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Three Ways to Help Our Family as Airway Surgery Approaches

Three Ways to Help Our Family as Airway Surgery Approaches

Nathaniel's airway surgery is about a month away. Now that Christmas and New Year's is over, it seems close. We wanted to share tentative plans and the needs our family has as the date approaches.

Both Rich and I will go to Cincinnati for the surgery. We have been told to expect a five hour surgery and for Nathaniel to spend a week in the Critical Airway ICU afterwards. Nathaniel will have a new stoma and possibly new medical care routines that we will learn before his discharge. We have been asked to stay in the Cincinnati area for a second week to be close to the surgeon and hospital in the event of complications.  There are three different ways you can help our family now.

Pray

Please pray for Nathaniel's health this month. Nathaniel is scheduled for pre-surgery tests in St. Louis in a couple weeks. He needs to stay healthy for these tests and the surgery. Even a simple cold virus will delay our appointments. Some people have found it helpful to wear a wrist band to remind them to pray for Nathaniel and our family - click on that link above to order.

A second prayer request is for Rich and I to have peace with our decision. We have chosen a drastic measure in hopes of protecting Nathaniel from a significant oxygen deprivation accident. It has been a difficult decision to make as a parent; the waiting opens a window for second guessing and discouragement.

We will share more prayer requests as surgery approaches both here and on the Hold My Words Facebook page.

Make a Meal

After our September trip to Cincinnati, we lost most of our private duty nursing support. Our back to back trips in August and September created a significant interruption in our nurses' income. The agency has not been able to staff our requested day hours or replace the full time night nurse position we have been missing since last summer. Nurses we have interviewed are reluctant to join our team knowing there is another long trip scheduled that will likely cause an interruption to his or her wages. We currently have less than a third of our authorized nursing shifts filled.

There have been benefits to fewer caregivers. Multiple people have told us that Nathaniel seems calmer and more content that ever before. Having only Rich and I fill both parent and nurse roles has increased Nathaniel's sense of security. He has grown in development areas like playing by himself. But the last few months have taken a toll on Rich and me as we rotate other responsibilities, Rich's work, sleeping, and being available for Nathaniel's needs around the clock. A number of friends have provided frozen meals to help us through this season.  If you are in the St. Louis area and would like to join our care team, please email our friend, Julie, for more information at: Julie@stlspecialneeds.com

Share in Our Expenses

We have been asked numerous times by concerned friends and family about the cost of the Cincinnati trips. To date, all of Nathaniel's medical expenses have been met through his insurance. We anticipate the same for his airway surgery.  We have out of pocket travel, food, and lodging costs with each trip. God has been abundantly faithful to meet our needs as we care for Nathaniel. He has provided through donations of others towards this end. Looking ahead, we anticipate the February trip will cost more than our previous trips as Rich will take eleven days off work without income. Update Post Surgery: Financial needs have been met.

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