Joshua's Journeys #12- Vent free and more

On Sept. 15, 2008 Josh became vent free! After his trach surgery he still had the ventilator hooked up to his trach to help him acclimate to his new airway. Josh did well and was weaned quickly. We sang "I've Got No Strings to Hold Me Down" a la Pinocchio. It was so nice to be able to pick him up whenever we wanted without worrying about the vent or other wires in our way. Josh was even ready to start working with a pacifier now to learn how to suck! Josh did have a humidifier (the blue thing in pictures) that would help moisten his airway while he was resting, but for the most part he just used the humi-vents/noses so he was very mobile. He seemed to like holding onto it, and we put a little puppy wrist rattle on there for him too. Eventually at home we learned that Josh did much better without the trach collar (humidifier) on him, as long as we had 3 or 4 humidifiers going at night in his room. It felt like a jungle in there!



That night however, became a very scary one for us. Josh had coded in the middle of the night- around 4am. He needed CPR and was resuscitated successfully. The reason for his event we still don't know. It was thought that he possibly had a reaction to one of the anesthesia medications, but an anesthesiologist that we got to know a little better had later told us he did not think that was the case at all. Another thought was that he had a seizure, something we were wondering if he would develop as time went on. He had been seen by a neurologist (not to be confused with neurosurgeon whom he will see soon as well) and all we were told was that it was possible that he could have a seizure and we would never know his likelihood until he had one. After this scary event in the wee hours of the morning, Josh had a brain study done for 24 hours to try and detect any sort of seizure activity since in babies it is really hard to tell if they are having a seizure. Sometimes babies will convulse, but most often it will be one limb- a hand for instance that will tremble and can easily go unnoticed. In addition, babies can have staring seizures where they focus on one point for a long time. So in order to determine if Josh had a seizure we did the brain study. The poor little guy had a mummy wrap on his head...which he would soon get used to having stuff like that once his shunt surgery (next month!). The results of the study: no seizure activity! So the scary night became a mystery as to why it happened, but it also helped strengthen a lot of communication between people in the NICU, their understanding of how involved we are and wanted to continue to be, and how much we all were fighting for Joshua.


The following day, Sept. 17, we learned from one of the NICU docs that Joshua's testicle had dropped! One less surgery for us to worry about! It is another common thing for CHARGE babies to have undescended testicles (one part of the "G" in CHARGE)that later require a procedure to drop them, but thankfully one less thing to check off our list!

The next big thing schedule for Josh would be Sept. 21 when he had his g-tube placed (yes, surgery!). Right now Josh has been getting his breastmilk through a naso-gastric tube, it is a little tube that goes into the nose and feeds down into his stomach. It is the short term solution, which is why many others that are in the hospital may have had a n-g tube, but it is easy to pull out (thus the tape on some pictures) and much more comfortable and convenient to have a g-tube for those that will need it longer term. As I mentioned before, Joey also had an n-g tube the first few days of life while he was trying to figure out how to suck and swallow. Josh will take a bit longer to learn this skill, so the g-tube surgery was scheduled (again!)for Sept. 21. Since Josh didn't have the ventilator anymore, or anything obstructing his mouth, he was ready to start working with a pacifier to learn how to suck. At a later time I will post about speech therapy (probably many posts!). I don't know if part of it is the dietitian in me, but I LOVED working with Josh on his eating, sucking, all the speech therapy goals we had.