Finally, we are only one month away from the first stage of June’s laryngotracheal reconstruction (LTR) surgery. The reason June needs a trach is because her trachea became damaged and infected after she needed to be intubated in the ICU shortly after birth (more of our story here, here and here). The damaged area became too narrow to breathe through (called “stenosis”), and in the past year the area continued to grow scar tissue until it was 100% blocked.
In this first stage of the LTR, doctors will replace the damaged part of the trachea with cartilage from June’s rib. If the surgery is successful and the graft heals properly, the second stage of the LTR will involve removing the trach completely. I am still learning more about this process myself, and like all medical experiences, the knowledge I gain beforehand will be dwarfed by what I learn during and after the procedure. Today I will address a few common questions that we receive about our upcoming surgery. These answers are based on information from our doctor and feedback from other trach parents whose children are similar to June in some ways. Remember that every case involving a trach is unique and complex, so the answers to these questions vary widely between patients.
Will June still have the trach after the surgery?
Next month is the first of two parts (or “stages”) of the laryngotracheal reconstruction (LTR) surgery. She will keep the trach after the first surgery so she will have a reliable airway in case the graft that they place fails or doesn’t heal properly. Once the doctors are reasonably certain that the graft has healed fully and properly, they will proceed with the second stage of the LTR, which is to remove the tracheostomy tube.
How long until you can have the second stage of the LTR?
This varies widely between patients, from months to years or never. It depends on how the graft heals and on the patient’s overall health, so the doctors cannot even guess at a time frame until the first stage of surgery occurs. June has a few conditions which could lead to complications and/or delays between the two surgeries:
- June has a “reactive airway” which means her trachea is easily irritated. The source of irritation could include the surgery itself, diagnostic scopes, infections, irritants in the air, aspiration of food (food “going down the wrong pipe”) or reflux from the stomach. Irritation could slow healing or lead to the graft failing.
- June grows scar tissue unusually quickly, as seen in the rapid narrowing of her trachea after infection. This could lead to the repaired area narrowing again after surgery, and doctors may want to wait longer before declaring the graft a success to be sure that this is not occurring.
- June has a history of reflux which can irritate the airway. Obvious incidents of reflux are well controlled by two reflux meds, but it’s difficult to know when “silent reflux” may still be occurring internally where the esophagus and trachea branch off in the throat. It’s possible that June’s scar tissue has grown so fast due to ongoing silent reflux.
- June is small for her age. She’s caught up a lot on the growth charts recently, which was exciting! The doctors are very pleased with her growth in regard to being ready for surgery. Still, being small means that the trachea is small, too, which can present some challenges for doing surgery and for visually assessing healing.
- June’s tachycardia is well controlled on meds, and she may grow out of it completely soon. However, doctors will factor in the stress on her heart when planning the length of surgery as well as the time between procedures. This is one reason the doctors opted for two shorter surgeries rather than the long one-stage LTR surgery and recovery. The doctors may be inclined to wait on the second stage of the LTR until it is clear that June is in utmost health, particularly cardiovascularly.
How long will June need to be in the hospital for the first stage?
Surprisingly, our doctors estimate June will only need to stay in the hospital 2 or 3 days after the first stage of the LTR. (Patients undergoing a single-stage LTR stay in the hospital much longer.) June will go home with a stent (a little cylinder) inside the trachea at the surgery site which keeps the graft in place and prevents narrowing while the area starts to heal. Basically, while in place, the stent ensures that her newly widened airway remains functional, and even if the airway fails for some reason, June will still be breathing through the trach anyway. The doctor will decide how long the stent will stay in. When the stent is eventually removed, the doctors will observe whether the graft is stable on its own and whether the area starts to narrow.
Why didn’t June get this surgery earlier, or perhaps instead of the trach altogether?
Our doctors explained that the first attempt at an LTR has the best chance of success, so they wanted the conditions to be optimal before proceeding. As mentioned, June is small for her age, and until now, the size of her airway presented a logistical challenge for surgery. Doctors also wanted other factors under strict control such as June’s tachycardia, reflux, and growth percentiles. Lastly, doctors don’t do this surgery during RSV season because the effects of a serious respiratory virus in a trach patient recovering from surgery would be severe. So, when all of June’s previously mentioned factors did not come together last summer, we had to wait another year to be eligible for the surgery.
How will this surgery change your daily routine with June? Will you have less medical care and precautions to manage?
Our daily routine will not change at all after the first stage of the surgery since June will still have the trach. So we will still do daily trach care and daily/weekly maintenance of her medical equipment. We’ll still need to carry the emergency trach supplies, resuscitation equipment, and oxygen because anyone with a trach is vulnerable to trach plugs and respiratory emergencies. However, June will be much, much safer after the surgery due to the fact that her natural airway (the trachea) will be open again. This means that if her trach does completely plug, she may be able to breathe around the trach a little if there is any “leak” (extra space) between the trach tube and the trachea wall. A little extra oxygen makes a huge difference in a respiratory emergency.
So what changes will this surgery bring? What are you most excited about?
Despite the fact that our daily routine with June will not change, we are thrilled about three huge areas that this surgery will affect:
- First and foremost, we are glad that June will be a little safer when she has a trach plug. We’ve dealt with over a dozen trach plugs, but two incidents were severe enough that June lost consciousness. We are beyond grateful for any small amount of extra oxygen she may receive from around the trach during these emergencies.
- Secondly, after this surgery we will learn whether June can vocalize or not. As discussed when we were cussing in sign language, the scar tissue blockage prevents air from traveling to June’s vocal cords right now so she can’t make any sounds. However, the scar tissue may have damaged the vocal cords themselves as well. Once the scar tissue is removed, we will be able to assess the state and function of her vocal cords. If she can vocalize, we have an exciting new speech therapy road ahead of us. If she can’t, we have an exciting new completely-American-Sign-Language road ahead, at least for now. (I imagine if she can’t vocalize, the doctors will assess whether there any surgical or adaptive interventions available to June.)
- Third, the outcome of this surgery will determine whether June can join “the naked neck club,” which is the term we trach parents affectionately use for when the trach patient is able to lose the trach, or officially “be decannulated.” If the graft heals properly, then we are all set for stage 2!!! If the graft fails for some reason or the stenosis returns, it does not necessarily mean that June will need the trach forever. It means the doctors will need to reassess and see what the options are for June’s specific situation. It’s difficult to pin down a “success rate” for this surgery since every case is so complex and different, but many trach patients have multiple “failed” LTR surgeries but are ultimately successful in decannulating.
We have eagerly awaited this surgery for well over a year. June 11th cannot come soon enough!
See also: LTR info from “the pros….” We don’t use Cincinnati Children’s because we are pleased with our local care, but trach patients and families travel from all over the world to see their specialists.