Sunday, October 9, 2011

Friends becoming like family

It continues to amaze me how God places people in our lives at the perfect times that will become incredibly influential in many aspects of our lives in many different ways...and we don't even realize it at the time of the initial meeting...
At the end of last year, I was made aware that a family that I had kind of known from an online medical forum were coming to our city for an experimental treatment for her daughter's severe gastroparesis. We met and took them from their hotel to their first appt with a surgeon that we had never met or even heard of but would later become an integral part of our son's life...little did we know what was to come.

When the daughter, who shares the name of our oldest: Abigail, was hospitalized for an extended time in January/February, we took the son (Noah) under our wings and into our home during that time because he could not spend the night in the hospital. He quickly became part of our family.
Looking back over that time when the Millers were introduced into our lives, I am amazed at God's hand in our meeting. You see, Abigail was having a new treatment implemented...a temporary and later, a permanent gastric stimulator placed. Her mom and I talked extensively about the ins and outs of this new device and treatment, and we literally walked this journey with them during the weeks they "lived" in our city. Although Nathan and Abigail shared the same diagnosis of gastroparesis, this treatment was seemingly only used on kids with idiopathic and viral-induced gastroparesis at this time, so I knew he wasn't a candidate for it. I never ever imagined that just a few short months later, we would meet the exact same surgeon for a tube placement, and that surgeon bring up the possibility of trialing Nathan with the gastric stimulator. I never expected to have that same opportunity.
Its amazing how God prepares you in intricate ways to tackle the trials of your future.

The Millers made another trip to Gainesville a little over a week ago. Unfortunately, Abigail's permanent stimulator has failed...a physically and emotionally taxing phenomenon that we know can happen for reasons no one truly knows. Our surgeon has said that it seems to happen after a really bad virus or for unknown reasons in his very few kids who have more going on than just gastroparesis (meaning a different disorder is causing the paralysis of the stomach). We know that Nathan is at an increased risk of not responding to the permanent stimulator...or responding for a while and losing that response. This is what happened to Abigail. She initially responded and then lost the response after a few months and after a tough virus.
After implanting a temporary stimulator again to test the response of the leads placed in the mucosa of the stomach as opposed to the outside of the stomach with the permanent placement of the leads, Abigail started responding again. This is the second patient of our surgeon who has done this, and it has prompted he and the doctor who essentially created the GI stimulator to start the works of creating a new permanent gastric stimulator where the leads are able to be placed in the mucosa of the stomach. Hopefully, this new way of placing the permanent stimulator will be in the works in a few months.

Anyway, we had a great week with the Millers. It was a wonderful time of  reconnecting and talking about anything and everything under the sun. I genuinely love her kids and enjoy having her, Abigail and Noah here with us. My Abby and her Abigail have become very close friends over the past few months, and Nathan looks up to Noah as a big brother and loves every little thing about him. I thoroughly enjoyed having another mother who understands the details of raising a child with multiple medical complications and "gets" the unusual workings of this gastric stimulator. This week was much needed for both of us, I believe. Please be in prayer for Abigail. The temporary stimulator will only last for about a month before the leads become dislodged, and when that happens, she will have to stop eating again and rely on j-feeds for nourishment until she comes back for another temp stimulator...this scenario will continue until the docs are able to figure out how to create the new stim.
And speaking of this, Nate will be admitted to Shands tomorrow and have the permanent GI stimulator placed on Tuesday. His response to the temporary one has been amazing to witness. We are quite confident that the leads of this last temporary stim came dislodged on Wednesday, prompting his symptoms to come back with a vengeance. The poor guy vomited 4 times on Wednesday and has done the same at least twice a day since then, along with lots of retching, pain and quite a lot of bloating. The sudden onset of symptoms always gives us peace of mind that we are making the right decision for Nathan...its literally incredible to see how well this has worked. We pray that the permanent placement will work just as well.


julie on October 9, 2011 at 11:53 PM said...

God truly does prepare our hearts for the trials of our future through the experiences of our past . Praying for little Nathan tomorrow and during his surgery on Tuesday.

Dani on October 10, 2011 at 1:44 AM said...

We will be in prayer for his surgery tomorrow and Tues, and looking forward to a good report from you.

~Jana~ on October 10, 2011 at 2:44 AM said...

All so true! Lots of prayers sent your way for an easy surgery/recovery and success of this device. I so hope it works for Nate. This gives me hope for my pun'kins GI problems and future treatments.

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