Thursday, June 9, 2011

Some tough decisions ahead

I have so many thoughts and emotions going through my head that it is difficult to put it all down in words. Sometimes the emotions of all of this is indeed too much to handle. Sometimes we grow weary of having to make difficult decisions and not knowing if we took the right step or not. Sometimes we wish there was a road map that showed us what exact treatments we should try. Sometimes we break down from the weight of watching so many of our little friends pass from this earth. Sometimes we beg for God to make all of this just vanish.

Oftentimes, our faith is weak. Our trust wanes. Our outlook of the future on this earth is full of heart break. Oftentimes, we are reminded that we must surrender our fears to our omniscient God.

"Nevertheless I am continually with thee: thou hast holden me by my right hand. Thou shalt guide me with thy counsel, and afterward receive me to glory." Psalm 73: 23-24We met with Nathan's surgeon this morning. He was a delightful man who smiled a lot and seemed to have a good sense of humor. I like it when doctors make you feel comfortable around them, especially during the initial visit. After being told by several doctors that Nathan needed to have a GJ tube placed instead of a G tube, this surgeon was the first who shared my hesitancy on that plan of action and voiced his reasoning that gave me the eerie sense that he had been camping out in the "thinking portion" of my brain for a while.

Let me explain why I was never fully comfortable jumping straight to a GJ tube...(bare with me; it may get rather technical and wordy through here.)

When you are part of a small online community of parents raising kids with mito, you learn an awful lot from each other. One of the hard lessons I have learned over the past couple of years is that for the kids with worsening GI dysmotility, there are only a few steps you can take until you plum run out of steps. The main steps (with some variations along the way for some of the kiddos) is a g-tube, then a gj tube when the g-tube fails, then TPN (total parental nutrition) through central access when feeding through the jejunum fails. Due to the high sugar content in TPN and the fact that bacteria love foreign objects in the body (and throw in the fact that some kids seem to translocate nasty gut bacteria into their lines as a result from the dysmotility), TPN and mito is an extremely risky combination. A central line infection can cause sepsis and take the life of an immune compromised mito kid quicker than you can shake a stick at it.TPN scares me. Central access lines scare me. Worsening GI dysmotility scares me.

If feeding through the jejunum fails, central access and TPN is the next step. So, maybe you can understand my hesitancy of skipping straight to the GJ without even trying a g-tube. We need to at least let Nathan show us how he reacts to having a g-tube before we automatically deem it as a failure.

But let me back up a sec and tell you the other doctors view on this... I mentioned a while back that Nate's gastric emptying study in Houston was significantly delayed across the board while he was off his motility meds for a couple of days. We recently repeated that test while he was on his meds to compare the difference. Much to our surprise, the results were a tad worse than they were in Houston, and again showed significant GI dysmotility across the board. Obviously, his prokinetic (the third we have tried in 2 years) was not working.
So, we have reached a point where his stomach just can not make the adequate strength and frequency of contractions to move food through efficiently. Why do we still want to try a g-tube instead of GJ? Well, because the stomach moves liquid through differently than solids. We know Nate doesn't handle solid food too well, but we have no idea what his GI tract will do with elemental formula, as it is easier to move through and digest. His surgeon and I feel like we at least need to give him a run with a g-tube to see if it helps. Another perk is that I can replace a g-tube at home if this one should pop out or needs changing...a GJ has to be replaced in the OR or IR.

Should he not be able to tolerate the g-tube like we are hoping, it will be a fairly quick procedure for the surgeon to guide in a GJ tube in the same stoma created for the g-tube.
And to make this post even lengthier, after talking about the tube placement surgery, the surgeon surprised me with his next proposal. He said that his desire was to try Gastric Electrical Stimulation on Nathan...essentially by placing a gastric stimulator on Nathan's stomach to cause it to contract and hopefully help move food through like it should. Shands and Nationwide Childrens in Columbus, OH are the only two hospitals that have recently been performing this new form of treatment on pediatric patients with gastroparesis.

The problem that has had my head spinning all day with unanswerable questions, tough emotions, and doubt and hope at the same time is that we are not sure how this treatment will work on a child with mito. The surgeon mentioned that due to the nature of the disease, the pacer may not work. And if it does work, it probably won't last his entire life. But he believes that if it does indeed work, it could potentially help preserve his gut function for a longer time. He said that he believes that Nathan is a good candidate for the stimulator placement.

If we agree to the treatment, he will have the temporary stimulator leads placed through the stoma for his g-tube after it has healed while the actual device (looks like a pacemaker) is taped to the outside of his belly. The temporary stim will last around a month. This will be the time when we should be able to tell if it is working or not. If it does work, he will have a permanent stimulator placed inside his body with the leads on his stomach.
Now, one of the problems is that there is a risk of infection for any foreign object in the body, and infection and mito are enemies, as it saps the body of energy. But if it works, it could potentially be huge for Nate. But we don't know if it works with diseases of energy metabolism, where the disease originates in the cells. But how do we know it won't work unless we try it? But why does Nathan have to be a guinea pig?

You see where my frustration comes into play? These decisions are so very difficult to make, especially when even our leading doctors aren't quite equipped with the knowledge of how to lead us through this due to the fact that it is such a new treatment. But it is times like this that make me remember that God has lead us through so much over the past few years. He has guided our hearts and minds through this entire journey, and he will not forsake us through this difficult fork in the road. I pray that he will continue to guide us, for we need it so desperately.

I used to think that it was a hard decision to pick out which restaurant we should go to when Jay and I were dating. That is comical to think about when you put it against having to make numerous decisions that could positively or negatively influence the life of your child. My, how things have changed over the years.


Roeh Family Update on June 9, 2011 at 11:21 PM said...


Praying for you as you make these decisions...none are clear. I will pray that you will be directed and feel peace about each step and each hard decision.


Nicole on June 10, 2011 at 12:28 AM said...

You're right, these decisions are hard and it's so tough to have to make them. I pray that you will feel His direction in your choices and that you can feel at peace with them. Most of all, I pray that they'll work!


Debbie on June 10, 2011 at 1:13 AM said...

God is in control....he can make our wrong decisions right....he can lead us to the right path as well...I will be praying for clarity ....that you feel peace with which ever choice you make, and that the amount of pressure that you are feeling will let parent should have to contemplate so much....but we mito families do....your surrounded by prayers and support!

Heather on June 10, 2011 at 9:20 AM said...

You are so smart to be thinking of all these options and really weighing them out. It sounds like your gut feelings (no pun intended, haha) are right on. You are so right about trying the G and then it's so easy to switch to the GJ if necessary. Going from the G to the GJ was very hard for me emotionally because my mind works the way yours does...G then GJ then what???? It's scary to think about. Praying for absolute clarity for you!

Anonymous said...

I am a fellow MitoMom (to Nicholas, 3 1/2) I have been following your blog for about a month now. This must be such a frustrating time for you and oh the decisions... we face them all the time with seizure control. You just want to scream! I'm sure your faith will lead you in the right direction and like you said - you cn always try the first step and move to the next if you need to.


P.S. Your kids are so cute and I just want to squeeze that little face of Nathan's - it's ridiculous how gorgeous he is!

Amanda on June 10, 2011 at 11:45 AM said...

Amber - I think you are doing an excellent job of weighing it all and processing everything. I wonder if you have the same shands surgeon who did Sam's. We had to go to the GJ during one of his last illness/ GI shutdown periods and I had a hard time with that transition. I am very interested in this stimulator though.. I will want to hear how it goes so maybe we can ask questions about this too. I will pray you feel good about your ultimate decisions. I agree that you should try G first.. it is a hassle to have to put a GJ back in. We actually have to board a plane for ours since they don't have the GJ button tools here locally to replace it..

Heidi on June 10, 2011 at 7:58 PM said...

(((hugs))) Sorry youre faced with this decision. I like the thought of waiting on the GJ and give the G a chance for Nate, it can be switched pretty easily if he needs it down the road.

Jack has had his G since he was 2. He has done so much better and has gained the most weight when we switched his formula to Elecare. His gut doesnt have to work that hard. When he eats chips (the only food he allows in his mouth!) he gets tummy aches and really doesnt do as well with solids.

I pray that he does well with the G and if you decide of the stimilator, that keeps his little tummy working longer. I cant wait to learn more about it. HUGS and prayers always for you family-
Heidi & Jack. (ps, how much nicer will it be to get those meds in while he sleeps!)

Kyla on June 10, 2011 at 9:44 PM said...

I think it is a great call to start with a g-button, for all of the reasons you listed. It is tough making these decisions for our kids, but for KayTar the g-button was something I agonized over and it has been the BEST thing we've ever done for her. She loves it and we love it...and she's thriving since it was placed.

Good luck with all of this as you make your decisions and move forward with it all.

Sarah on June 10, 2011 at 10:26 PM said...

Saying lots of prayers for you as you make these choices. Nate could be the little man to forge the way for so many kids. Either way, he is a miracle and your choice will be the right one. Lots of love,


Amber on June 10, 2011 at 10:41 PM said...

Thanks guys! Your support means so much!!

Amanda, our surgeon is Dr. Islam. I really, really like him. He thinks outside the box, and that is what we need in situations like our kids!! Have you guys thought about coming back to G'ville?

Jen on June 11, 2011 at 8:34 AM said...

I will be keeping you and Nate in my prayers, as always.

MightyMitoMom on June 15, 2011 at 3:10 PM said...

Amber, You are such a thoughtful, smart mama.

Our little (mito baby) Molly's g-tube was working with elemental formula from age 2 months to 17 months. A few days ago her stomach totally quit functioning. I came home yesterday from the hospital with a GJ and she is now tolerating more volume than ever before in her life. We don't know what is ahead, but are learning to live one day at a time--thankful for the good days.

God gives you much wisdom in this journey and I thank you for sharing it online.

Molly's Mom, Amy
Care Page: LittleMissMollyPop

oh amanda {impress your kids} on June 20, 2011 at 10:16 PM said...

Girlfriend, I know this is an old post and I haven't commented in forever. Just wanted you to know how much I love you guys and am always praying for you.

Praying wisdom and protection and healing and confidence and power & more!


3boysmommy on August 26, 2011 at 2:12 PM said...

What a beautiful blog. I came across this this morning. We are facing some hard decisions right now, too, so I could relate to this post. Thank you for writing about your children for other mamas like me to read. I have 3 kids- a child w/ autism & bipolar, a typical kiddo, and then a little boy with suspected mito (current dx- gastroparesis, autism and cerebral palsy). Take care.

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