I guess I should pick-up from my last post. Jacob went to his swallow evaluation this passed Monday. He is aspirating when he eats. I was told he is sucking to fast and that the fluid is building up in this throat before he actually swallows it. So when it builds up and he goes to breath he aspirates. His aspiration was worse when his head was turned toward the right and when his neck was flexed back. So, when I feed him we have to sit him up at almost a 90 degree angle make him flex his neck down into a chin tuck and keep his head strait or to the left. Worse part is when he aspirated during the test he did not cough or anything. They refer to this as silent aspiration. This scares me because before I knew when he was chocking and know there was a chance he was aspirating now he could be eating totally normal and turns out he still might be aspirating. He had a good week. I was told to even attempt to feed him thinner liquids and that I was making them to thick. He even had a few bottles that were not thicken and did not gag at all. By Wednesday he started acting funny. He usually loves baby food and he refused to take his feeder bottle with baby food and only wanted his bottle. By Friday he was eating half his normal amount and still would not touch baby food. I figured he is cutting 2 teeth at one time and his mouth must just be sore. He was acting fine and was actually in a really good mood on Friday. He was happy and smiling. He had a good time with the physical therapist and she was impressed by how well he was behaving and actually interacting with her. I was told by the speech therapist to watch for signs of pneumonia. I go to work on Saturday and my husband calls me around 11am and tells me he has not been able to get Jacob to eat all day. When I came home my mom was trying to feed him. I was told he had ate 6-8oz all day. Then my mom tells me that he is running a fever! She tells me that he has been warm all day and it was 102 when she changed his diaper. Of course no one treated the fever! I got him to eat 8oz for me. He just looked dehydrated. I watched him for a few hours medicated him a 2nd time for his fever. By 4am I just could not get his fever down.I made my 3rd trip to the ER in 6 weeks,once again on a Saturday, for fever and breathing issues. He got the typical chest x-ray, IV, and blood work. IV showed bilateral interstitial infiltrate in his lungs. His rectal temperature was 104.5 when I got there. He got IV fluid and Rocephin IV. They diagnosed him with pneumonia again. It was the same doctor that seem him the last 2 times. She said the right upper lobe was looking a little better. He is going to be on antibiotics for the next 10 days and I have to follow up with his doctor on Tuesday. It is either the end of this week or next that he is seeing the GI doctor. I'm sure he is going to end up with a g-tube. We can't keep compromising his lungs for him to be "normal".
The new Jacob schedule will be as follows starting next week. Tuesday: Speech/feeding therapy in the A.M Wednesday: physical therapy in the A.M Thursday: speech/feeding therapy in A.M. Early interventionist in P.M. Friday: Physical therapy in A.M. We get to do this schedule for who know how long on top of doctors appointment for everyone in our family etc. :-) Life is good though and I'm glad we have the ability to provide all our children with everything we need. God always provides and I am grateful!
Andrew had his MRI on Friday. Jack took him. He did great. I don't have the results yet.
My parents left today :-( Praying they have a safe trip back to Alabama. :-)
one day I will re-read my blogs. They make total since to me when I type them but Jack tells me all the time where they don't make since or I start writing about something and go off subject. Thanks for taking the time to figure out what I am trying to say LOL