Friday, December 11, 2009

a night out and lots of gushing

Update: Okay, nevermind about the Reglan.

This will be quick but I just wanted to let you know we are still here and doing okay.

Yesterday (Thursday) was my birthday, so Matt took me out tonight to dinner and a show. I knew he had something planned, but he kept it all a surprise. We ate at Sweet Potatoes (so amazingly tasty) in downtown Winston and then went to the Alliance Theatre and saw "Christmas My Way," a Frank Sinatra Christmas musical. Kathryn and her mom kept Jonah so we could go. It was all very fun, and it was great to have an evening out. Did I mention the food was delicious? Because it definitely was. I'm so thankful to Matt for taking the initiative to plan it all. It was exactly what I needed. He said something like, "I know you like experiences more than possessions," and he's exactly right. I'd so much rather have a memory than a thing. It was wonderful.

The evening was just a little bit tainted though because I am really worried about Jonah. He had barely been gushing at all (we were going about ten days between and then having maybe one bad day), and since last Friday, he has gushed (three to four ounces at a time) six of the last eight days. Up until today I thought we were just doing our normal acid reflux stuff, but today he had huge gushers five times. One with every feeding. I bet he puked at least ten ounces today. A couple of times it was tinged with blood. I called Geri, the DebRA nurse educator, and she said that all the gushing has probably caused blistering in his esophagus, and that the blood is just one of those blisters having drained. She says as long as it's just lightly tinged, the blood is nothing to be panicked about.

More than anything, I just don't understand why it's so bad all of a sudden. It seems like if it was the milk protein allergy or lactose intolerance, he would have started this weeks ago when we changed his formula. He has been great for weeks! We're not doing anything differently. And obviously all the throwing up is damaging his poor throat. And I guess the worst part is I just don't know what to do about it. I mean, do I go to his regular pediatrician or GI doctor for lots of tests and stuff when ANY procedure is very complicated and hard on him? Can they even do anything about it, especially if it's EB related? How long do I wait before I pursue medical help? I get so frustrated that I just don't know what's serious or what's regular baby stuff... or that even if it is "normal," it is much more serious for him than for a "normal" baby. I get angry that so little is known about this disorder, it just feels like a guessing game. Ugh. It just seems like every time we have a breakthrough (eating so much better), the bottom has to fall out.

Why is it so bad now? He doesn't act sick or like he's in any pain, except when he's actually throwing up. Afterwards, he's laughing and smiling and can usually take the rest of his bottle once it's over. Obviously he's gained weight pretty well, even when he was gushing regularly, so that's not even what I'm really worried about. I guess I'm just worried that something bad is causing this... something more than the normal stuff, it seems to be getting progressively worse, and now the blood thing, so I know it's doing damage.

Grrr. I'm just so frustrated. I don't know what to do. I guess I'll call whatever doctor is in the office in the morning, but I have no idea if there's anything they can do. I thought I'd ask about the Reglan, since several of you have mentioned it. He's on a high dose of Prevacid, but I've been told that doesn't help with the throwing up, it just helps it not hurt so much. Maybe Reglan would help him keep it down?

Please pray that Jonah will feel better soon, and that it will be clear to us that this is a "ride it out" sort of thing or a "we need to pursue this" sort of thing.

I'm sorry this post is such a stark contrast to the previous one. I don't have any less faith or thankfulness today than I did on Wednesday when I wrote that post. But I am worried and do feel more helpless (helpless not hopeless) today. I just don't know how to help him.

38 comments:

The Goodman Family said...

Sweet Patrice,

I have not commented in a while, but please know that my family and I continue to pray for you and your family often.

I really don't know what to tell you along the lines of all of those "gushers", but we are also going to pray for the doctors and everyone who cares for Jonah. We just hope that they can figure something out to make things easier for you all, and what is best for sweet little Jonah.

God Bless!
Keisha in NC

Nancy said...

I have been following Jonah since he was born, but have yet to comment. While I have zero experience or knowledge with EB, I do have a boy who had severe reflux, he gushed from one feeding to the next, and subsequently gave me mot of my gray hair. some things that caused his spitting up to increase were teething and ear infections. We never knew why, but increased gushing was always an early sign. I pray that the gushing slows so you can worry a bit less. The one thing I do know is that you will do what is best for Jonah, you always do! Keep up the good work. Oh and our gushing boy stopped gushing when he could he could pull himself up, maybe gravity helped.

Island Jack's Travel said...

Does it help for Jonah to sit upright for a while after he eats? Jason had a lot of this gushing and that was the only thing that helped. He would need to sit up for about an hour (time for digestion?) and then we would not have those episodes. Fortunately he outgrew up by the time he was a year old, but it was frustrating, worrisome, and downright messy until then!

Kristen said...

Happy Birthday Patrice! I hope you had a wonderful night, and put Jonah in God's hands. You know all will be okay.

Laura A said...

Hi Patrice-

First, happy birthday! Sounds like you had a wonderful time.

I'm so sorry about the increased gushing - will pray that it stops quickly. Do you think he might have a stomach bug or the flu? He'd probably have other symptoms with flu (fever, etc.) but didn't know if you had thought about it. (I'm sure you have!)

Anyway, I'll continue to lift up sweet Jonah, and will specifically pray for the gushing to subside.

Hope you and Matt and Jonah enjoy the rest of the weekend!

Love,
Laura

Penny said...

Hang in there Patrice!

I have been praying for the whole family. When I see Jonah's little face in your pictures it just lights my day.

I can only imagine all the frustration of so little research. It has been heavy on my mind.

Precious 3 said...

I am praying for Jonah and your family. I know it must be rough, but I think you handle it well. Honey, you do a great job!

I am so glad you got a night out!

Carrie said...

Praying for the gushers to go away. I totally understand your worry and nervousness. I wish there were better answers out there for EB kids. Praying for Jonah always . . .

mommymeezer said...

food for thought...I have 3 young kids....I am nursing my 3.5 month old now and just when he is going to have a growth spurt he naturally starts nuring more to help increase my milk supply. The postive thing is that when the spurt happens the supply is there. The downside is that when he nurses in preparation...he has gushers too. Once I can notice a slight growth difference the gushers stop...usually in a week to a week in a half.

You gave Jonah breastmilk for so long...maybe it is a natural instinct for his body.

No matter what I will say a special prayer for you tonight. =)

Tricia said...

Oh, Sweetie. I am sorry you are going through all of this. I can't begin to tell you that I understand, but I can tell you that I am praying for you and sweet baby Jonah. God bless you with peace and grace.

Rhonda said...

Patrice,
I will pray that the gushers stop..As a mom to a medical fragile baby the thing I do is follow my gut instintion..You know him best.You know what is normal and what isn't..
I will keep praying for you and Jonah.

amathyst-eyes said...

I'm sorry this all has been so tough on you and Jonah - but I'm glad you had a nice birthday night!

brandie said...

Happy Late Birthday, Patrice! You sure have a thoughtful hubby..kudos to him :) So bummed to hear Jonah's circumstances, but like another commenter said, you know him best so go with your gut. Also, as always, Jonah, Matt and you can rest in God's loving arms.

Hope you can get a good night of rest!

Alison said...

Is it possible he just has a stomach virus at the moment??? If that is the case then hopefully things will settle back down.

My daughter had reflux and had major gushers multiple times a day - there wasn't much we could do about it unfortunately. When she wasn't well things definitely got worse.

Happy birthday - I'm glad you had a great night out.

Will pray for the gushing to settle.

Amanda said...

Hi Patrice,
I just want to encourage ~
you have God's Spirit on the inside of you ~ He is your Counselor, Helper, Intercessor, Advocate, Strengthener, Standby ~ if you let Him, He will show/tell you what to do about Jonah's gushing ~ He knows more about EB than anyone :-)
Just tell the worry/fear, etc to be still & then you will hear from heaven.
Just remember ~ your frustrations about EB might be the catalyst to bring more awareness to the world about EB.
God bless

Jessica K. said...

I havent commented in a while iether, I check in daily though and see what I can pray for! I will keep Jonah in my prayers and I know God can perform miracles!!

Happy Birthday to you though! Now that was sneaky! You should have meantioned b4 that it was your birthday! ;) I hope you will succeed in everything you do the following years!!

Much love
Jessi

Pam, mom, honey, said...

from one mom of a reflux baby to another. if he is growing then maybe his reflux meds need changed. we have been on zantac and nasonex and prevacid. i swear her body likes a change and wants to change meds every year

thepagefamily said...

Patrice,

Some items to research: compazine and Nissen Fundoplication. My son has a Nissen and he is unable to vomit. It may sound very invasive but it is actually a airly easy surgery and he was realeased in 3 days. Just an idea if it gets to that point.
Tracy
page410@netzero.net

Carrie said...

Patrice,

Happy Belated Birthday! I sent you an email awhile back when Jonah wasn't eating very good. I mentioned my son has gastroparesis, which is where his stomach empties slower than it should. He experienced frequent vomiting episodes. His doctor put him on erythromycin(the antibiotic), instead of Reglan (because of the many side effects Reglan has). It has helped! He still vomits, but not with the frequency that he did before. That may be something to check into for Jonah?

Praying for you all!
Carrie

Claire said...

Patrice, I am praying for you and the Jonut as ever.

And belated happy birthday, birthday twin! I had no idea we shared the same birthday!

Cxx

Maryellen said...

Woke up at 4:00am and couldn't fall back to sleep. It's been happening a lot lately, I think it is turning 50 LOL with all that said, first thing I do it start to pray for Jonah. He comes to my mind. You can rest assured Jonah is being lifted to the Lord at 4am in New Jersey :)

Erin said...

lifting ya'll in prayer. glad you had a wonderful birthday! sorry you have been worried about jonah...hang in there patrice....jonah is in His hands! much love and blessings~erin

Joye said...

Hi Patrice!

First of all, happy belated birthday :)

I echo what other people have said about this maybe being a stomach virus. But, with that said, I definitely know how frustrating the complexity of those "normal baby things" can be.

I saw that someone mentioned the Nissen. If you go down that road and research some things, you'll notice that the Nissen typically equals G-tube. Ethan got the Nissen for his severe reflux, and got a G-tube as a result of that. Now, he wasn't eating much of anything by mouth, so that may have been the G-tube deciding factor for him. I pray the gushing will cease, without you having to take any additional action steps.

Then, my main point of this whole comment, I want to warn you about Reglan. There is a current lawsuit about the serious side effects of using it. Ethan was on it while he was in the hospital, but they took him off of it pretty quickly. Here's the website where you can read all about it: http://www.reglansideeffectslawsuit.com/

As always, I'll continue to pray for you and your sweet family!

-joye

Ani said...

Oh Patrice, my youngest has acid reflux and its tough on everyone, so I cannot begin to imagine how much more complicated Jonah's case is... Our GI dr said that there's nothing that can be done to help with the gushers, and the antiacid medicines (we're on high doses of Zanta.c) just help with the acid itself. I'm hoping your drs can give you guys something to help baby J!
We mix the formula with a heavy dose of rice cereal, and are feeding in small amounts (3 oz, tops every 2-3 hours). It helps some with the gushers.
Praying for you guys!

Heather said...

Patrice,
Could it be that he has a stomach virus? That would make him vomit more often. Jule got one at 6 months, and it was so much worse than his usual reflux gushers. The next day, he did much better. Praying that's all it is.
Happy Belated Birthday! Praying for wisdom and peace for you.

Kiley said...

I am not a doctor, but I did experience this with one of my children. Do you think maybe he isn't absorbing the food and its staying in his belly longer? Maybe he is throwing up to empty his belly, then he will happily eat afterward because he isn't full anymore? I know how frustrating it can be to have things go so smoothly, then suddenly everything is different. Sending many hugs to you and your family. Jonah, your such a cutie.

Hugs
Kiley Rodrigues
www.kileyandjason.blogspot.com

Hannah's Mom said...

I won't even pretend to know what you are going through but my son does have a lot of gusher right before a tooth pops through. It normally lasts about a week. Then a tooth appears..... our doctor said it could be because of excess salavia that he is swallowing and his tummy can't handle it.

Peggi said...

My son had reflux as a baby. It seemed to come in waves. It would seem like he was getting so much better and then all of a sudden he would start gushing again. He is now 14 and has to make sure that he doesn't eat too much at one time because it makes him throw up, especially if he drinks to much.

Alyssa Marie said...

Patrice,

I enjoy reading your blogs, because more than anything, your daily frustrations and faith remind me of the beauty of our Lord. Thank you so much for sharing your struggles and reminding us that we are cared for in the midst of all frustrations, doubts, and fears, as well as joys.

My prayers are always with you and your family.

Alyssa Q

Mrs. Cuddles said...

((Hugs))
I've been an avid reader and praying behind the scenes but I wanted to share something that might help you with the roller coaster ride you describe.

My dd11 now had severe tummy issues like you describe and we noticed them to have waves of horrific moments that had me in tears at times. We later related them to her growing spurts. Thankfully as she is getting older they are obviously farther and farther apart. She still has them though.

I hope that you can find Jonah's 'reason'...but truly it might be that he is having another growing spurt which sparks it all again.

Continuing to pray,
~Tamara

Sara said...

I don't think the gushers are normal baby things and I hate to say 'normal' for EB, but maybe common in EB would be a better way to put it.

We have tried Reglan, I never really noticed a difference. I do remember it having a lot of side effects though. Its been so long, I can't remember which ones, but I am pretty sure they are listed in www.drugs.com

One comment above mentioned absorptions....issues with absorption can be common in JEB. And I think it can be tested for.

Hopefully he stops all these gushers soon!

Laura a.k.a. Lolly said...

I have no idea if this is an option or not but since you and others mentioned Reglan, I wondered about Zofran? It is a drug used to help stop vomiting/naseau/etc. - It is prescribed for chemo patients as well as others (I am currently on it because of severe nausea/throwing up due to pregnancy). I know other people's kids have used it when they had stomach issues and such. Just another idea to throw out there.

Praying that an answer to help him with his gushers will come soon.

Hope you guys have a merry christmas!

Big Mamma said...

Happy Birthday! Praying for decreased gushers and healing for your little guys throat. I did want to add something in here though. Although my daughter does not have EB, she too suffered from severe reflux and part of it was because she was premature. Every time she would gain weight about a half lb we would have to increase both the zantac and prilosec.

Thinking about you all.

thislovelyjourney said...

I haven't commented in a while (a certain little 14 month old decided my laptop needed a good dose of coffee and eggnog dumped on it... sigh) but have still been checking in and praying for all three of you.

I'm so sorry to hear about the latest gushers- especially with the blood. I will be praying for some relief for Jonah and peace for you too. Mommy minds are so full of worry even when things are all fine- I can imagine yours is just constantly on over-drive. God's PEACE to you, sister.

Also, just a quick suggestion: ZOFRAN. All four of my pregnancies I have been riddled with hyperemisis and zofran has been the only thing that helped quell the vomiting. One of my sons even had it prescribed to him during a particularly horrific round of the flu a couple of years ago in order to stave off a hospital intervention and IVs; so I'm pretty sure there would be an appropriate dosage for Baby J. Just a thought.

God Bless.

dr_bristow said...

I'm praying for Jonah and for clarity for you and Matt. I've been following your blog since shortly after Jonah was born, but have rarely commented (sorry!). Blessings!

Frances Barber said...

Lifting Jonah, you and Matt up in prayer! Also praying special wisdom for the doctors treating Jonah.

Jen said...

Hi Patrice, Just wanted to let you know that my son had gushers like that almost every day, if not every feeding! He was never upset by them, and like you said, was smiling and happy afterward. He never had acid reflux as far as I know, but we never had him tested either. Anyway, it completely stopped one day when he was about 10 months old. I don't know why it stopped, but it did. If Jonah doesn't seem bothered by it, I would dare say it's just a normal baby spit-up thing some kids have. Just wanted to offer some encouragement. Hang in there!

Kristie said...

Hi Patrice! Happy Belated birthday! Just wanted to let you know that my son had severe gushers as well and when we moved him to sippy cups it STOPPED completely!! It may be worth a try. He should be able to figure out how to work one. I'm not sure why switching to the sippy cups helped, maybe because he was able to control the flow!
I hope that he starts to feel better soon!! :)