After weeks, 5 to be exact, of working with the hospital, we finally have a tentative date for Hayden's first procedure. I use the term "working" very loosely because it's mostly been phone tag and countless transfers. One very frustrating thing about working with a hospital this big is that every person has virtually one job and if you don't happen to get that person, you WILL get transferred. I've found myself tearing up a couple of times purely out of frustration. Alone, I don't have time for this but God gives me strength to make "just one more phone call". Last week, I finally got to the right person, who ironically was the first person I talked to in February!
Hayden has a history of acid reflux and as a precaution, he needs to be seen by a Pediatric Gastrointerologist prior to the reconstruction to check the status of the reflux. They will check the reflux by using an Impedence Probe which is inserted through his nose into his throat (sounds terribly uncomfortable to me). It will stay in overnight and then be removed. During the procedure, his ENT will take a look into this airway to determine our course of treatment for the reconstruction. There are two types of reconstruction, single stage and dual stage. Both have their positives, negatives, and risks. We are opting for the single stage because it doesn't involve a temporary tracheostomy tube.
The scary part (and probably the scariest part of this entire procedure for me) is that Hayden will be in a medically induced coma for about a week to allow his throat to begin the healing process. He was sedated like this in the NICU when he was born and I am not looking forward to going through it again. The length of sedation will depend upon how quickly his airway begins to heal. Following the coma, he'll have another 2-3 scopes to check on his healing progress. We're looking at a stay of 3-4 weeks in the hospital in Cincinnati after all is said and done.
At this point, we don't have a full picture of what his treatment plan will look like. Everything is dependent upon what Dr. Cotton finds next month. His procedure is tentatively scheduled for April 22 with an overnight stay in the hospital. If all goes as planned, he will be released on Saturday the 23rd and we'll be home in time to celebrate Easter on Sunday.
As I go through each day, I am encouraged and amazed by all God provides and I know that He will continue to provide and take care of us as we go through this.
I've often heard it said that "God won't give you anything you can't handle". I don't believe that's entirely true. I believe that "God won't give me anything I can't handle WITHOUT HIM". I know that there's no way I could do this without Him and He deserves all the glory for getting us to this place.
"For my yoke is easy and my burden is light." Matthew 11:30
Tuesday, March 22, 2011
Monday, March 21, 2011
Help Arrives in the Form of Laryngotracheal Reconstruction????
Laryngotracheal Reconstruction...it's hard for me to pronouce or spell much less think about my precious Hayden going through the procedure. We first began to consider the surgery in December following Hayden's eighth or ninth hospitalization in less than a year. After countless breathing treatments, steroids, and surgeries, his ENT started to prepare us for the possibility of something more serious. Eager to get my hands on all the information that I could, I began searching for anything that I could find. Unfortunately, I wasn't finding much in the form of "mom talk". I found multiple medical papers, studies, even dr. bios on physicians that had performed the procedure but nothing that told me what to expect as a mom...in terms that I could understand. So, I'm learning this as I go. Many things about this scare me to death but I'm getting more comfortable with it each day.
My goal with this blog is to give other moms out there something to help curb the anxiety that I had every time I thought about his procedure. I just wanted information and I couldn't get enough of it quickly enough. I hope it helps someone as they prepare for the same healing that we are praying for with Hayden.
Hayden was born at 37 weeks and a healthy 7 pounds. Moments after birth, however, his lungs and heart didn't begin functioning as they should (a condition called PPHN). He was rushed to the NICU where they discovered that his lungs were underdeveloped in addition to the PPHN. After a two day roller coaster ride, he was transported by helicopter to Scott & White Hospital in Temple, TX where he would spend the first two weeks of his life.
Being on a ventilator for any length of time notoriously causes scar tissue to develop in the throat. Hayden was on a vent for about a week. When scar tissue develops in a newborn's throat, it causes an already small airway to be even smaller. Multiple surgeries to remove scar tissue and remove his adenoids have not given the relief that we'd hoped for so we are left with two options...Tracheostomy or Laryngotracheal Reconstruction. Laryngotracheal Reconstruction involves grafting a piece of Hayden's rib and forming it to fit into his airway. The graft would then be attached to the base of his airway to widen it and allow him to breathe normally.
We've chosen reconstruction and have been referred to Cincinnati Children's Hospital for surgery in the next couple of months. Cincinnati is one of the premier hospitals in the world for this type of procedure. God has blessed us immensely by providing this option for Hayden and giving us one of the best doctors in the world to care for him.
Coordinating a procedure like this (from 6 hours away) with a research hospital is nothing short of a frustrating and stressful event but I am doing the best I can to get him there. I truly feel like a number and completely lost in a crowd. I know that all will be fine in the end but as you all know it's not easy juggling children, work, and other obligations. Add that to an incredibly frustrating scheduling process with a facility 300 miles away and I'm sure to break down at some point.
I can't wait to get through this in a few months and have an even happier (if that's possible!) and healthier baby boy. He truly is our miracle baby and we are so blessed to have this gift from God.
My goal with this blog is to give other moms out there something to help curb the anxiety that I had every time I thought about his procedure. I just wanted information and I couldn't get enough of it quickly enough. I hope it helps someone as they prepare for the same healing that we are praying for with Hayden.
Hayden was born at 37 weeks and a healthy 7 pounds. Moments after birth, however, his lungs and heart didn't begin functioning as they should (a condition called PPHN). He was rushed to the NICU where they discovered that his lungs were underdeveloped in addition to the PPHN. After a two day roller coaster ride, he was transported by helicopter to Scott & White Hospital in Temple, TX where he would spend the first two weeks of his life.
Being on a ventilator for any length of time notoriously causes scar tissue to develop in the throat. Hayden was on a vent for about a week. When scar tissue develops in a newborn's throat, it causes an already small airway to be even smaller. Multiple surgeries to remove scar tissue and remove his adenoids have not given the relief that we'd hoped for so we are left with two options...Tracheostomy or Laryngotracheal Reconstruction. Laryngotracheal Reconstruction involves grafting a piece of Hayden's rib and forming it to fit into his airway. The graft would then be attached to the base of his airway to widen it and allow him to breathe normally.
We've chosen reconstruction and have been referred to Cincinnati Children's Hospital for surgery in the next couple of months. Cincinnati is one of the premier hospitals in the world for this type of procedure. God has blessed us immensely by providing this option for Hayden and giving us one of the best doctors in the world to care for him.
Coordinating a procedure like this (from 6 hours away) with a research hospital is nothing short of a frustrating and stressful event but I am doing the best I can to get him there. I truly feel like a number and completely lost in a crowd. I know that all will be fine in the end but as you all know it's not easy juggling children, work, and other obligations. Add that to an incredibly frustrating scheduling process with a facility 300 miles away and I'm sure to break down at some point.
I can't wait to get through this in a few months and have an even happier (if that's possible!) and healthier baby boy. He truly is our miracle baby and we are so blessed to have this gift from God.
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