This week we finally got the good news we've been waiting for!
Silas's pediatric pulmonary doctor from UCSF called to tell us that Silas passed the sleep study he had in August and now appears ready to be decannulated (get his trach out). We don't have an official date set yet but they are working to schedule us for some time in late October. We couldn't be happier!
Silas has had a trach since he was five months old, and he turns 23-months this week, so it has been a big part of his little life (and ours). He originally needed it to bypass his vocal cords, which were paralyzed because of his Chiari II malformation -- a consequence of his birth defect, spina bifida.
Last year, he underwent a procedure called Chiari decompression surgery in which his neurosurgeon removed part of the base of his skull and cervical vertebrae to make extra room for his herniated brain stem which was pinching his cranial nerves. The surgery was successful, but took about 12 months to fully take effect.
Now Silas's vocal cords are working normally again and he has started to learn to vocalize while wearing his Passey-Muir valve, a little purple cap that works as a one-way valve so he can breathe and speak. But Silas still has central apnea, which means he will sometimes hold his breath for short periods when he's sleeping. Left untreated, his apnea could lead to brain damage, so he has to get oxygen therapy through a trach mask whenever he's asleep. The oxygen stops him from having apnea, and since the oxygen is delivered through his trach, his doctors have been hesitant to take it out.
Since pediatric pulmonary doctors know how hard it is to get a toddler to start wearing a CPAP mask or nasal cannula, they take a very cautious approach to decannulating a child with central apnea. But Silas proved last month that he could tolerate getting oxygen through a nasal cannula and that he could go a whole night without having a central apnea episode, so his doctors are willing to give decannulation a try. Before we could move forward we had to get the go-ahead from four doctors: Silas's ENT surgeon, neurosurgeon, and two pulmonary doctors. We've been working on the process since the spring, and we're excited that it's finally happening.
Silas's doctors stressed that they are not 100% sure his decannulation will be a success (they never are), so they want to observe him overnight with the ENT surgeon standing by in case he needs to have the trach surgically reinserted. His last sleep study showed some signs of obstructive apnea, which is probably a result of having to breathe around his trach, but there's a chance that there may be another source of obstruction that could cause a problem, so they'll be watching him closely.
At some point in October we will go up to UCSF and they will remove his trach and monitor him for the rest of the day and overnight while he sleeps. If everything looks good, they will send us home with a trach-free little boy. We're really excited about how far he's come and close he is to getting his trach out.
As soon we get a date set, we'll let everyone know the plans for the huge party we're planning -- Silas's "Great-American Trach Out." We're eager to hear what his little voice sounds like when he says "ah-ah-ah" when pretending to be Sesame Street's "Count" (see below).
We'll post more news as soon as we get it. Thanks everyone for your prayers and support!
UPDATE -- We just got the date: this Monday, October 17!
