Sorry it has taken me so long to post...things have just been so hectic!...
This week has been anything but smooth sailing…The transition from Dayton to Cincinnati was rough to say the least. The most difficult part was leaving the nurses and other staff at Dayton that we have grown to love so much. Before we left I made Ayden’s primaries do a photo opp with him!...We <3 them & miss them already!
Although things are so different in Cinci, we have begun to settle in. He even already has 3 nurses who asked to sign up to be his primaries…My ‘lil’ man must just melt the ladies hearts :-D … As for the trip to Cinci, Ayden didn’t mind the ride but was rambunctious when they attempted to get him settled in and calm when he got into the NICU. Part of his attitude came from the lack of medicine he was given. Ayden had been on Fentanyl and Versed drips since his surgery on the 15th but during the transfer Cincinnati refused to use his meds from Dayton and his drips remained off for about an hour and a half. Needless to say, Ayden became a wild man and threw a fit! When they finally got him caught up on his pain and agitation he was still so mad about the tube that he had to be restrained. The second day of being at Cinci the doctors tried to change everything. They attempted to persuade us to allow them to completely stop his drips and begin oral alternatives for the same types of meds. Ayden has built a tolerance to a number of meds and introducing him to new meds just to wean differently is not something I am going to let happen. And so, we avoided another unnecessary change. Ayden has now been weaned off of all of these meds even without the weaning method they had tried to persuade us to follow.
So, when it concerns airway, on Thursday he finally got his ENT/Pulmonology Consult and got a more precise/ hi def scope done. They found that the lesions in his airway are in fact papoloma and they were able to shave of all of the lesions on the left side of his airway. They plan to go in and shave off the lesions on the right side on Wednesday afternoon. We also had the best news ever after this last procedure!...Ayden is not going to need a trach!...His tracheomalasia is mild and the doctor said that it doesnt seem to affect him!... :-D ...So...On Friday they were able to extubate…he started out on 6 liters and is now on 1/4 liter high flow at 21%. They plan to take him off oxygen completely tomorrow to see if he tolerates it. Hopefully he doesn’t need to remain intubated after his next procedure.
Meanwhile, Ayden has been having problems gaining weight again. He has actually lost quite a bit of weight. To see if they could help him grow, the doctors have rearranged his enzymes to the point where he gets it with each feed and they have now placed him on continuous feeds but are allowing him to bottle feed 4 times each day. This all happened so quickly though. This morning they were just giving him tastes of milk on his binkie and a couple drops of milk squirted in alongside it two times a day. But by 2pm they let me try to give him one hour’s worth of milk. And so, now 4 times a day they allow us to stop his feeding pump and give him a bottle. He has been sucking down the 22ccs in only 5 minutes or so! Hopefully this is a sign that he may not need the g-tube forever!
Ayden is also supposed to have hearing and eye exams this week to check up and confirm the previous testing done at Dayton. We are hoping that things are not progressing within his eyes and we are able to find out what exactly is going on with his hearing. Since the previous hearing test at Dayton didn’t go as smoothly as it was supposed to, we are anticipating different results since they are going to give him meds to calm him down. From the way he responds and interacts we do not think his hearing loss is as bad as they had told us and are hoping for confirmation of this soon!
Weekly length/weight update: 8lb 5.5oz & 20.25” long
Ayden & his Daddy!
Ayden & his Daddy!
Hopefully this next week finally brings some good news!...Wish us luck once again & please keep Ayden in your prayers!