In the past few days we've received lots of questions regarding the recent decisions to go ahead with the trach/g-tube surgery. While we are still learning about each of these, we thought we'd pass on some knowledge:
What is a tracheostomy?
A tracheostomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening. Faith will no longer breathe through her nose and mouth but through a tube inserted in her throat.
Why does Faith need a tracheostomy?
Because Faith was extremely premature she needed life support equipment to survive. At 25 weeks her lungs were severely underdeveloped so she was put on a ventilator for support. Like almost everything in medicine, the vent was a catch 22- while it kept Faith alive, it also damaged her airway. As you all know, Faith spent a VERY long time on and off the vent (about 3 months!) which caused scaring on her vocal chords. This scaring has made it very difficult for her to breathe on her own. Faith is currently on a high flow oxygen cannula that stints her airway. While she is able to breathe with it, she has frequently episodes where her oxygen saturation levels plummet, and she needs intervention such as suctioning or even resuscitation. At 47 weeks gestation, and about 5 months of age- this cannot go on any longer. If Faith were to have one of these episodes at home, we would not be able to handle it properly. After multiple Bronchs Faith's ENT (Ear, Nose, and Throat) from The Children's Hospital found that if she did not improve, she would need a trach to provide an airway.
How long will Faith have her Trach?
This is the million dollar question. Hopefully not for long. The average length of time for a child with a trach is two years. Once Faith's airway is healed, and she can breathe on her own, she will have the trach removed.
How do you care for a child with a trach?
Very carefully! Caring for a child with a trach is not somehting to take lightly. Trach care involves a complex process that involves frequent suctions of the tube, tube changes, cleaning, etc. The list of equipment needed at all time in intense- for example we are required to carry a resuscitation bag with us at all times! Problems that could arise with a trach include mucus plugging, too many secretion, accidental decannulation (the trach coming out) increased risk for infection, etc.
Can Faith talk/eat with a Trach?
It depends. We have heard stories of children being able to plug their trach tubes and talk, but it really depends on the size of the trach tube and the reason for the trach. Most families with trachs communicate using sign language- which of course could be difficult for us because of Faith's limited vision (but if Hellen Keller could do it, so can Faith!) Hopefully the trach will be out before Faith is at the age of vocalization. Yes, Faith can eat with the trach, in fact we think she will have a much easier time eating since she will be able to breathe- which leads us to our next topic: G-tube!
What is a Gastrostomy tube?
A gastrostomy feeding tube is either a tube or a button (skin level device) that is surgically placed into the stomach through the abdominal wall. Whatever Faith cannot eat by mouth she will be fed through her tube. This will ensure proper nutritional intake and growth for Faith. We are actually excited about this one because this means no more battles to get Faith to eat! Like the Trach caring for a g-tube is not easy. There are risks such as it coming out, causing infection, etc.
How long will Faith need her g-tube?
Until she can consistently eat and grow on her own.
What about Faith's reflux?
We are also happy to out an end to this! Faith will also undergo a fundoplication to stop her reflux. Here's what we found out about his at Webmd: During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal.
Phew! Ok we know that was a lot to digest! We appreciate all of your care and concern during this stressful time. These surgeries will not only be life changing for Faith (hopefully in a good way) but for our family as well. They will require a big commitment, but we can handle it! If Faith can survive everything she's gone through we can certainly do this! It will certainly take a village, but we can and we WILL do it!
Thanks for everything!
Brian and Jen