The Trach.....

John and I met with one of Wesley's doctors today along with his care group including his primary nurse, respiratory therapist, occupational therapist, and NICU social worker. Wesley has come a long way, but his progression is still at a very slow pace. We still have a while before he will be able to come home. The meeting today was to discuss the option of a tracheostomy. This would allow him to have his face free of the c-pap, and would move all respiratory support through the base of his neck. It's another surgery, which absolutely scares me to death. Everyone involved in his care that I have talked to recently are all in favor of the trach. A month ago, we had a split decision, some were for the trach while others were against. He has been given a month on just the c-pap, even tried for a few days on the nasal cannula, but he is not progressing. He has been weaned off all steroids, and we do not want to re-introduce those. This is now a decision that John and I have to make, unfortunately, it has been the most difficult decision thus far.

The purpose of the trach would be both for development as well as precaution. Developmentally it would free up his face allowing him to focus his vision rather than having the c-pap as a major blockage. It would also allow the beginning stimulation of his mouth and the ability to teach him to feed. Right now, all feedings are going through his G-tube in his belly and the only oral stimulation he is receiving is from his pacifier. It would also allow the occupational therapist to begin more heavily working on his neck control. She said that he throws his head around a lot when she sits or picks him up because he is trying to look around the c-pap or completely shake it off. She believes that he will excel with the c-pap off and the trach in place. Having the trach would also allow him more freedom to move around as a normal baby would as he continues to progress in age. As for precautionary measures, there are 2 major concerns. The first concern is how hard he has to struggle to breathe. Some days he is fine, other days he wears himself out. The concern is with his heart. Right now he has a healthy heart, but that could change if too much strain is placed on the heart to keep the lungs functioning. By putting Wesley on the trach, we would be able to switch back and forth between a ventilator and a c-pap through the trach rather than intubating and extubating. It would be as simple as switching the tubing attached to his trach. We do not want to add another health issue for Wesley by straining his heart. The other concern is if Wesley is to become sick after he comes home. With him being born so premature and the many lung problems he has had, he will be highly susceptible to respiratory illness. If he were to get sick at any time, he could very well require the support of a ventilator. With this in mind, it would be much more difficult and much more critical to try to intubate Wesley if he were to catch pneumonia again. It would be difficult to intubate because of the swelling, but if he were to have the trach, there would already be immediate access available to his lungs through the trach. He would easily be able to be placed back on a ventilator temporarily.

The two major downsides to this are: 1) he will have to go back for another surgery and 2) this will delay speech. Obviously we don't want to send Wesley back in for another surgery. He has already had so many surgical procedures and is not even 6 months old yet. He had a PICC line put in just a few days after birth, that line got infected so it had to be removed. Then he had a broviac line at about 2 weeks old because they attempted another PICC and that would not work. A few days later he had the PDA ligation in his heart. Then he had to have the broviac line removed as it got infected. He did go a few months without any surgeries, but then recently had the major stomach surgery, inserted the G-tube for feeding, another broviac line for IV fluids, and fixed his hernias. Now we are talking yet another surgery. I know the surgeons are very good, but it's not a comforting thought. If he needs it though, I have no right to deny him the surgery for my selfish reasons. My major concern developmentally is his speech. This may just be a selfish reason as well, but I'm concerned about a delay in speech development. The trach will be place below the voice box, so it will not damage his vocal cords, but will block them until the trach is permanently removed. As he gets older, if he still has the trach, we will have an option to plug the trach which will allow some air to pass by his voice box allowing some noise/speech. It would be a while before that would happen though. Depending on how long he has to have the trach, we will most likely be learning some baby sign language to communicate. He will not be able to mimic sounds, but once the trach is removed, he will be able to begin that process. Luckily there is nothing wrong with his hearing, so he will still be able to recognize words, just not be able to say them yet.

All of that being said, John and I know what we need to do for Wesley. We have not officially signed off on the surgery as we want to make sure we have covered all options. We want to talk to the pulmonologist directly as well as visit the children's home that he would be moved to once he stabilizes a few weeks (or possibly longer) after surgery. There is still the option to not proceed with surgery, and there may still be an unexplored or undiscussed option. We just want to make sure we are doing what is best for that little guy.