I was up bright and early at 530 this morning. I took Ava to my sister's house so she could drop her off at school. Then, the boys and me were off to fight rush hour morning traffic to to All Children's Hospital in St. Petersburg...a 45 minute drive took us nearly 1 1/2 hours this morning :-/. I was 30 minutes late, but they were very good and worked me in. Well they tried thin liquids and thick liquids, they tried y-cut nipples and fast flow nipples with the thickener, they tried sippy cup and syringe feedings....he aspirated everything. He had good swallows, but what was happening was he let the fluid build up in his throat before he swallowed and did not completely swallow everything. So, there was residual fluid left in his mouth and when he went to take a breath he was aspirating small amounts into his lungs. He did well swallowing1/2cc of baby food at a time with a syringe. So the verdict is NO MORE BOTTLE FEEDINGS for now :-(. It took a lot not to cry when I seen him aspirating everything 1. because I thought he was over aspiration and continued to force him to eat 2. because I feel like I failed. This does not mean it is the end of him eating liquids....maybe once he is well again and becomes more coordinated things will change...she also mentioned an electrical impulse therapy called E-Stem which is used to strengthen the muscles that are used to swallow. She said this may benefit him and reduce the residual left in his mouth. We can't try that until he is 18 months old adjusted age so 5 months from now. The plan for now is to g-tube feed him and give him puree foods by syringe 4 times a day when he eats followed by a pacifier to help him swallow and so he does not loose his ability to suck and swallow. I did manage not to cry there...and I had excepted by the time I got in the car...so all is well. He needs a break. Maybe he will stay well. The speech therapist also said that maybe he was refusing to eat because he knew it was not going down right anymore. Though, when he was aspirating he was not coughing so they are concerned he does not feel it.
On a brighter note he must have knew I was desperate for something. He has been so alert tonight. He has started doing some of the things he has not done in weeks. While on his stomach tonight he started pulling himself up again with his chest off the ground. Then he proceeded to try to roll. It seemed like he did it on purpose and not just a spastic movement. He has rolled not once but 3 times in the last hour :-) He was on his back in his crib earlier and when I went back in to get him he has rolled himself to his side. I see him trying so hard to move. He is doing okay with his arms, but his legs just don't want to work with him. I'm still very happy...shows me he has not given up. :-)
The monster in his cage
Jacob pulling up tonight. He rolled 3 times from stomach to back :-)
Ava made me take a picture of her rolling because I was making a big deal about Jacob rolling LOL
What a cute blob...your a amazing mommy girl!
ReplyDelete