. my children wonder why i cry over a baby we do not know - but they are learning to care for others!

(we live in nc, too)

just noticed my "word" below is bejoy! i pray that God will help you be joy through all your struggles. today is a day of joy for God's people!

Tara said...

We are praying for you. Our church prays for you all in our morning prayer time. Jonah is on the prayer list and our secretary sends out emails to ask people to pray for you. WE love you and hope your stay is short in the hospital. Happy 1st Easter mr. Jonah.

Hugs from Iowa,
Tara

Melissa said...

Happy Easter, guys...I know the hospital is not exactly where you wanted to spend it, but maybe it's where Jonah's supposed to be for the moment. I hope all goes well with the scoping and that they get through to the experts in a timely manner. If you feel up to it, please let us know what they say...or maybe ask a family member to. Hopes & prayers will be continued, as always...

{{{hugs}}}

Baby Bird said...

Praying for you all!
Love, Aimee Pence

Anonymous said...

Thank you for sharing with us. Please know that I am praying for Jonah and for you, Matt and Patrice, that God will give wisdom and strength and peace and whatever you need. I pray that God's healing power will be with Jonah. I pray for the doctors, nurses, and all the specialists who will administer to Jonah's needs. God bless you.
Sandy

Anonymous said...

Praying for some answers and peace for you all. Happy 1st Easter sweet Jonah.

Love Ya
Gina

brightleigh said...

Prayers and hugs coming your way guys. As we will be too, soon! Looking forward to seeing you in person, be it in the hospital or at home. Continuing to pray for Jonah's airway to improve as well as comfort for him. Also, praying for peace and rest for you guys. God is an awesome God, just look at what he did for us all. May he continue to bless you each day!

Much love and prayer,
The Brights

Lil' K said...

Follow your blog daily, and I say prayers for your sweet little one every night. Today, in church, I said one more hoping he would heal little Jonah. Please know someone in Texas is praying for you.

Jenny said...

I'm on my knees for Jonah and you as well! God IS in control! Praying in Kansas +

jewelrylady said...

I was worried about this possible happening....Raising Sweet Jonah up in prayer! Praying for wisdom for his medical team and peace for his sweet Mommy & Daddy!

Happy 1st Easter beautiful little man!

Anonymous said...

Happy Easter Matt, Patrice and Jonah!!! I hate that your back in the hospital but maybe you can feel a little more at ease with the "professionals" close at hand. BTW- I have some Aquaphor to send your way. I will try to get it to you this week. Love you guys and constantly praying for you.

Nathan, Lindsey & Mason

Karen said...

Praying for you daily from Lynchburg, VA... my heart goes out to you. It's ok to feel however you feel. We are lifting you up anyway. Bless you heart dear girl. You have Jesus, he knows all about it.
Amen

Shari said...

Praying for your sweet family during this time!

Anonymous said...

Prayers, prayers, prayers! Happy Easter!
Jennifer, Southeast, NC

Jess said...

Just wanted to wish Jonah a happy first Easter! Prayers are with you all.

the*4*of*us said...

Praying! I'm glad you are trusting your instinct. I'll pray that the Holy Spirit guides you through your decisions!

Anonymous said...

Happy Easter Jonah! No picture?? Where is your Aunt Shaina when you need her :) I hope you get better soon. I don't really know about scoping airways. Weston has only had something like that done for his esophagus. He used to wake up choking on phlegm and mucus too. I'm not sure if it is for the same reason?? We need to check on EB Friends and see if anyone knows about this.

Dana Zucha

Jane said...

Maybe it is the best place for Jonah right now. It will give you some peace of mind to know he is in the hands of doctors and nurses and maybe you can get a little rest. Glad to hear you are in a private room. Praying very hard for all of you and the tests tomorrow turns out ok. Thank you for letting us know what is going on. May God Bless and keep you.

Anonymous said...

Just to let you know that I am praying continuously for the 3 of you. Barbara

Les said...

Prayers from us. Once day at a time...

cinnimartz said...

Sweet Girl, just try to take one day at a time, try not to look to far in advance at the future jut look at today and tomorrow. My Son was diagnosed with DMD seven years ago, we were told he would live to be about 10 - 15 years old, he is 11 and doing amazing. If I could go back to that girl I was 7 years ago I would tell her to take it one day at a time and that the future when it arrives will not seem as grim as it is when it gets here. I hope that made sense :)

Anonymous said...

Awww, Jonah has had a really rough week. Praying the doctors are able to give you answers, and Jonah is able to breathe better and able to eat. Hang in there...you are wonderful parents!

Gail
Annapolis, MD

Anonymous said...

Our continued prayers are with you...

Erin Hingley said...

Be strong Sweet Jonah!!! You are so favored by the Lord, and such an inspiration to me and my family. Praying for wisdom, peace, patience, and ALWAYS healing.

Love always,
Erin in va
youmeandwipee.blogspot.com

Anonymous said...

Praying for Jonah hourly.....

Michelle in Va said...

Praying for you all. Praying God continues to heal Jonah. Praying for wisdom for the dr's and for you all to make the decisions that need to be made. Praying for peace and comfort for you and Matt. You all have been thru so much. Praying you will be home soon, sweet Jonah will be feeling better and you all can enjoy your beautiful family. Thank you for taking the time to keep us all informed, but please don't feel obligated, just one more worry you don't need. Please post when you can. Praying each and every day things will get easier and sweet Jonah will feel better. In Christ love, hugs and a big kiss for that sweet angel. Please take care!!! God is so good.

Sarah said...

Patrice,

I am praying for you! Also wanted to tell you that my baby at a young age made tons of choking and gagging sounds. Had awful issues eating. We took him to a feeding clinic, and it helped a lot. Some of what they will do is the same that the ENT will do, in terms of looking for mouth deformaties, but they also gave us recommendations on how best to feed the baby to help minimize the choking. It was helpful. Also by 8 weeks we noticed a big improvement. You aren't too far from that milestone.

Praying for you!

Sarah

The Burgess Family said...

Well, I cannot tell you what to do about doctors because, well, I am not one nor do I know anything about EB but the things I have read here on your blog. What I do know is how to lift you up in prayer and that is what I am doing for you.
At church this morning, we were singing Because He Lives by William Gaither and when we got to this verse, it made me think of Jonah... just thought that I would share:
"But greater still the calm assurance, This child can face uncertain days because He Lives!"

Amanda said...

May you be granted peace in all this craziness and uncertainty, fears, frustration, and joy. "Take comfort, small one, in your smallness." God's freaking huge. And He's hanging on to you and Jonah (and Matt too :)). So I hope you're able to take comfort in how small you are--God knows you can't do it alone.

Praying in Oregon,

Amanda

WendyBee said...

Dear Patrice and Matt,
We prayed for Jonah today at our church, and I know God hears all of our prayers.
I am touched by your common sense and uncommon wisdom. You have learned so much about caring for Jonah, and it is clear that God has placed him in the most wonderful home, perfect for him.
Remember the prayer to God to be a light to your path, and a lamp to your feet. I once heard it described that this means exactly that, that God will illuminate for you the step to take right now, for this minute, not down the road. He knows what's around the bend, and off in the distance, you don't need to know just yet. (I know, easy for me to say...).
Tomorrow, I'll share another anecdote, that I hope will help.
In the meantime, trust that God will give you exactly as much wisdom as you need, exactly when you need it.
(So easy for me to say, I know, much harder to do.)
You are such good parents, and doing your very best. Rest secure that God is in control.
WendyBee

J. Morgan said...

Dear,sweet family,
I have been following your blog for months..all of the ups and downs. You are doing such an amazing job. I am a nurse..have been one for many years. Please listen to your gut feeling and to those parents who are EB parents. Sadly, the medical system in this country is badly broken and if they say to ONLY listen to specialists in this area, then I absolutely agree. If things don't seem right or feel right or act right, it ISN'T right. Listen to your heart...God gives you that gift with a child with special needs.

Always praying for you,
J. Morgan, Canton,OH

Mindy said...

We Are Still Praying!

Joanne said...

Praying for wisdom for you, doctors and caregivers. And of course for healing ofr wee Jonah.
In Christ from a Grammie in Vancouver, Canada

Anonymous said...

Praying some more in CT. I hope Jonah has a better day/night and that somehow, you and your dh can manage to get some peace of mind, comfort and rest. I also know it may be of no comfort what-so-ever, but our (non-EB) daughter vomited mucus & milk each & every time she had a cold for her 1st 2 years of life. It used to scare the crud out of me, but that's just how her gag reflex worked. Even now (at age 5), she'll still gag and throw up when she has a cough. I hope that's "all" it is with Jonah.

Hang in there and take care - as you allude to in your post, God didn't bring Jonah this far only to take him back so soon! I'm sure of it.

Anonymous said...

Try to keep your head up. At least you can hopefully find the problem and head towards healing. I thought about your family and Jonah as I sat in church today, finding myself zoning out just thinking. But I came to a conclusion that it is not fair but God MUST have a plan for Jonah and you guys.

Anonymous said...

Aww Patrice and Matt! I hate lil Jonah is feeling bad. If you are still in the hospital tomorrow night (hopefully not), expect a visit. I work Monday, Tuesday, and Wednesday. You are in my prayers, let me know if you need anything.

Love,
Sabrina

Martin Family said...

Whatever God's plan, know that our family prays for you daily. I sit and think about your precious son, and I thank God that I am blessed to be praying for him. It may not feel like it now, Patrice, but you are doing great things. Not only in your care for your son, but in sharing it with the hundreds that visit this blog everyday. I imagine that you have touched many more people than you will ever know. Your candid posts, your honesty, your faith...God is using you in a mighty way. May He bless you with peace, wisdom and mercy.

Anonymous said...

Praying for Jonah on the OBX... I am sad to read you questioning yourself so much! You guys are doing great; try not to be so hard on yourself. Feeling scared about every little thing is to be expected, but don't doubt yourself. You are awesome! And remember, medicine is not always black and white. What works for another EB baby may not be what you feel is best for Jonah. And perhaps a "regular" physician (not an EB specialist) can offer a wonderful piece of advice you never expected?!? You are ultimately in charge of Jonah's care here on earth and you are doing a great job!

CinderellaMommy said...

Praying for GOOD NEWS! Hope little Jonah feels better soon & can get back home quickly! You continue to be in our prayers. Happy Easter!

SW WI MOMMY

Anonymous said...

Praying for your sweet Jonah in Idaho!

Donna said...

Continuing to pray from Calif.
Sorry that you are in the hospital. Our son does not have EB but has had lots of 'scopes but not as young as Jonah. Since 1.5 years old-after trying many other tests it was the one test that allowed the doctor to find the problem he has and then continue to monitor it. I pray that the Doctor's will be wise in Jonahs circumstance and do what is both best (for results) and easiest on Jonah physically.
I pray for you both as his parents!
Try to rest when you can -God Bless you both.

Storybook Woods said...

I am praying for wisdom. Clarice

Anonymous said...

Hello Patrice..I am hoping you can get some peace tonight knowing your son is safe in the hospital..I can share with you what I know about scoping airways..but of course my son has dystrophic EB..not junctional so take it for what it's worth..casey is scoped every 8 weeks in cincinnati children's hospital in Ohio by Dr. Elluru who is amazingly talented with EB children..that's why we make the commute..I highly suggest consulting physician to physician with him if possible..Cincinnati children's hospital has the best pediatric ENT department in the country...If you feel he needs to be scoped...follow your instinct..I can only say I know several junctional children who have been scoped there without any complication..my son has been scoped 6 times since the trach without complication..so it is possible..find the right surgeon and ask god to shower him with wisdom and he will be ok with it..I have always opted to scope casey in the OR...that is just what his ENT and us as parents decided was the right choice..Without sedating my son, he will wiggle, cry and the scope will tear him up..resulting in an innacurate picture, blistering and inaccurate results...or having to retry it in the OR anyway..and they can't get the lower airway in the office or bedside..you need to see the whole picture...Even though the OR is sedation and anesthesia it is fast, easier on the child and he doesn't even know it happened at that age..A scope will give you a picture of what is going on in his airway..and will arm you with knowledge..maybe it's nothing too serious and will not need intervention...Maybe your son will just have airway issues as part of EB that will just be the norm and have to be dealt with..but at least you'll know...follow your instinct as a mom...and don't let the doctor's "guess" with the airway..I know with different types of junctional, there is no way to intervene..it just takes it's course..Just rest assured I know children even with junctional who have been scoped without problem..please email anytime you wish..I have been where you are several times..In the OR it is a very quick procedure..like 40 minutes including prep time..with Casey they usually give him versad..wait till he's "happy" and then sedate him in the OR..once he is sedated, they start the prep...like the IV and all..and he never knows it happened..we were discharged 45 minutes after the procedure was done. and we had a very clear picture of what was going on in there...We are returning to ohio next week for yet another bronchoscope with Dr. Elluru..Place your child in the best hands you can and pray...I hope you all return home soon...WE will continue to pray for you and your family...johnbeth91@aol.com or if you ever wish to call, Gerri, the nurse educator can give you our number..Don't panic until you have reason...follow your instinct and you will not make the wrong decisions for your son..he was given to YOU for a reason...
Hugs and kisses,
beth

Anonymous said...

PS: Maybe it will just turn out to be "normal" childhood things with Jonah ..as EB parents we always focus on EB...and sometimes it's just those "normal" baby things..I can remember so many times my pediatrician said to me..It's not EB...it's a cold..it's aspiration...it's just a fever..He's teething...and he was right...Hoping that it turns out somthing simple for you guys..I just think you should rule out EB airway issues to put your mind at ease..You will gain confidence in yourself with each experience...best of luck and keep us posted..

Cathy said...

continuing in prayer for sweet Jonah and whatever procedure they decide. Praying for your rest and peace.

Penny said...

So sorry that you are back in the hospital but maybe while you are there you can make some connections with Drs. that have a lot of EB experience and they will be able to help light your path. If you end up heading to Cincinnati I would be happy to help you with arrangements for you and Matt. We don't live in the city but close.

Praying that there is some light... It must be so hard when the medical staff you are working with is not familiar with EB. I would camp out at the EB specialists and beg them to give you some peace..........

We will be praying for your family and your medical team.....

Stacey said...

I am so sorry you guys are back in the hospital, but I hope you can rest assured knowing that everything is ok.

I pray for wisdom as you guys decide what to do with Jonah. I pray for God to direct the hands of those working with him.

Take Care,
<><

KathyL. said...

Get some sleep kitty, and be strong for your little love in the morning. This must be God's way for you to get a little more rest, and for Jonah to be where he needs to be for the moment. love you all, and prayers too. Kathy

Channe said...

I don't know anything about EB, but I do know that out of the 6.77 billion people (yes, I looked it up on Wikipedia) on this earth, that God picked YOU to be Jonah's mommy. He has been preparing you for this since YOU were in your mother's womb. Patrice - He will give you wisdom & strength beyond measure. Praying in Louisiana - The Karabas

LisaL said...

I've been thinking about you all day. Was glad to see you posted today after you were so down yesterday. Sorry to hear that Jonah is in the hospital, but hopefully this will help you get some answers to what is going on. You are in our prayers! Praying that you get some rest and that the doctors have the wisdom to treat Jonah appropriately to get some answers.

Mike and Molly Spivey said...

I love what Channe said! - That out of everyone on this earth he picked YOU and that he has been preparing you for this since your birth! What an amazing concept! Take heart in that and that God is a sovereign God! We are praying, praying, praying for you guys!

Dovenoir said...

We are in cincinnati about a mile from the children's hospital our home, car and any resources we can share are available.
My neice had 2 ent surgeries there. My email is Lyzdietz at yahoo.com.

Alisa said...

So sorry that you are in the hospital again, but it does make a difference when you can stay with your baby. My baby had to be scoped twice for similar problems and ended up having surgery. We opted for the non-surgical scope prior to her larger surgical procedure. It could be done in the office and was VERY fast. She was awake and easily soothed afterward. She does not have EB so I know that makes a difference but I thought I would at least let you know what we did. Praying for you.

Tracy said...

If your ENT doesnt' get a hold of the Cincinnati docs, you can call yourself and ask the nurse what their normal protocol for EB babies is. I talked to them at length before transferring care from the local ENT and they were great. They even helped me get around some of the politics and other sensitive issues when you have both a local ENT and an "expert" out of state. Best of luck.

Nicole said...

Praying, praying, praying for your family!

Kim M said...

Praying for Jonah, you and Matt - I'm so glad God has given you an EB community to help you as Mom along the way. YOU are Jonah's parents because God knew he needed you! Thanks for the updates,
continuing to pray in Michigan.

Stephanie said...

:(

Anonymous said...

Patrice-
I have been thinking and praying for your family even since I stumbled upon your blog. I am a pediatrician in a different state, but have taken care of two kids with severe dystrophic EB. I am not sure what your current dr's are thinking where Jonah's lesions are or what is the issue or what the goal of scoping would be, but instead of a scope we were able to use airway fluoroscopy and CT scan to evaluate airway narrowing. Like I said, I don't know if this would be option for you or if would give the same information that a scope would - but it was a great option for us here. (The scope was only performed after CT determined a need for a trach - now the child is scoped repeatedly but through the trach). I hope this gives you another insight!

GM

Karen & Shahin said...

Happy Easter! I am so sorry that Jonah is back in the hospital but I hope that the end result is an answer to some of his respiratory and feeding issues. I know that Junctional EB has a lot of this and your little Jonah is in my prayers each and every day. May God lift him up and heal him.

Karen in Boston

Jennay said...

Ongoing prayers continue for your family and little Jonah.

Stuart and Tashia Uken said...

Patrice,

With our first son who had junctional EB we did a scope. We had been flown from SD to Texas to see Dr. Levy who is a dermatologist who specializes in EB. Ours was done in at the hospital we were in in Houston. He had an ENT do it that was familiar with EB and had done them before in EB kids. They did it in the OR. We don't regret having it done. He had quite a bit of involvement there and we may have caused more having it done but we just needed to know and felt better knowing. Knowing why we had feeding issues, all the noises, and so forth. Never second guess yourself on making decisions or on decisions you already made. Pray about your decisions as I am sure you already do. We do not regret anything we did with either of our boys. I am a known worrier so just knowing helped me so I was not as stressed out. And as I am sure you already know the airway is a big concern for JEB. So for me it was good to just know how much involvement there was for our son. Hope this helps. Praying for you, Matt and Jonah.

In Him,
Tashia Uken

kristen said...

Have you discussed the possibility of GERD (reflux) with your doctors? It is quite common in infants and very treatable. My 8 month old has it and when she was in her first few weeks it was so bad that she would have some of the same symptoms you have described with Jonah. She choked often and her milk would come through her nose like that. We had a couple of ER visits because it got so bad that she stopped breathing once due to the choking. Who knew reflux could cause respiratory distress? Anyway, I felt led to share this with you as something you may want to ask your dr. about. I am not a dr., however, if Jonah's recent distress is the result of reflux, it could be treated and bring him more comfort. Reflux also causes pain which I know Jonah does not need any more of! My daughter refused many feedings because of the pain in her esophagus from the reflux. Just something to consider from one concerned mama to another. I'm praying for you and Jonah!

Anonymous said...

It's Carolyn from Greenville, now in Greensboro. I wanted to let you guys know that you've all been in my thoughts since I found the blog. Please let me know if there is anything I can do to help you out. I know you're probably getting tons of offers, but I'm close by, so let me know even if it's just someone to come by and be there (I'm still in school so I have free time during some days). I love you guys.

MITZI said...

I was wondering this morning how I found your blog? I don't remember. But God directed me here to pray for Jonah. I pray for him throughout the day and will continue. I wish I could hug your little guy. He is precious.

L2L said...

we are praying all the way from Okinawa, just think your day in my night so I can easily cover you in prayer through the nights, adding you to my blog reader so I can keep up on your current prayer needs!!!!

Tribulation said...

here is the website i mentioned in my earlier comments just in case you didnt see it. it offers a way to get in touch with other eb families and learn how they coped. and it also has information on care of eb patients as well. just thought it would be helpful.

http://www.ebinfoworld.com/

lots of love, prayers, and hugs to you and yours.

Tina

Nancy said...

I just found your blog. Between reading this post about Jonah and reading your "About me" about Gabe, I know you've been through and are going through a lot.

I wanted to offer up HUGS to you and Prayers and Positive Thoughts for your beautiful son. My heart aches for you. I hope he's ok.

Ann said...

I pray for Jonah and you and Matt every day. I'm so sorry that you've felt so frustrated...I will pray for peace and strength! God is good, and He IS THERE, even if He feels so far away. (((hugs)))

Ann in SC

Brooke said...

Your courage and faith have touched my heart. May God abundantly bless you with hope, strength, and wisdom. Praying for all three of you...

Brooke Coyle
Franklin, TN

Alisha said...

Paying for little Jonah. Sorry, I don't know anything about scopes or the procedures. :S

Ocracoma said...

Your extended family in little Washington is thinking of you. Love, Tony, Amy & Macon