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First off, May 5th was Zoe’s original due date. Well, she missed that date slightly – by exactly 100 days. Coincidently, May 5th ended up being the day that Zoe received her tracheotomy. So what could happen this year on May 5th? Hmmm…let’s see…wait…no way…really?? Seriously?? Well, no, fate isn’t quite that precise this year. It’s decided to wait one extra day. We will be traveling to Cincinnati once again on May 4th…we will arrive in Cincinnati on May 5th…on May 6th, Zoe will have reconstruction surgery on her airway. Click on the More link below to read all the details.

Many people have asked us what the actual surgical procedure will be. Dr. Cotton and his staff have informed us that the type of surgery will be determined once they have Zoe open on the operating table.

There are two different options for the type of surgery. The first type, and most likely, is called Laryngotracheoplasty (LTR). This surgery is very similar to the cricoid split Zoe had last April. Dr. Cotton will cut the cricoid ring of her trachea as well as the other areas of narrowing. Instead of leaving it to heal on its own around an endotracheal tube stent as with the cricoid split, he will take cartilage from Zoe’s ribs and use it to make one or two grafts to widen the airway and hold it open. Zoe will probably need two, which are called anterior and posterior grafts. If this surgery is the one that is performed, the next steps will vary significantly. Again, we will not know which way it will go until the surgery is actually performed.

If Dr. Cotton decides to do the LTR procedure in what is called Single Stage, he will perform the above procedure and take out Zoe’s trach. The grafts will be held open with an endotracheal tube (yes that means she will be on a ventilator once again) for 7-10 days. This time around, Zoe will not be paralyzed like with the cricoid split, but she will be heavily sedated, which essentially looks the same from the outside but will not inhibit her body processes as much (i.e. breathing, digestion, etc.). After the 7-10 days are complete, the doctors will decrease the sedation, take Zoe back to the operating room and extubate her. Again, this is very similar to the cricoid split. The only difference is that this time the grafts will be in place to hold open the narrow area. In order for the grafts to be successful, they must “take”, which is essentially like any other graft (i.e. not rejected by the body, incorporates itself as new tissue with blood supply, etc.). Average hospital stay for the single stage is 4-6 weeks with probably another 2-4 weeks at the Ronald McDonald house for outpatient visits.

If Dr. Cotton decides to do the LTR procedure in what is called a Double Stage, he will leave the trach in and hold the grafts open with a more permanent type of stent implanted in her airway. Zoe should not have to go back on the ventilator with this and will continue to breathe out of her trach. The average hospital stay for the double stage is 7-10 days. Zoe would be discharged from the hospital with the stent and the same size trach (4.0 Shiley) in place. Anywhere from 6 weeks to 6 months later, we would return to Cincinnati for Dr. Cotton to remove the stent, while again keeping the trach in. The trach will be slowly changed to smaller and smaller tubes until it is capped off. This could take 6 weeks to as long as a few years, with many trips back to Cincinnati.

So what are the deciding factors for the Dr. Cotton to choose either Single Stage or Double Stage? A big one is pulmonary (lung) function. In other words, is Zoe likely to have to go back on the vent if she gets sick or is stressed in any way. If this is even remotely close to a yes, Double Stage is the choice After the surgery, you want the time Zoe has to be intubated with an endotracheal tube virtually absent (except for post-op) because the tube could cause the airway to narrow again (Remember – being intubated in the NICU for three months is likely what led to Zoe’s airway to narrow in the first place). The other factors are really unknown to us and revolve around what the overall picture is of Zoe’s airway once Dr. Cotton has her open. He invented this surgery and does it the most in the world, so he relies on his instincts to make these “game-day” decisions.

As I mentioned above, there are two types of surgeries possible. The second, and unlikely, option would be a partial cricotracheal resection (CTR). This procedure involves cutting out the narrow part of the trachea and resectioning or jointing together the remaining parts of the trachea. This is a good procedure because it does not involve grafts, which means you do not have to worry about them “failing.” Unfortunately, it is difficult to be a candidate for this procedure because you must have at least 4 mm of healthy airway below the vocal cords, so you can resect the tissue together. Most people’s stenosis is closer to the vocal cords than that. This procedure can also have two stages: Single Stage and Double Stage. Single Stage meaning that the trach comes out with an endotracheal tube keeping the airway open while it heals. Double Stage meaning that the trach stays in and a stent holds the airway in place while it heals. The recovery times are the same as that for the two stages of the LTR procedure. The other different aspect of the CTR procedure is that for the initial 7-10 days, Zoe would have two stitches that connect her chin to her chest, putting her head facing in a downward position. This is so the airway will heal properly. This occurs in both single stage and double stage of the CTR procedure. Zoe would be sedated, so she would not move or be uncomfortable.

Finally, what are the risks of the surgery? Really for the most part, even though it is definitely major surgery (6 hours or so), the risks are like any other surgery (anesthesia problems, bleeding, etc.). Taking that out of the picture, you worry about airway issues and graft failure. This surgery isn’t a slam dunk. While Dr. Cotton is the best in the world, every child is different and their bodies react in different ways. However, if the graft should fail, the procedure can be performed again, and can be successful on the second or third try. If the graft were to fail, Zoe would either (1) have to have an emergency trach put in (if Single Stage was performed), or she would already have the trach available (if Double Stage were performed).

Another issue that we have been made aware of is the risk of graft failure because Zoe has MRSA. This is antibiotic resistant bacteria that for some reason seeks out the graft and destroys it. The reason we cannot treat it now is that as long as Zoe has her trach, it is impossible to completely get rid of any bacteria that is growing there. Antibiotics can keep them from making her sick, but the bacteria are still there. Starting a few days before the surgery, Zoe will begin taking oral antibiotics. After they start her IV in the operating room, the doctors will put her on IV vancomyocin, which is an antibiotic that should wipe out any MRSA left. When Zoe is discharged, she will stay on oral antibiotics for a few weeks for Single Stage or probably until the trach is out if they do Double Stage.

The final risk or side-effect of this procedure is quality of voice. Because the surgeons are working so close to the vocal cords, sometimes even on top of them, the risk of altering or limiting voice quality is significant. This could range from no change in voice, all the way to almost no voice at all. This is something that we will not know for many months after the trach comes out and Zoe begins speech therapy.

Most people know that the most difficult times for us during this saga have been the first few weeks when Zoe was born and the day she was trached. This surgery will definitely equal those times of worry and uncertainty. We have had her home with us for 9 months now, and the thought of putting her through another surgery, especially one so major, is truly petrifying. To know that we will have to see our very mobile toddler motionless for over a week is hard to imagine. We know this is what we have been moving towards for the past year since Zoe was trached, but the potential excitement over the results we hope to realize is tempered by our understanding of what all has to happen and the length of time we may have to take to get there. As you all have so many times, please keep us in your prayers. We should know the answers to most of the unknowns right after her surgery on May 6th. After some decompressing, we hope to post the findings and outcome.