Wednesday, August 3, 2011

The temporary pacer

I like to keep the blinds open when we are inpatient. I like to look out to see the sun peak through the early morning hours and evolve through the day until the moon seeps through the slats of the encased miniature blinds. The hazy crescent moon dimly shines through our window tonight as I listen to the rhythmic sucking sounds of a little paci boy falling asleep...hopefully (and sadly) one of the last nights I hear that sound of confirmation that the little guy is asleep, as his days with his paci are coming to a close.
I have so many emotions running rampant this evening, that it is difficult to explain how this admission has gone. We love the people here...from the bottom of our hearts, we genuinely love so many of the medical personnel we encounter during each of our visits. They are all amazingly special people who will help Shands to rise high among favored Children's hospitals. Amidst the circumstances, I am so thankful we have had the opportunity to meet such loving and caring individuals. Each one of them add a sense of comfort to a chaotic medical world, and they are all incredible blessings in our life.

Nafey boy was admitted Monday afternoon and taken down Tuesday morning for the placement of the temporary gastric stimulator. He handled the procedure very well. Unfortunately, he got sick a few times during the day and didn't tolerate eating too well. He was maxed out on zofran until yesterday evening, but after that last dose, he seemed to be able to tolerate his feeds (formula) quite a bit better. I was kind of discouraged last night at his reaction to the stimulator, but we wanted to give him a little bit more time to show improvement.
With gastric electrical stimulation, a patient who is going to respond to this type of treatment should show a dramatic difference in symptoms within 12-24 hours of placement. Our surgeon explained that he had a patient last week who could not tolerate food without having severe symptoms of gastroparesis and she was eating cheeseburgers and asking for more the night of the placement of her temporary stimulator.

Nate's nausea seemed to be gone this morning, but he complained about tasting his meds when we gave them to him in his tube...something that shouldn't be happening. He ate a teeny bit of breakfast and seemed fine. He had good energy and was ornery as anything...he was doing great! It was then that I was getting excited that maybe the stimulator was working. I had not let myself picture how much better of a life Nate would have if the stimulator was a huge success until that moment. To picture him being able to eat anything he wanted without pain or bloating or discomfort or nausea was so exhilarating. Oh, how I want so badly for that to happen! He went down for a nap mid-morning, and I bumped his feeding rate up by 10mls with plans to bump it up even more when he woke because I was convinced that the stimulator was starting to do amazing things for the little guy's stomach.Unfortunately, he started complaining that his stomach hurt a few minutes after he woke from his nap. He asked for meds and I turned down his rate again. He had a few random gags through the afternoon but never asked for zofran. He ate a couple bites of pizza and 2 saltine crackers a while after his pump feed was finished. I was pretty bummed about how little he had eaten throughout the day and how he responded to the small bumped rate past his "comfort zone" rate in his feed. He seemed to want to eat, but was done after taking a bite of something. Finally right before bedtime, he asked for some dry cereal and ate quite a bit.

The problem is that nothing has changed. Nothing. When talking with our surgeon this afternoon, I explained that the emotions of all of this are up and down...I wanted him to respond to this pacer so much that sometimes I think he may indeed be doing well with it. But after a while, I realize that everything is the same. I talk myself into the fact that he just had anesthesia yesterday and his stomach just needs more time, but then I realize that everyone else who responds to the pacer does it within a few hours because it is doing the extra stimulation for the stomach to move food through.

We are not giving up hope on the pacer quite yet, but our surgeon did say this afternoon that Nate may be one of the select few who do not respond to this form of treatment. Even though we knew this was a very real possibility, it was still like a punch in the gut to hear it.

We are going to be heading home tomorrow to test the stimulator more for a few days. We want to see how he responds outside the hospital, if things change with a little time, and whether we can get an accurate portrayal of how Nathan's stomach is doing. We will report the findings back in a few days, at which we will then have a permanent pacer implanted if we see a dramatic change for the better, or have this temporary one removed and his g-tube switched to a gj-tube.

Its been a long week so filled with emotional highs and lows. I pray that God will give us wisdom and irrefutable evidence to make our next decisions.


september on August 4, 2011 at 8:48 AM said...

Nathan is so lucky to have you as an advocate for him--to have someone pushing so hard to find the best solution to best help his little body grow and develop. Prayers that Nathan can start feeling better soon with the permanent solution that's right for him.

Kyla on August 4, 2011 at 12:14 PM said...

I hope that some normal time at home will show an improvement with the pacer, but if'll know you've tried everything to help this work for him and feel confident that the g/j will be the right call. Praying for you and your sweet little man!

Amanda on August 4, 2011 at 7:03 PM said...

Thinking of you guys tonight. Had to laugh today at my email from UMDF about "Spend Sunday in Bed" for Mito Awareness. I think we'll be able to actually pull that one off here at our house. Would love for us Moms to get together again soon!!

Jen on August 4, 2011 at 9:15 PM said...

Sending lots of good thoughts and prayers your way!

The Gustafson Family on August 6, 2011 at 12:24 AM said...

I just got caught up on all that's been going on with Nathan & am sending lots of love and prayers your way. One thing that might help his reflux is to vent his g-tube. That's what we do for Nicholas when he starts to reflux and it makes him feel so much better. I am glad thar he was able to eat more and is starting to feel better! What a sweet smile he has.

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