Logan had his swallow evaluation today. This is where they put him in front basically a live x-ray. They have him drink barium from a bottle and see how it goes through his digestive trach. 1st they tried thin liquid he did drink and swallow a few times then he aspirated a small amount of the fluid. :-( Then they did the same process with thickened liquid with the same results. I walked in his room as Dr. Brown was seeing him after the procedure. I missed the procedure...but that is another story grrr! Dr. Brown says he needs a G-tube. This is a tube that goes directly into his stomach to feed him instead of having the NG-tube in his nose. He is going to surgery either the end of this week or early next week. He will have all the procedures he needs done at once. This includes the G-tube 2 hernia repairs, and some procedure with the stomach to help prevent reflux I forget the name of.
As for his respiratory status he is doing very well right now. His steroids are at 0.8mg He is at 28% and is sprinting off the ventilator 4hours 2x a day. She is weening steroids every other day opposite of the versed she is weening. Basically once he stabilizes after surgery and he continues to improve respirtatory wise (She is thinking 3-4 weeks) She will consult with pulmonology again and order the home ventilator/c-pap and he will go home!!!!
It really hit me last night about Jacob. This entire time since I knew of his brain damage I continued to think positive and just believe he would be okay. Then the more I thought about it and I thought about what the neurologist told me last week it just hit me. I have been thinking oh no I am going to have a handicapped child. Not once did I think about Jacob's life, just how it was going to affect mine. He is the one that is going to struggle to achieve every mild stone and he is the one who can be totally alert and with it and have a body that does not want to move when he wants it to. I do continue to believe that God has a plan and I will continue to have faith in what HE has planned, but I'm scared. I am more scared for him than Logan. Logan is going to be fine even though he has had some rough moments I have always known that once his lungs heal he would be neurologically intact. The MRI just confirmed what I already felt. Logan may need oxygen for a long time and may not be able to run and play sports, but he is not going to have to deal with what Jacob has to potentinally endure his entire life. I seen a teenager with cerebral palsy today. He was wheel chair bound. He had the classic contracted arms and bent wrist. Finger spread wide open like Jacob does. He had the biggest happiest smile on his face though as he interacted with his family. They were talking to him and we kept answering "Yes, Yes, Yes, Yes" The least I can do for Jacob is make sure he is happy. Not saying that is his future at all! I have seen lots of children and adults function with CP. I pray he WILL walk, talk, have the ability to learn and most important go to the bathroom on his own and wipe his own butt! :-D
Last night I do believe I figure out why Ava has been acting like a wild Ape screaming her head off for the last few weeks. She cried and threw stuff mostly at night, refused to eat or drink, and refused medication. She was pulling on her ear one night and holding her head other nights. That poor baby has been cutting all 4 of her 2nd molars at one time.
Andrew is so sweet he follows you with his eyes and has the biggest cutest smile on his face. Both the boys are sleeping a little longer (during the day and morning) They think night time is awake time. They are going 5 hours some times longer between feedings and eating 6oz most of the time. Speaking of that little man he is crying now so I better go pay him some attention.