My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Sunday, May 2, 2010

Diagnosis: Subglotic Stenosis

Twenty Years Joyce

The initial hypotheses by the various doctors did not pan out. An echo revealed that Sarah's heart was healing perfectly. Her lungs although damaged, would not be the cause of her airway collapsing. The diagnosis: subglotic stenosis. I truly am in awe as I sit here today and use my computer to read more about this condition. I know it is so hard to imagine that we had none of this at our disposal. No internet, no parent chat rooms, no blogs or online medical search engines. Our only source of information was what the doctors told us and the few medical reference books at the public library.

So what is subglotic stenosis? It is basically the narrowing of the airway after prolonged intubation. Reference sources today state that an infant can be safely intubated for approximately 5-7 days. Anything longer, can lead to further airway problems. If a patient needs to be re-intubated, complications are more likely. Sarah was intubated for about 21 days, then re-intubated, then re-intubated and that tube was pulled out by her little foot, needless-to-say not the best of circumstances. And now she was intubated again after this last episode.

This photo shows were the narrowing usually occurs. Sarah had complications before we came home this last time. They did do a procedure known as a cricoid split in an attempt to make the area larger, but it was not successful.

So our only chance of getting her off the ventilator was to give her a trach. The doctors gave us a short amount of time to make this decision. John and I labored over the pros and cons. It truly seemed like a catch twenty two type of decision. Damned if you do, damned of you don't. We finally signed the papers and they wheeled her into surgery almost immediately.

When they called us back to see her in the recovery room, I was afraid to go. I was scared to death to see what had been done to my baby girl. I expected it to be just horrid. Instead, she was laying on the bed the most peaceful I had seen her in weeks. Her breathing was stable. I was so used to seeing her little chest retract with each breath she took. The little skin she had stretched over her rib cage was barely able to hide the extreme effort it took for her to just breath. Now all of a sudden with the trach in place, it was just so normal.

After a few hours, we were transferred back up to the floor that had become our second home. I was relieved when I saw our favorite nurses name on the board next to Sarah's. All of the pediatric nurses were wonderful, but there are a few that you have a special bond with. This particular nurse seemed to understand my need for knowledge. I liked to know all of the details. What medicines were ordered and the dosage amounts, when I could expect respiratory to come in and how soon we would receive training in trach care. I had a goal. I wanted to be home for Mother's Day and I knew this nurse would support me in that quest...


Lacey said...

Oh that sounds all too familiar. Jax was reintubated 7 times during one hospital stay! I was so torn about doing the trach, and actually some days I wish it was gone! His narrow airway from so many inubations is still collapsing around the trach, causing him to cough constantly!

Anonymous said...

So scary at first but then the new normal. You capture it perfectly.