Tuesday, January 19, 2010

Lots of 1sts

Lets see the other day Friday the 15th (the date is wrong on the picture)he gr abed the toy on his swing for the 1st time. He actually laughs now. He is so sweet. Yesterday Jacob was swatting at his toys on the floor. This is VERY exciting for me that he is showing some interest in anything but crying. He had an EEG done yesterday and decided he was going to cry the entire time..for almost 2 hours he did nothing but climb me like a cat and cry. He did have a brief 4 minutes where he decided to stay still. He actually looked at me did some Jacob cooing and some big mouth open smiles at me. I wish I had a camera.

Jacob had his neurologist appointment today. She read the EEG and said even though he was moving alot she said it was very obvious that he had very abnormal brain waves conducive of potential seizure activity. So...he is starting on phenobarbital tomorrow. He has to have it 2 times a day. So the med list is not syntroid and prevacid in the morning along with the phenobarbital now and a 2nd does at night. Andrew just gets prevacid in the morning. When Logan comes home I am going to feel like a nurse doing med passes in a nursing home. He is coming home on 8 medications I think.

Logan is on 31% and has been for days. He is still on cpap he is doing very well and is pretty much ready to come home. He has been stable with no real issues. He desats when he needs suctioning and that is it. I have been trying to see him every day at the evening shift change so I can do his trach care and give him his bath. On the 22nd I get to change the actual cannula out. So the big story why he can not come home yet...We are literally waiting for him to hit a million dollars on my Cigna policy. As of this morning he was around $900,000 The reason for this is that he is so close to his million dollar life time max with several hundred thousand dollars in pending charges that they can not order his home ventilator or any of his g-tube supplies because of all the pending charges. Once he is at 1 million and they get the denial letter from Cigna saying they are not paying anymore...Medicaid will take over all of his medical expenses. SO they can not even order the stuff until then. I was told it can take up to a month to get the vent once it is ordered (I hope not) etc. Then he has to be stable on the home vent. So over billing complications his 2 weeks he was suppose to be there can now turn into another month or more! He will also get 24hour nursing care when he comes home. He was weened this morning from .4 to .25 on his steroid. Hopefully it will be gone by next week and he won't need an increase need for oxygen. This is all I can think to write for now.

Thought of something else. I fed them baby food for the 1st time tonight. Jacob went first he actually did very very well . He ate prob a little over 2.5oz. of apples spiting very little of it out. Andrew tongued most of what I gave him out...overall a very fun 1st time.

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