Monday, April 12, 2010

surgery scheduled

So... here's the skinny.

Jonah is going in for g-tube surgery on Thursday, April 29th. Right now I feel good about it (well, as good as you can feel about your fragile child going into surgery), but ask me on the 28th. We'll see how I'm doing then.

A couple people have asked what the risks are so I'll give a little rundown (of what I know, at least... I'm certainly no authority on all things g-tube.)

So the positives first. Jonah will have a way to eat/stay hydrated no matter what. If he's in a mood or sick or has blisters in his mouth, we don't have to force him to eat orally. He can stay hydrated no matter what. After this past week, I realize just what a big deal that is. Hopefully this will save him from many ER trips and IV's in his future. I could visibly see, this past week, the damage not being nourished did to his skin. He's healing well now again. It will be a way to give all his meds (he's currently on four meds, two vitamin supplements, and Motrin as needed) and that nasty Polyvisol with iron (which I've currently stopped in efforts to make his bottles as positive and good-tasting as possible). We also need eating to be positive for him. I want to make it fun and enjoyable, not have to force it down his throat. We're never going to be able to encourage solids, juice cups, and happy bottles if it's always so forced. After this week of coming at him with bottle, every juice cup known to man, popsicles, and even syringes in attempts to keep him hydrated, he now screams and tries to climb his way out of the highchair every time I put him in it. I've basically undone all the "the highchair is a safe, fun place to be" work we've been doing over the last month or so. Frustrating. LASTLY (and very lastly), it will make our lives so much easier and less stressful. A fellow EB mom emailed me this week, and I could identify with everything she said about the feeding issues. They chose a g-tube for their son. She said, "on the days he is sore and hurt, I drop the Pediasure in the tube and instead of fighting with him for hours, we cuddle and watch a movie in peace... A huge emotional drain was lifted..." I want that. Jonah having a g-tube will mean that I am a better mother and wife. I can handle the blisters and dressing changes, but stressing every moment of every day about whether or not he's going to get enough, stay hydrated, gain weight - it's a lot. THAT is what about sends me over the edge. And we've been dealing with it since the day he was born. Knowing he is nourished and healthy and gaining weight is going to lift a cloud of stress and anxiety from my shoulders - from our lives.

Now the risks or potential complications. Jonah will have to have an IV placed. Thankfully, he'll be asleep at that point (I think) so at least they want have to wrestle him and mess up his skin even more. It will be more of a problem once he wakes up. Jonah will have to be intubated. This is probably the biggest risk to him. The tube going down his throat could potentially cause blistering in his trachea. Plus it will be hard to secure since he can't have adhesives on his skin. Our anesthesiologist (Dr. S, if you want to pray) has talked to the anesthesiologist in Cincinnati and has all the EB friendly materials on hand. All of the other risks are mostly post-op - risk of infection, risk of leakage, mostly just risk that it will irritate and blister his skin. If we can just make it through surgery, I think we can deal with everything else as it comes. We just don't want him to have complications so severe he has to go back in the O.R.

So, that's where we are. Lots of pros. Risky cons. Still probably the right thing to do. In the nature of Jonah, I'm sure he'll start eating like a MEGA champ between now and then to totally confuse us and make us doubt our decision. That's just how he rolls.

Since this is already so ridiculously long, I'll just go on. Last year I wrote
this post the night Jonah was going to have to get a PICC line in his neck. Matt was sick and having to stay away from the hospital and our house in efforts to keep us from getting us sick. Jonah's arterial line was on the verge of coming out of his belly button and was not safe for feeding anyway. There was no way to nourish him. It was a choice between putting in the PICC line or just having faith he would start eating the next day. He hadn't yet started eating substantially on his own. That same day he had pulled his N-G tube from his stomach and had choked himself on milk (the tube was up in his throat) in front of my face. It had been a HORRIBLE day. I was on my way home, sobbing, terrified, feeling so anxious (understatement) about the procedure he was to have overnight. I was literally heaving with sobs and yelling to God on the way home - that He would save Jonah from the procedure or help it go flawlessly, that He would protect him, that he would give me peace with the decision I had just had to make.

Let me just break here to say that I have had very few experiences in my life where I feel like God is talking directly to me or that I've physically, undoubtedly felt His presence. I know that God works this way, but I think I'm pretty closed off to it - so wrapped up in myself and my circumstances - that I have a hard time letting Him in. This is all so you know that I am not writing this lightly...

So I'm going down the highway, screaming at God and sobbing. I've watched my child choke. Matt's not at the house. I feel completely alone and surrounded by demons. I was low. And as I'm about to get off our exit, mid-scream, I stop. I feel a complete and indescribable peace come over me. I didn't hear words, but I undeniably felt Him let me know that everything was going to be okay. It was in His hands. I didn't need to worry anymore. I was completely calm. I went home and went straight to bed without tossing and turning a bit. The doctor himself called me at 3:30 am to tell me the procedure hadn't worked. They hadn't been able to get the PICC line in. And I said, "Okay then," felt completely sure and peaceful and fell right back to sleep. And the next day he started eating. It was amazing, and I knew, without a doubt, that God was with me. He was in control. Whatever happened, it was going to be okay.

And that's what I'm praying for now - that the choice will be clear, that God will take it completely from me, that He'll protect Jonah, that He'll give us that indescribable peace with our decision. Logically, I know it's the right choice for Jonah's health and well-being.

Now we just need our hearts to be at peace with all of it.

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.


Father, we are thankful. Please guard our hearts. Give us YOUR peace.

63 comments:

Just Diane said...

I hope you have peace too. Keeping you all in our prayers everyday!

Jess and Krissy said...

I'm so glad you're at peace with this decision for now. I pray it stays that way. I know you've been so torn over it. We're praying for Jonah and you guys, too!

Precious 3 said...

We will be praying hard! I'm praying this will be a blessing for Jonah, you and Matt.

Janel said...

Take an EB kit to the hospital with you - mepilex lite, the adhesive remover spray etc. Give the mepilex lite or mepilex tape if you have any to the dr and let them know that this is the "safe" adhesive. Keep the adhesive remover with you just incase they put some other "non-safe" adhesive on him. Tell them not to remove anything sticky from his skin and that you will do it after the surgery.


Everytime I have to go to the hospital I take all of my stuff with me - makes the whole thing go much smoother. IV's can easily be held in place with either Mepilex Lite or rolled bandage with tape on the bandage only.

You know I've been through a MILLION surgeries and never have I had to have traditional tape - you can do this - Jonah can do this and most importantly the Doctors and Nurses can DO THIS!

I will definately be praying for you guys and please feel free to call me if you need anything!!

Love you guys!!
J

Kelly said...

Praying that you have peace, and know that Jonah is, and has always been, in God's hands.

tomandcheryl said...

I am not in the same situation as you at all and I don't pretend to be. But I just want you to know that I think you are making the right decision. You need to be the best mom you can be for Jonah! Goodluck with everything. I hope you continue to have peace.
~Cheryl

Beth said...

I'm praying for you guys!

Deanna said...

Praying for continued peace and strength for all of you! Re-read this post and that email whenever you begin to feel doubts creeping in. God will take care of it all!

Photographic Memories said...

As my boys always say when they're worried about something, "God always takes care of us." His hands will be on Jonah and His arms will be around you and Matt on that day, and you will have a whole bunch of people on their knees in prayer for your precious little boy. Tell me how i can help before, during, and after the surgery. I'm here for you!
~jenn

Sewconsult said...

My heart aches for you all, but it sounds like you have done your research & have come to the best decision for Jonah. I will be praying for him, the doctors & you guys.
Beckie in Brentwood, TN

Beth said...

praying for Jonah and for peace for you.

Christine said...

I can already hear the peace in your voice through the tone of your post. After 2 kiddos, I've learned to listen to my mommy's intuition...Mommys know what their kids need.

Praying for you guys!!

Mary Ellen said...

I will be praying!

lifelaughsandlove said...

I will be keeping you in my prayers. It's so cool when you just feel the presence of God and know that He is in control and you feel that peace that passes all understanding. I will pray for that kind of peace for you in the coming days as you prepare for the surgery.

On a completely unrelated note, I'm in NC right now touring garbage companies with my husband (yeah, I know, we're weird like that). Anyway on our tour this girl was explaining how we are in the triad area, and I was like I just know we are somewhere close to Patrice and then I got the urge to make the bus driver pull over at every Chick-Fil-A and Target that we went by in hopes of seeing you and Jonah :)

~Amy

Karla said...

Praying for you and your precious family. God will give you the peace you need. I just know it.
Sending love and prayers from Tennessee,
Karla

Barbara said...

Patrice,
Did they talk about a Nissen? That is another procedure commonly done during a G tube surgery. From what i understand, kids with EB do not often have a Nissen because they have enough problems with strictures. If it's been mentioned, you might want to research it. I know it was not recommended for AJ even though he has reflux. He later went to a GJ - no additional surgery - but a line goes through the stomach opening and goes directly to his Jejunum. It has worked great for us. We will be praying for all of you. Every night AJ wants to look at Jonah pictures - he goes to my laptop and asks - I think he likes to see other children his age with bandages. He smiles really big and gets very excited. So keep posting those pictures.

Libby said...

We will be praying for you all this month!

Nancy said...

Praying, pryaing, praying in PA!!!!!!

Jennifer said...

I feel like you, that God does talk to us and we fail to hear him. I have had major issues and struggles my adult life and I'll never ever forget the night that God gave me the most indescribable peace over my daughter's impending heart surgery. I had been petrified, crying out to him and feeling very unworthy. There is no way to describe the peace He gives, but it is incredible and it changes you in the second you feel it. Reading your post gave me the chills because it reminded me so much of my experience with Him. We'll be praying it all goes well for you guys. I have a kiddo with a g-tube and it's been a blessing. And I fought getting it for two years! lol

Alison said...

I will be praying for that indescribable peace for you and Matt.

I want to thank you for the prayer you wrote. I really needed it. Thank you.

Meesh in MO said...

I don't comment much but I have been reading since Jonah was born. I think you are absolutely making the right decision with the g-tube. The getting it in and the prodcedures surrounding that are no doubt terrifying for all of you. I pray heartily that all will go smoothly. Once the tube is in and he is healed from the surgery your lives will change so much. While I have never dealt with infants in this situation, I have dealt with the elderly with g-tubes and have seen with my own eyes what a miracle they can be. A g-tube let me have my own adopted grandpa (a family friend) for longer than he would have stayed alive without it. God is watching over your family and he is working THROUGH Jonah to do so much good.

God Bless You Always!

Michelle in MO

Courtney Roth said...

You couldn't have said that better. I definately think you are making the right decision... Tripp's G-tube was the best decision we ever made. You will have CRAZY amounts o snuggle-time!!! I love you guys and pray for you to have peace about the whole situation as well.
All my love and hugs,
Courtney

Devon said...

i know this is a big step for you...i'm praying for your hearts and mind...for jonah to pull through this like the champ he is!

you are an inspiration to me!

Mommyto3 said...

Here uniting. Supporting you along the way.

Trina and Jophie said...

I don't have a lot of time but just wanted to toss out here to ask for them to "TIE" the intubation tube in place like they do for burn patients. Jophie couldn't handle the tape when he was on the vent for about 6 months so the burn unit would come over and do this fancy tying and voila! No tape.... Also on the tube...My son has had his 10 years and I can NOT say enough positive about it. We just hook up pedialyte when he needs hydrated or is sick and it's just like getting an IV in the hospital only your running a drip to the belly. Also you can still do "REAL FOOD" .... Jophie gets a combination of formula and blenderized food. I'm part of a blenderized group that is chalked full of knowledge if you ever are interested or I can just toss you info...When Jophie has a wound we bump up the protein. He gets four 2 hour water infusions in a 24 hour period due to hypernatremia. If not for the tube he'd have to get IV infusions. We also add immunity boosters to his water infusions to help with his immune system and healing ect....He no longer eats anything by mouth because of silent aspiration/silent reflux....Most kids do still like to eat but "pleasure eat" ....So much more enjoyable to feed them things they love rather than have to shove in things they need to keep them alive. Meds go in sooo much easier especially when you have a boatload like my son. We use zofran for gagging/wretching. It works sooo quckly going directly into the tummy and the same goes for all the other meds. I honestly think once you get beyond all the scary bits and pieces you will come to love his mic-key button. I'm betting that's what he gets and those are fairly flush against the skin and barely noticeable...Sorry I'm all over the place but doing this quickly...OK gotta scoot!

Sara said...

Patrice,
I have recently rededicated my life to Christ, and have been reading your blog for a long time now. The verse you posted has become one of my favorites. Learning to give it to God is one of the hardest things I have come across, but Philippians 4:6 has been such a comfort to me. I pray the very best for Jonah, and you and Matt.
xoxox~

Gina Miller said...

Ok I once again can post ?
Sweet girl you continue to seek GOD's face , and he will lead you to do what is best for You, Matt, and baby J. I am in great need of a JONAH fix sooo...if you do not make it by to see me this week..I will call ya and come to see ya one afternoon !LOVE YA !
praying for peace
prayinf for healing

Kirsten said...

I think you guys have made the best decision you possibly can in this situation. I will be thinking or Jonah on thursday and praying for all of you. Put this in God's hands, He can take care of everything.

Lari said...

We'll keeping praying for you, Matt, Jonah and all the medical staff.

thorney said...

God is with you indeed. Keeping you all in our prayers. Lots of love and prayrs for Jonah.

jardinera linda said...

seguro que estás tomando la decisión correcta. la vida será más fácil para todos vosotros.
ánimo!

ChristophersHeart said...

Hi
I don't even remember how I stumbled upon your blog but I've followed Jonah's journey for a while now. My son doesn't have EB but he does have multiple congenital heart defects and a g tube. Your feeding struggles are very familiar to me, we did it for 2 years with my son being "failure to thrive" for lack of eating and always being dehydrated or close. The gtube was the best decision we made. I was worried ahead of time, heard horror stories about the stoma/healing etc. But honestly, it's been simple and uncomplicated. I realize Jonah is coming from a different place than my son, but you don't have to tape the tube. You can get little gtube holders or even some soft mesh cloth (or something you know is safe for his skin). Or sometimes the surgeons will just place the mickey which requires no tape at all. We used Calmoseptine cream and it's amazing and just gives a skin barrier.
Good luck, I hope things go smooth for Jonah. We'll be thinking of you.

Jessi said...

Your story from last year made me cry and get goosebumps...I know God will give you that same peace.
Praying for you three as you approach the 29th.

Nora Lee said...

Praying for God's peace for you and Matt, and his loving protecting hand on Jonah. It sounds like God has already given you peace about the decision for the g-tube. Take care...

Kristen said...

I'm praying. Thanks for sharing your experience with us. God is so good.

A pair and a spare said...

I love your verse at the end. I am in need of that reminder each and every day. It was a good way to start my day today!
I'll be praying for your family and the Dr.s and anesthesiologists as they are preparing for this surgery on your sweet baby Jonah.

Toni :O) said...

Continuing to pray and pray for your sweet Jonut. Hang in there, you are doing great things for your little man and with God by your side, you can do anything!

Julie said...

Patrice~
I have followed you from around the time that Jonah was born (a few days after actually). I admire you so much. I know that people always say "you can do whatever you have to do for your children", but honestly, I'm not sure I could handle what you have to do as Jonah's mom. My 7 year old son has a seizure disorder and while I am ok with it now (since it started when he was 10 hours old, I'm sort of "used to it" now...) I can still be pretty dang pissed at the world when he is going through a rough time. I remember being angry at God for a really long time. And more so, jealous at every one of my friends who had babies and took them home 24 hours after they were born; healthy and fine. Ugh! I know I was a horrible friend at that time...I just could not be around other babies.

Anyhoo - I don't understand your specific situation AT ALL. I just tell you all this so you will know that I am amazed at your strength.

Like you, I have never felt God speak to me directly and clearly much (maybe once). I like to think I have some control in life (knowing that I have NONE) and maybe that's why. But, I always try to remember this...Wherever we are at any given moment, THAT is exactly where God intended for us to be. So, if Jonah has the g-tube surgery, I believe that God intended for him to. Period. No question.

I am praying for Jonah and you...praying for peace and comfort with your decision.

the-mommy-person said...

Patrice, I haven't been in your exact situation, but I have been in horrible, life-changing predicaments and I do know exactly what you mean with how God works and reaches us even when we're too angry to listen He gets a hold of us and gives us a good shake, and tells us what we need to hear. I'm so thankful that He does this. I need a good shakin' now and then to get me out of my pity party or life-absorbing moments. I pray that God will clearly lead you (and it seems He is) and give you and Matt that peace you need. I'm so thankful for such a merciful Father, full of grace when I'm not and compassion when I can't muster any. God's continued blessing on you all!

CastingCares said...

I will pray for your continued peace with your decision, but I am also praying for Jonah to begin eating like a champ until then so he can build up all his strength for the surgery.

From reading your post, I see how the g-tube is necessary for Jonah to continue to stay healthy. And I'm sure that this will not be his last cold. He will begin building up his immune system by getting small colds and viruses while he is young. This will help you endure those without risking his health.

I know that God will once again hold you close and bring you through this.

Continuing to pray,
Shannon

Laura A said...

Hi Patrice- I'm so glad you and Matt have peace and clarity with this - this is what I've been praying for! I'll pray that this peace continues up to, during and after the surgery.

And of course am always praying for sweet Jonah - will ask for God to protect him the whole way through this.

Also praying for the anesthesiologist, surgeons, nurses, etc. That they will not forget that Jonah has to be treated delicately, and that they will listen to you and Matt.

If there's anything else I can do from here, let me know!

Love from TX!
Laura

The Fishers said...

Many prayers for Jonah, you and Matt. Praise God for giving you the strength and peace to make this decision.

Quilting with Jannette said...

I'm so thankful for, and with you, that you feel God's peace going into this upcoming surgery. Know that you are all in my prayers, and I'll add the hospital staff too.
I've never been in your shoes, but I think that the surgery is the right thing to do.

Joye said...

I am so excited for you to feel the peace that comes along with not having to worry about how your child will remain hydrated and nourished. The G-tube is a wonderful gift in that department!

Although I don't understand the EB concerns 1st hand, I do know that you're a great mom who will make sure those doctors do everything the EB friendly way. You are the expert here.

I'm not sure if this will work with Jonah, but we have found a tried & true way to eliminate granulation tissue from Ethan's stoma. We use a piece of split 2x2 gauze (pre-split, not cut by hand -- we have TONS I can send you!) around the tube so that it doesn't rub against his skin. It provides just enough protection and has kept his stoma looking GREAT for the past year. It also catches any nasty junk that may leak out, and prevents it from building up on his skin (thus breaking it down). We change it out twice a day if it's really nasty, but sometimes just once.

Also, you can request for either you or Matt to go back to the OR with Jonah while they put him to sleep. Some parents don't want to do this, but some find it helps with the anxiety of these babies who are starting to learn who strangers are. The OR team has the final say about whether you can or not, but I would be surprised if they told you no.

Ethan is heading into the OR on the 29th, as well, so I'll be praying for both of our sweet boys from now until then!

Jen Burns said...

Praying with you.

Lucky said...

I've just been praying this whole time that the decision will be made with ease and confidence and not under duress. That God will show you clearly what needs to be done. I will continue to pray that whatever direction God leads you will bring your family peace.
PS> You are an awesome Mom. Don't ever lose sight of that! All I'm stressing about is whether to have my daughter's adenoids removed and feeling all "poor me" and then I read your post. Hello wake up call!

Heather said...

Continuing to pray over you all. Praying for a smooth surgery with no complications and a quick recovery. What a blessing it will be for all of you to not have to focus on food/drink. Praying God's peace will completely saturate you and that His hands will guide each person involved.

Redeemed1 said...

Praying for you!

Phyllis said...

Praying for peace, grace and healing.

Wendi Taylor said...

I am praying for peace for you... safety and comfort for Jonah... and wisdom for Dr. S and all of the doctors and nurses who will be involved in treating him before, during, and after the surgery.

in a world surrounded by men said...

Patrice, what a powerful testimony you have and are continuing to build through this trial.

I see your faith refined on the screen. And we know that is far more precious than gold.

You are giving God such glory in this process, and today, I am joining you. We will praise him in advance for what he is about to do.

Awesome news.

Pati @ A Crafty Escape said...

We will be praying for the entire family... that this may bring the "break" that you all SO deserve!

lillymac said...

praying for your family... for peace and answers to be clear... safety and protection for Jonah, and wisdom for the doctors. you are already supermom... anything to life some stress and axiety will be so wonderful for all of you.

WonderWomanWannabe said...

I know this was such a tough decision for you all to make. I'm praying that everything goes smoothly and that God gives you sweet peace about it all.

Maryellen said...

Patrice:
I have no doubt you and Matt will make the best decisions for Jonah's care. Keeping you all in prayer.

Anita Johnson said...

I have marked the surgery day on my calendar and will keep you in our prayers in the days ahead.

Rachelle said...

praying for Jonah (and his mom and dad)

Emily's Blog said...

I don't want to say that I am an expert on feeding tubes, but I have had 2 already, the most recent being placed 8-08, and was surgically removed in 1-10. I had a g-tube as an infant, because I couldn't swallow, and my digestive system didn't work.
I had a j-tube (a feeding tube directly into my small intestine, bypassing my stomach) placed in Aug. of 2008, because my stomach stopped working.
Having that tube saved me. I was able to get nutriton when I couldn't swallow and was in too much pain to eat.
I think getting a tube for Jonah is a great idea. It will help with his nutrition when he doesn't want to eat or it hurts him too bad. Having a g-tube is easy on the skin. After it is in for several months, he'll have a button placed, so you won't have to tape it.

I will be praying for his surgery to go smoothly and for no reaction to the tape and easy IV access.
Can I also ask you to pray for me, as I am having surgery next week, April 22nd. I am having spinal cord surgery, and it is suppose to help me deal with my chronic pain. But this will be my 5th surgery this year, and will be my biggest and hardest to recover from surgery. I am a very hard IV stick too, and that is my biggest fear. Please pray that all goes well, and it works.

chinamoon1420 said...

The same thing happened with me at a very critical point with my son, but not only did I feel the peace, I heard His words. He said "Don't worry, I've got him. He is going to be fine." I felt so at peace and actually felt a warm feeling all over. I knew God had wrapped himself around me or at that point I was able to recognize it.
I will be praying that your choice will be clear and that you will have no doubts about what the right thing is.

Much love

mandi said...

Have you all in my prayers!!

Bethany said...

Hi, Patrice! I found this on another blog. Toward the end, it talks about the decision about a G-Tube, and how wonderful it is. Thought it might encourage you! :)
This is a family who has adopted 3 children internationally, one of whom has Down syndrome.

http://browneyedblessings.blogspot.com/2010/04/feeding-update.html

Kim said...

Is he eventually getting a button, or will he always have a tube? Either way, as a teacher of a kiddo with a g-tube button, I'd advise on working with Jonah (obviously as he gets older! :) ) on not fidgeting with/rotating it. My little guy will just sort of absentmindedly rotate his a lot, which isn't a big deal but could be a problem with Jonah's skin. He's a pretty smart boy though so I'm sure he'll learn fast! :)

It sounds like you're making the best decision for Jonah and for you. I'll be praying for you all!

plovea said...

Hi..

Thanks for sharing your story here, thanks for reminding us that the LORD is always near!!

We're praying this will be a blessing for Jonah!!

Jesus bless you