After much discussion among the doctors here, and lots of blood gas readings and reviewing Alex’s records, we’ve all come to the agreement that Alexander needs the pressure support of CPAP, which means not going back cannula anytime soon. Alex breathes just fine – no apnea episodes in over 2 months, and his O2 requirements are usually running in the 30-40% range right now. But his lungs just can’t process the CO2 in his blood very well without help, and he needs that help to take some of the stress off his body while his lungs grow and heal.
The major down side to CPAP is that Alex is miserable. You would be too if you had tubes shoved up your nose with pressurized air blowing in all the time. He can’t bottle feed this way, so he still has a feeding tube in his mouth, and he’s been gagging on those for weeks already. He can’t really lay on his side or on his tummy, and he can’t sit up in a chair really all that well either. We’re at a point where, if he’s on CPAP much longer, they’d need to sedate him to help keep him from pulling the tubes out. He’s huge these days – pushing 10 pounds – and really strong, and it’s a fight every time something has to be replaced or adjusted.
Our other option, and the one the doctors (and us, and the nurses and respiratory staff) favor, is to give him a tracheostomy and put him back on a ventillator. He will be more comfortable, his lungs will have more support so he expends less energy for better results, and it will take part of the load off the rest of his body that all this work trying to clear CO2 is causing. With the trach, he will be able to go back to bottle feedings after he’s stabilized, will be more mobile, and be allowed to play with the PT/OT therapists again. The ventilator will not be breathing for him – it’ll be set simply to support his breaths with a bit of pressure, and with a low pressure when he’s exhaling to help make sure his lungs stay open – basically, the function of the CPAP, but a bit smarter.
So, later this week (assuming we can get on the schedule) Alexander will be going in for surgery to put in the trach. He will also be getting a g-tube, a port directly into his belly so we don’t have to mess with a feeding tube in his throat. The trach will stay in for a while – probably a year or more, even after he’s off the vent – so that if anything comes up they can use it, rather than risking scar tissue taking it in and out. This will cause some speech delays, but speech delays are terribly common in preemies anyway because of the tubes in their mouths. We’re planning to start doing baby sign language with him once he’s settled in after surgery to help him communicate effectively, rather than being frustrated.
While it’s not a cure all, and not guaranteed, this is Alex’s best chance to become a reasonably normal kid. Only time will tell how much and how quickly he will improve. The doctors are hoping 1-2 months from now he’ll be ready to come off the vent again; if not we can talk about bringing him home while still on it.
In the meanwhile, we’re moving forward with a long term project at the house, and making plans to rip out all the carpet to replace it with wood and tile. It’ll be better for our allergies, and better for Alex’s breathing when he comes home. Yay for AFLAC hospitalization benefits – Alex will run out of those come mid-December, but in the meanwhile, we’re getting a fair chunk of change from them that will go towards the floors and debt reduction.
We’re sure you will have questions; feel free to comment here or email and we’ll put together a question and answer post in a few days. You can also feel free to call Janet’s cell phone, as she’ll be leaving updates on her voicemail greeting through the week (though phones are off when we’re in the NICU, so don’t expect an answer when you call).
