Wednesday, November 18, 2009

jonah update

Update/Clarification:

Just wanted to clarify that Matt and I have decided (unless something comes up in our appointments here) that we will have Jonah's surgery done here, at Brenner's. What I meant was that all of the surgical team here will be speaking (through email and by phone) to all the specialists in Cincy so they can make sure they are doing everything the EB-friendly way and so that it will be as safe as possible. I love our doctors here, and I have full confidence in their ability to follow directions and trust that they are humble enough to seek those out. So, for now, we won't be heading out of town, but thanks to all of you who offered food, your homes, and company to us in Cincy. I'm sure we'll be up there within the next year so Jonah can visit the EB Clinic and see all the specialists.

And an update on his hiney: It's still very raw and very sore. Sometimes he cries when I just pick him up and am holding him on his bottom, even through his big ol' diaper. I'm coating a Vaseline gauze in Aquaphor, then Desitin, then antibiotic ointment and changing it out with every diaper change. I hope this helps keep the urine off of his raw spot and the Desitin (Zinc Oxide) aids in healing. I even put Desitin on sores on his limbs and feet. It's good stuff. (I like to get the Up and Up brand because it's so much cheaper, but unfortunately it smells like dead fish... I digress.) Anyway, he slept pretty well last night (but only took two ounces overnight... we're not waking him up anymore. He wakes up on his own), and he woke up kind of fussy this morning. First feeding coming up. It makes me tired just thinking about it.
*********************************

This will be super-quick because I'm feeling the need to rest tonight, and Jonah is refusing to go to sleep.

He's eaten 15 ounces today, and I don't figure we'll get anymore in him. The first half of the day went well, but we've really fought the second half.

Fifteen is better but still not enough.

Dr. S (Jonah's GI doctor) emailed this morning, and he's working on getting the right people in place and getting everyone in touch with the folks in Cincy. I think he's also working on getting our appointments moved up. The best thing in his email was that whatever day we end up meeting with the surgeon, he's also going to set it up to where we can meet, in person, with the anesthesiologist too. That is a very good thing.

Okay, that's it for me tonight. Still feeling low, but not quite as desperate as I did yesterday. Jonah is in a great mood and completely oblivious to the fact that he should be starving.

Crazy kid.

41 comments:

Nora Lee said...

Praying for Jonah, you, and Matt. God has worked so many miracles for Jonah already, it will be amazing to see once again how HE puts everyone in place for this next step for Jonah. Hope you rest well tonight.

Jodi said...

I have followed your blog for a few months now but have never commented. I want to say that I think you are an INCREDIBLE mother! My heart breaks for you as I read about the struggles you are having with Jonah's eating. I have a son of my own and as a mother, there is nothing more heart-wrenching than to not be able to meet your child's needs; and to see him in pain every day--I'm not even going to pretend to know what that is like! Your honesty and love for God is contagious and so refreshing. You're little boy (who is absolutely ADORABLE!) is one blessed kiddo to have such an amazing mom who through this all, has continued to praise God and trust Him in all things. Please know that you, your husband, and Jonah are in my prayers -- that God will fill you with HIS strength as you continue to travel this journey and that He will give you wisdom every step of the way.

Karen said...

I am committed to praying for your family. Your child, so adorable- gosh. It breaks my heart. I live right up the road in Lynchburg, VA. I check your blog regularly and have for some time. I can't remember how I found you, but I'm with you sister! I am asking God to heal Jonah daily, and to give you wisdom, grace and strength for this difficult journey. You are doing great. I am praying, begging God really for some peace for you, and some healing for your precious son. Amen

Mommyto3 said...

Hope you have a good and safe travel to Cincinnati. Let us know if you are up to visitors, we'll bring the sweet tea & chick-fil-a!

Coco said...

I've only commented a couple of times and I certainly don't know you personally but I was really hurting with you last night. So much so that I dreamed I was helping you make cookies for Matt and trying to feed Jonah for you to help out! As hard as all this is I hope that the tube will actually help you relax a little and enjoy Jonah more than you are able to right now. Take care and know we're praying for you in WA State!

LisaL said...

Praying for you all. Hoping that you can all rest tonight. Since Jonah isn't really eating can you guys let him sleep through the night so you can all rest and maybe he'll feel hungry in the morning? Wish there was something I could do (besides praying) to help lighten your load. Hope you know there are so many people praying for your family!

The Simmons Family said...

You will LOVE the Gtube.. really... it takes a whole load of stress off.

I know I don't comment much, and you probably have NO idea who I am.. but I read every single post and pray for your adorable family.

Mister Owen, my 22 mo old, was NG fed for 20 mo (tube down the throat) and I finally allowed the Gtube last month. I LOVE IT!!

The only thing our boys have in common is that they need more calories to gain weight because their bodies require more (Jonah for healing, Owen because his heart barely beats).

It's such a relief to know that they are getting all the nutrition they need.. stress free.

Good luck as you start this journey.

Andrea

Kelli said...

I am praying that all goes well with your appointment and impending surgery!!!

thorney said...

Patrice, You are the most awesome mommy. God is taking care, just to get two doctors on the same day is an act of God. Always keeping you and Matt and Jonah in our prayers.

Blessings, Mari

melissa said...

I have followed your blog for a while now and have been praying for your sweet family.

I saw this quote today...

I'm not afraid of storms, for I'm learning to sail my ship.

I will continue to pray for your family and extra prays for Jonah over the next couple weeks.

Laura A said...

Still continuing to pray, Patrice - and am praying for the doctors and anesthesiologist as well.

How's Jonah's bottom today? Is it healing at all? My youngest has a bad diaper rash right now (he's cutting teeth which means yucky diapers), and as he was screaming as I tried to put on lots of Desitin, I thought of Jonah. And how minimal the diaper rash seems in comparison to what he goes through every day.

I'm praying for healing for this sweet boy!

Love and prayers from TX!
Laura

A pair and a spare said...

We have been praying for Jonah for quite some time now. As a mother of a child who struggles to eat, I can't imagine the feelings you have when he is still a baby and is refusing to eat. You are doing a fantastic job with your precious gift that God has given you. My 7 year old son prays for Jonah every night during our prayers. I am confident that you will make it through these trying times. You have tons of support on your bad days and good days as well. Enjoy that sweet baby boy!

Howard said...

Praying for all of you and each of the doctors and medical team who will be involved. I cannot even imagine how frustrating and scary all of this must be. Praying for your heart too! :) Seriously, you are one of the most amazing mommies I have ever "known".

Dovenoir said...

I'm in Cincy, within a mile of the hospital. If I can be of any sort of assistance, even if I'm just company or someone to pray with. I'd be honored.

Melissa @ The Littlest Lobo said...

still praying for you strength and for things to go smoothly with trip and gi tube.

Karla said...

Praying for all of you guys!

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I continue to pray that you and Jonah get some sleep. I continue to pray that Jonah starts eating more.
I thank God that you have opened your heart and family to all of us so that we may continue in prayer with you.

We love you immensely.

RNRPRN said...

My kids were especially finicky eaters. They refused everything at certain points in time. I called it phases. My point with this is that I had to be creative. I had a new toy (or rotated out the toys every few weeks) or board books on my high chair during every meal. I would get there attention away from the fact that they were eating. 90% of the time, I was able to get them to eat because I distracted them. I'm sure they were utterly bored with the foods/formulas/breastmilk that they were consuming on a daily basis, but I knew that I had to somehow win at this eating game.

Also, as infants and toddlers, I pounded my kids with as much nutrition as possible with every sitting. I refused to do just a jar of carrots since there's minimal to no redeeming nutritional value in just a jar of carrots. I used the powder cereal boxes and mixed those with breastmilk and then used the carrots or apples or peaches or sweet potatoes as a topping. I had a friend that used to mix the jars of baby food with 2 scoops of formula when her daughter refused to drink the formula. WHATEVER WORKS! I don't porpurt to know Jonah's issues - you know him best as you are his mom. But sometimes (we have a group of 16 moms that candidly email each other with issues, questions, comments etc) it's a huge breath of fresh air to hear what another mom has done and then you try it and it works. Kids can throw you for a loop and there's tons of frustration and desperation when things fall off track. And, most importantly, THEY CAN SENSE IT. I think it's a matter of having a 'bag of tricks' handy with every thing that a kid does....from eating to potty training to discipline. It's great to add new things into your bag of tricks of experiences and advise from other moms. When your run of the mill routine stops working, you reach into your bag of tricks and try something totally new and different. Most of the time, mom wins.
Alas, I happen to be in medicine. I do not think there's anything worng about a G-tube. Most importantly here is that you don't blame yourself or feel like you failed somehow. It may be the best medicine as it will alleviate your sense of anxiety about his nutritional status. I know many kids that have g-tubes. The patients know and their parents know. No one else knows because it is so subtle and unintrusive. Currently, I know 4 year old twin girls that have them for nite time feedings. They run around all day long, no issues whatsoever and just use the g-tube at nite.

Enough from me....
All the best!

lifelaughsandlove said...

That's great news about the anesthesiologist being there! I'm sure that will help ease some of your fears. Continuing to pray for Jonah, and you and Matt daily!

~Amy

rameelin said...

Praying, Patrice!!!
God has perfect timing and it is all under His hand and watchful eye. Lean on Him for understanging and even when you feel too weak to do so, know we are interceding for you and Jonah (and Matt:) You're doing great...just hang in a bit longer. Things will start looking up! I just know it...

brightleigh said...

You know I don't post every day, but that does not mean I am not thinking of you guys. We continue to pray for Jonah to eat...maybe he is saving his ravenous appetite for Thanksgiving--he may be holding out for some of that turkey! Just know Patrice that you and Matt are incredible parents and that Jonah is so fortunate to have you. Keep your chins up and continue to set your faithful example.

Wanda Wilkinson said...

Hoping & praying that God will show the right pathway for Jonah. Glad to hear that the anesthesiologist is going to be in on the meeting with the surgeon. If Jonah has to have the Gtube, hope they can do it soon so that you will have that behind you.

Jonah is tough..amazing babies can freak us out while they go about their business --- happy as can be. that means Jonah will not remember the pain he goes through.

Tripp is asking for prayers for Jonah--glad you 2 families have each other by internet/phone for encouragement. Sorry this horrible disease is what connects you. HOpe you got some rest. Know we love you

Jennifer said...

Hi - I read your blog daily, but I have never commented. I think you are a wonderful person and an amazing mother. I am a mother of two babies under 4 and I thought my life was difficult. I can't imagine what you feel like. It makes me so mad when people judge you, but it makes me smile when you stand up to them! Go Patrice!! Jonah is so adorable and he is very lucky to have the Mama and Dada that he has. Please hang in there and know that you have a ton of strangers out in the world that are praying for you, Matt, and Jonah.

Meghann Gehring Turnquist said...

The regular Up & Up version of Desitin does smell awful. : )
We use the Creamy version (in the emerald green box) and then I thin it out a bit with some vaseline and mix it together in an old Alwyn Cream container. It actually smells pretty nice .... which is a good thing since I get covered in it throughout the day as well.
Hope today is a good one for you guys.
Much Love and Many Prayers.

Wendy said...

This next step with Jonah, although scary, sounds hopeful. I will be praying for all of you as you enter the next phase in Jonah's treatment. Stay strong.

Gina said...

Oh, sore little bum. I used to use this concoction to help with the severe diaper rash. Maybe it will help.

After you have a clean bum you apply Mylanta or some other acid medicine. Let that dry chalky white. Then apply whatever diaper cream you use. Then top it off with powder.

I am sure that Jonah's diaper rash is different from the norm but this always worked for my kids.

Good Luck. You and Jonah are always in my thoughts.

Marni said...
This comment has been removed by the author.
CrazyYukoners said...

Praying for you guys and for Jonah, cannot even begin to imagine how hard it is for you!
I have been reading your blog for awhile now and always wanted to leave a note of encouragement but never have until now.

I have worked with special needs children for a few years now, and from my experience talking with parents whose children have g-tubes it had made their lives alot easier. Also, having experience in the whole g-tube area, I can honestly say that it isn't is scary as it looks :)

Hopefully after it is all said and done, it will be one less thing you have to worry about!

Ani said...

I'm an original Desitin believer - I even like the scent :)
Hope today is a better day in the eating and healing front.
Blessings.

Tracey said...

I don't know if this is EB friendly or not but I swear by Triple Paste for terrible diaper rashes. I get it at Target (my fav too) because it is cheaper than other places. It comes in a big tub and is thick. Both of my kids often get terrible diaper rashes when they were teething. I think if you are using Desitin that you could use Triple Paste. I love it!!!

Sincerely, Stephnie said...

Hoping that a nights rest brought you clearity to take on todays tasks. Praying for brighter and easier days ahead.

Sincerely,
Stephnie

Kelly said...

I am praying for Jonah, you and Matt. I think you are doing such an amazing job with him. I don't know if this is EB friendly, but have you ever tried Boudreaux's Butt Paste? This is the only thing I have ever used on my daughter, and it usually only takes one usage to clear up any redness on her bottom. She never has had anything as severe as what you describe Jonah as having, but it might be worth a try. It is a little more expensive, but you don't have to use it that much since it clears the rash up so fast. It really is amazing how fast it works.

Michelle said...

Patrice,

I've been a foster parent for several years, and several years ago I had a child with severe formula issues that would make his bottom go from fine to bloody in one day! The skin would peel off of him terribly. And he'd cry just like your Jonah.

Anyhow, I don't know if there are limitations to what you can put on Jonah, but our pediatrician recommended 2 things...one of them worked miraculously and seemed to soothe the pain!

They told us to use the Aquaphor (which seemed to do very little for him). The other product was the miracle cream! I can't remember the name of it now because it's been a couple of years and we only had that baby for about 2 months.

Anyhow, we didn't need a perscription for it but we had to ask the pharmacist for it because it was kept behind the counter. It smelled menthol(-y)so I was worried that it would burn. The girl behind the counter said, "It seems like it would but it doesn't...in fact, it has the opposite effect and seems to soothe the pain." Long story short, it worked like a miracle for our babies bleeding bottom and I don't know how we would have made it for those 2 months without it!

If you would like more info about it, please just leave a comment on my blog, as my email is messed up right now.

Blessings,
Michelle

Staci said...

I don't have to time to read all the comments here to find out if someone else has mentioned this or not because I don't want my potatoes to burn in the oven...
Anyway, I was in MckMama's BlogFrog forum and saw an ad from Blogher about a chance to win a $1,000 Visa gift card from Aquaphor by sharing your story. I thought of you immediately since you use Aquaphor by the bucket loads. Here is the link so you can check it out.

http://www.blogher.com/special-offer-aquaphor

You have to be registered with Blogher and if you aren't you can do it and it's free. Now I'll go check my potatoes then come back to read your post.

Brenda is SO Blessed said...

I just wanted to tell you something how you have impacted my life---in a strange kinda way. I am a nurse but did not know anything about EB before I "met" you guys. Anyway, i work for an insurance company, after I "met" you I noticed that EB is on our criteria for wound care. I had worked with the same info for almost 13 years-- and never noticed it. You have educated a nurse through your journey.
I wanted to let you know too, that I pray for your family and all the other people with EB. As a nurse, it is something I am interested in knowing about. I hope someday I can help someone with the knowledge you have given me.

Mandi @ It's come to this said...

Keeping you in my prayers ... you've had to make too many tough decisions & I pray God will bless you with peace!!!

Rebekah said...

I know you didnt want the Gtube, and boy oh boy Patrice, did you and your hubby ever work hard for Jonahs sake....but...I bet once its in, and Jonah gets a full belly, he will be sleeping longer then every and so happy, and you will get rest in return. I just know this will all go well. I cant wait to hear reports about Jonah growing. :)

sadiesmommy said...

O.K., I do not know anything about EB, I found your blog thru another blog. I know you get tons of info and suggestions and I know mine not be helpful, but I had to post just in case. I'm a speech therapist and I went to a wonderful course on Food Chaining. You might've heard of these two amazing women already. If not, please check out their blog
http://cheriandlaura.blogspot.com/

They have done some wonderful work with ALL types of kids.. preemies, typically developing, non-typically developing, etc. They work on feeding sensory issues. I think you should email them (if you haven't already read about this) and get them to help you and that sweet, sweet boy. My momma heart aches for you struggling with feeding your Jonah. Anyway, just a thought, take it or leave it, and keep your head up. I know it must be a beat down at times, but I think you are an inspiration to all moms. Truly,

Cyndi said...

I haven't written since Jonah was a newborn, but I have followed you guys since he was about a day old! Anyway, I have 3 kids, and I know everyone is different, but I wanted to let you know that every time I tried Desitin on any of my 3 babies for a rash, it pretty much IMMEDIATELY made it way, way worse. But as soon as I just used A&D ointment it helped right away. Something about Desitin just does not agree with them. The only reason I tried it on each of them was I always had a sample and figured I try it. So maybe that is making it worse for his bottom? Good luck!
Cyndi

metatthetrellis said...

Have you tried Triple Paste? Not sure how it would be specifically for EB, but normally good stuff for raw hiney areas and no fish oil so no odor!

Amber Schmidt said...

I think you are definitely making the right decision. I have figured out over the past few years with Kyleigh that it is not always about the biggest hospital or the #1 specialist ... its more about who and what is RIGHT for my daughter. Our favorite surgeon is right here in our city and we have chosen him over some of the best surgeons in the world for various operations. As a family that has resided for months on end in Cincy (specifically CICU, A6C and A5N - shout out to our amazing nurses!) I can tell you that it is an amazing place. I can also tell you that we receive JUST as good of care right here at home. Do what you have to do and what YOU know is right. You are the mommy and I promise you... you know in your heart what to do! Always... its a mom thing... LOL