Tuesday, April 12, 2011

Mercies and guidance when you least expect it

Sometimes I can not even begin to accurately explain how God has directed our lives regarding Nathan's care. From what seems to be the subtleties of his care, such as the fact that a lot of his specialists here are heads of their departments and the best around to what we think as the "big things", there is no doubt whatsoever that God has been in control of Nathan's life and medical care since before his birth.

Bur there have been a couple of "things" regarding Nate's care that have been met with resistance lately, either by us or by insurance, but God has intervened when we least expected it...Most 3 year olds walk or run everywhere they want to go. While Nathan is perfectly capable of walking and running, he for sure does not last long and does not usually walk any longish-distance willingly unless his feels absolutely superb, which seems to be a bit rare these days. He is just so tired a lot of the time. Since he is basically the size of a 2 year old, we have gotten away with carrying him everywhere or keeping him in the jogging stroller. I say all of this because I have been shying away from acknowledging that we have needed a medical stroller for some time now, even though it would be so much easier and comfortable for Nate and our oxygen systems that accompany us everywhere.

I have known that an adaptive stroller would make life so much easier for us and Nathan, but I have been so reluctant to admit it. I don't know why. Maybe because it is one more medical equipment we will bring into our lives? I don't know, but I do know that while my mind was being changed to knowing that we needed something to help, it was also around the same time that I was talking to a close friend who offered something I could have never imagined. This friend had lost her son to the same disease quite a few months previously. Among the few remaining pieces of her son's medical equipment was an adaptive stroller. Her question was whether we would want it...

I cried, as it was an amazing answer to a prayer of guidance that I have just recently started uttering. I informed my good friend that I would be more than honored and humbled for my son to ride in the seat that her son had done so many times during his days of this earth. An answer to prayer...and even though I know it will be tough to transition Nate to a medical stroller, I also know that it is indeed time. And I am so thankful that my son will ride in the seat that his friend once rode multiple times while his life blessed those in which he encountered.During this same time, we had been trying so hard for many months to get Nathan a portable oxygen system. With each strong attempt, we had either been denied or directed to a different avenue. At our last denial, I had given up hope...we had tried countless times, prayed countless prayers, cried many frustrated tears, and we were getting no where. With the last denial, I had thanked God for supplying us with the home concentrator and multiple heavy tanks we were given each week and month to make sure Nathan's needs were met. While his needs were indeed being met, I would not complain of our circumstances and make do with the same scenario we had been given for the past year and a half.Fast forward to today when pulling into the medical complex while going to one of Nathan's appts, I received a call from a long-distance friend. This precious friend lost her son to mito almost 6 weeks ago. In her call, she asked if we would like to take their portable concentrator system that they had used with their darling son. The system is infinitely better than the tanks we carry on a daily basis to our activities and appts, and one that we have only dreamed of being able to own some day. What do you say to someone who is offering you something you have wanted and needed for so long? I was humbled and honored, once again.
I pulled into the parking garage of the medical center and just cried, thanking God for his mercy and goodness through these circumstances in our life. I am incredibly humbled to know that my son will now sit in the seat where one of his friends sat and use the equipment of another of his mito buddies, while both are now in heaven rejoicing with our Savior. These are the circumstances where words seem to fail in relation to the emotions that are felt during this time.

I am thankful...so thankful. And humbled...so humbled.In other news, Nate has had quite a few appts lately in which we have discussed numerous parts of his body systems affected by his disease. We have added a new med to help with his GI dysmotility...miralax, to hopefully keep him cleaned out enough to decrease his bloating and discomfort. Nate will be participating in a Mito/GI study in Houston next week, and we will also see a GI doc there. We saw our neurologist a few weeks ago, where we had many questions that we are looking forward to asking our mito neurologist. And we also met with cardiology today. Nate has always had a heart murmur and has recently shown a heart arrhythmia during his last admission, so I was anxious to see if anything has changed since our last visit with our home cardio team. Thankfully, the structure of his heart is still the same, and we will talk to the team in Houston to decide if we need to look further into the seemingly isolated arrhythmia in the hospital.Nate and I will head to Houston on Saturday. We are driving this time...flying and renting a car is getting ridiculously expensive, and while fuel is going for an arm and a leg these days, it definitely doesn't compare to the other option. Nate does great in the car these days, and I am honestly looking forward to some (some meaning 13 hours) time alone with my thoughts. We will be staying in hotel de la Knight and really looking forward to being able to catch up with close friends during the next week. Like I mentioned previously, Nate will be undergoing the gastric emptying study on Monday, along with seeing GI, seeing the mito neuro on Tuesday, and the immuno in the clinic on Wednesday. We should head for home Thursday morning. While I am not looking forward to the travel time or time away from my family, I am looking forward to spending time with good friends and hopefully getting some answers to some of the nagging questions we have had recently. This is why we go to Houston every 6 months.


Jill on April 13, 2011 at 7:25 AM said...

Thankful to hear of your "Pennies from Heaven"! Wish we were close enough to help during your travel week. Know that you guys are in our prayers.
Love, Jill

Heidi on April 13, 2011 at 7:27 AM said...

awww, great news about the concentrator! and yes going from stroller to an adaptive stroller wasnt easy for me too, just part of that "mommy denial" Praying your travels are safe and you get some good answers. Say hello to Missy for me, hugs and prayers always for her family too-
Heidi & Jack

Dawn Sutphin (Sara Mom) said...

What a wonderful answer to prayer. God knows what we need and always answers in His time. I want to say I understand the difficulty of transitioning from one thing to another(ex. stroller, new medical issues). We are experiencing this with our daughter right now. We are praying for wisdom. You are doing a wonderful job with nathan and your family.

Wanda on April 13, 2011 at 9:03 PM said...

God is good! Praying for safe trip!

Kyla on April 16, 2011 at 6:20 PM said...

What perfect timing. That is very touching.

We live in Houston and will be seeing the mito doc for the first time this summer, I wish I had tie to meet up with you and the other ladies while you are here this week!

The Gustafson Family on April 18, 2011 at 1:38 AM said...

How wonderful to have the equipment Nate so needs donated to you! God is surely giving you what you need! Nicholas also gets a small dose of miralax each day and it has done wonders for his digestive system. I hope it helps your son too :)

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