Tuesday, August 2, 2011

The Daily Life of Mr. Max...

There have been a lot of people wondering about Max's daily routine, his equipment, and an update. Therefore, I hope this following will help bring you insight to Mr. Max's daily life...
The monitor on the left in the blue bag is an apnea monitor which he only wears at night when he sleeps for an extended period of time. It monitors his heart rate to make sure it isn't too high or low and also monitors if he stops breathing for an extended period of time. The monitor will alarm us so we can check on him. The smaller monitor in the middle also watches his heart rate, but it focuses on his saturation levels...this monitor stays on him 24/7. For a BPD baby (regarding his lung disease) his saturation level should be above 88. Max is doing really well because he stays in the 90's for most of the time...he will occasionally drop lower if he is upset or kicking too much. The last piece of the puzzle is his oxygen concentrator...
The concentrator stays plugged in 24/7 in his room. We switch him over to a travel tank when we take him to appointments...which he isn't crazy about! More insight into his personality include that he is a wiggle bug and kicks constantly. He loves to sleep on his back, tummy, and sides. A big new development is that he is turning over from his tummy to his back!!! Max can also roll to his sides, just not completely from his back to tummy yet. He loves to lay on his back or sit in your lap and stare...
*Side note...his mobile drives me crazy because it doesn't coordinate with his mountain/backpacking room, but he got addicted to this fisher price mobile/entertainer in the NICU so I sacrificed good looks for practicality...you can't blame me can you? :) He still is extremely fond of his swing and we are warming him up to his play gym. His tummy hurts him often, so...
he wears this little tummy buddy that you heat in the microwave so it soothes him. Unfortunately he isn't fond of a pacifier so I am working on trying to find a way for him to self sooth himself...we are getting there, slowly but surely. Max is on 6 different medicines throughout the day and is eating every 4 hours, except through the night. Feeding is our one major struggle due to his oral aversion from being on the vent for so long in addition to his acid reflux. Max is finally not fighting me (I mean screaming, spitting the nipple out, jerking his head, arching his back...you get the picture)! He is relaxing more to feeding times and he didn't even have a fountain of vomit all day yesterday...yeah Max...making progress! Another new development is that we are finally feeding under an hour...today we had one feeding in 30 minutes...wa-hoo! Max is home bound through the winter except for Dr. appointments which he isn't too keen on...
I don't think he quite knows what to think about being in new places. He met his pediatrician last week so she could meet him and hear about his journey. She thought he looked good and has referred us to a pediatric pulmonary specialist who will focus on his lung disease.
Today, Max had another hearing check and unfortunately failed it on his right ear yet again. Therefore, we are seeing an audiologist on Friday to discuss further what this means for Mr. Max. Daniel and I aren't too worried because he can at least hear on his left and it just means that Max will have another fashion accessory to go along with his monitors! So stylish! :)

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