Friday, July 29, 2011

The next step

Seems I posted the "paci bon voyage" post about a week too soon. The good news is that all this talk of getting rid of the plug is helping the little guy deal with it better. The other good news for him is that he gets to keep it for about a week longer than we had planned with a new date of riddance for next weekend...Nathan will be admitted to Shands again on Monday for a few days.

It has been a bit difficult to know which way to go with his treatment at this point. Some days he does okay with the g-tube...some days he looks really good. But then there are other days where he clearly struggles with pain and horrible reflux and feeling "sick", like he describes it. He understands now that zofran helps him when he feels sick, and he'll ask for it when it gets pretty bad. The bloating is still tough on him at times...usually if he eats something by mouth or is having an especially rough day with motility.
His reflux has gotten pretty bad. Our wonderful surgeon did the surgery in a way that should not cause any additional reflux, so the consensus is that we are just pumping him full of so much more volume with no where for it go but refluxing up until it finally starts to empty. This would be why he is gulping and coughing and hiccuping so much. We've doubled his reflux meds and are at the highest rate of his motility med, even though that has shown that it really does nothing to speed things up anyway. He has recently started complaining that his meds taste nasty and requesting something to drink to wash away the taste, even though I give them through the med port of his g-tube.

The good thing is that he has put on a little weight! One scale showed that he put on a pound since his surgery and the other showed that he put on 1/2 a pound, but it is weight gain nonetheless. I just hate that it requires so much daily discomfort and pain to get the adequate nutrition into him. I have mentioned before that one of the hardest aspects of this disease is that Nathan and others suffering from mito have to learn to live with a degree of daily pain and discomfort. There are so many times that Nate says that he hurts, and all we can say is "I'm sorry, hun." So it is difficult to know when to continue to say "I'm sorry, hun" or when to intervene with the next step of trying to help bring relief...all while not knowing if you are making the right decision or not.
So, we are at a crossroads, as our surgeon put it. We know that in order for Nathan to tolerate all of this better, we are going to have to make some changes. Our GI doctors were completely correct in their prediction that he wouldn't tolerate just a g-tube, but everyone was supportive in us trying...I appreciate that. And I am extremely thankful for the next step in this journey...

Our children's hospital is one of two hospitals that is currently offering a gastric stimulator for peds patients: a pacer device that helps to stimulate contractions in the stomach to move food. Like I had written earlier, I didn't think that Nate would be eligible for it, but our surgeon said that he wants to try it for him. The success rate for the kids that responded favorably to the temporary pacer is remarkable. The question is whether Nathan will respond to the temporary pacer or not. We are optimistically hopeful and prayerful that this will be the treatment that helps with his struggles against dysmotility...all while being realistic that it may not bring the relief. But we, our surgeon and GI team, and numerous other docs that we have talked to have all said that it is worth a try. Due to the nature of mito, it may work...or it may not.If it doesn't work, our surgeon said that we need to make the decision to either do a fundoplication (where Nate would undergo a surgery that would essentially squeeze the top of his esophagus to prevent reflux) or go ahead and switch to the GJ-tube...the fork in the road if the pacer doesn't work. Honestly, I don't want to do a fundo based off two main reasons...1) Nate's lungs sound good, so it doesn't seem like he is aspirating, and 2) when you have dysmotility on one end of the GI tract, you really don't want to almost close up the other end. So, if the pacer doesn't work, we will more than likely switch to a GJ tube and get his GI system in better working order before the illness season strikes again and we lose more ground.The plan is for Nate to be admitted on Monday afternoon for IV fluids through the night, then he will go down to the OR on Tuesday to have the temporary pacer implanted. The leads of the stimulator will go through his g-tube stoma and attached to his stomach. The actual stimulator will then be taped to the outside of his belly. Our surgeon said that they typically see improvement if it happens within the first 24 hours, but he wants to give Nathan a good 1-2 weeks to see how he really responds to it. If all goes well after the placement, we should be able to head home within a day or two. Once we know how his body is responding to the extra stimulation, we will then be able to make a better decision of the next step.
We are at a difficult spot in caring for Nathan in that we don't exactly have a rule book or set treatment that will make him better. I had a good conversation with his pulmonologist the other day where we discussed that taking care of Nate from a medical standpoint in more like an art rather than a science because his body and this disease don't play by a set of predictable rules. That is tough to approach at times when we are trying to figure out what to do.

But it is times like these that I am indeed thankful that we have the love of our heavenly father who created our precious son...who has numbered every hair on his head, who is familiar with each cell in his body, who has the foreknowledge of the course his life will take. And we continue to pray that he will give us guidance in knowing how to proceed in the care of our child...of his child. Please keep my little man in your prayers next week...that this pacer will work, and that God will give him grace through another procedure.


matthew on July 30, 2011 at 3:30 PM said...

Looks like Nate is dressing like his Dad again...

Kyla on July 30, 2011 at 6:59 PM said...

The best of luck with this next step. I really, really hope it helps Nathan!

Love the superhero photos. He's SUPER adorable.

Anonymous said...

Amber, You and Jay are having to face some of the toughest decisions I've seen!!! I pray that God leads you and helps you to feel at peace! You are such a wonderful mother and we are in constant prayer for Nathan and your family!!! If you ever need me to watch the girls or anything just let me know!!! Love you, Amanda McCook

Cassie on July 31, 2011 at 8:36 AM said...

best superhero pics! of just a super kid!! :)

Anonymous said...

Oh my. He is just the cutest little boy on the planet!

We've heard horror stories about the fundo. So glad your docs aren't pushing it on you. Ours pushed us and we resisted. Our backup plan was Dr. P. in Cincinnati who would fight for us to NOT have do that! Thankfully we didn't have to travel and go that route but we would have.

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