Friday, December 5, 2008
Monday night Mikan inhaled a small amount of condensation from his vent tubes. We suctioned him out immediately, but he probably had a small airway spasm or lung collapse because he didn't return back to his normal respiratory status. He went from not needing any 02 during the day to needing 2 1/2 liters that night (about 45%). He was retracting and breathing 50-60 times per minute that evening. The next morning he hadn't calmed down, so we had to give him a few breathing treatments with albuterol to open up his airway. Luckily this seemed to make a difference and we didn't have to take him into the hospital. We talked to the pediatrician every few hours to give her updates and she made recommendations and sent prescriptions for us so we wouldn't have to take him anywhere. However, the albuterol made him spastic and his heartrate was in the 190s, both common side effects of the treatment. Hopefully he won't need many more of them in the future. His 02 requirement over the next few days was up and so were his respirations, but he appeared to still be comfortable most of the day.
Now Mikan has returned back to his baseline and doing wonderfully. Yesterday we had an appointment with the pediatrician. Mikan is almost on the growth curve for weight and length and he is in the 5% for head circumference (for his normal 9 month age, not his adjusted age...for his adjusted age, he is doing wonderfully). He is now 15lbs, 14oz. She said if Mikan continues to do well over the weekend, we can turn his pressures down again to 12 on Monday. Then she will get a set of blood gases, and if all looks good, he will be on CPAP next and off the ventilator, this time hopefully for good. He will have all of his same equipment, he just won't have a breathing rate.
Mikan had an appointment today with the speech therapist who trained us on the Passy Muir valve. She said Mikan did the best with the Passy Muir she has ever seen for a first time trial. The valve allows Mikan to exhale through his mouth so he can pass air through his vocal chords and make noises. The videos show him finally making baby sounds! The Passy Muir valve is the aqua-colored plastic piece on his vent tubing. I'm having trouble loading some of the video, so I may try in a later post. His OT has been giving us exercises to do on his ball. He loves bouncing on it.
Because Mikan's feeding issues aren't improving, the speech therapist recommends that we wait until Mikan is sucking on a hand or a toy, or one of our fingers, and then we pour some of the baby food onto whatever he is sucking on. We tried this throughout the day today. It creates a big mess. I almost think it would be easier if we stripped him naked, laid down some plastic and poured sweet potatoes all over it so he could roll around and eat it off all of his body parts. Is this teaching bad habits? :)
Next week we are seeing a nutritionist and the OT. We will also be seeing a pediatric pulmonologist next month who will be giving us tips on weaning off of all the equipment.
Posted by John and Jenna Gensic at 6:20 PM