Wednesday, February 17, 2010
2 many appointments to remember and a really long blog today. Has results of the boys appts from yesterday.
Yesterday was a big appointment day. Jacob has a GI appointment in Orlando at 9am which I had the pleasure of taking him to with a sick toddler. Jack took Andrew to his audiology appointment at 9:50.
Jacob has to be admitted to Arnold Palmer Hospital for Children on Monday to under go a 24 hour study with a tube down his nose that has some kind of sensor on it that is suppose to measure acid levels to see if he is having sever reflux or not. (The purpose of this is to figure out why Jacob scream all day and arches himself back like he is in pain) Then Tuesday morning he is going to have a swallow evaluation to see if he is aspirating any of his food into his lungs. He struggles when he eats and gags alot. If he is aspirating he will need a G-tube to prevent lung damage and infection. :-( I really hope this is not the case. Just gives me flash backs of Logan. I changed him back to a slow flow nipple and have been thickening his milk with cereal and he is eating much better and on gags toward the end of his feeding when he gets tired and full. They are also concern that some times he takes up to an hour to finish his bottle. Trying to stay positive and pray they don't see aspiration!
Andrew appointment did not give us any real answers just confirmed more of what we already know! He "passes" his test per the instruments like he should, but blatantly does not respond to any of the sounds like he should AT ALL! Babies turn their heads to the direction the sound is coming from and Andrew does not. So he has to go to Arnold Palmer as well to get a more advanced screening done. It is similar to an EEG they put electrodes on his head to see if the signal from the ears are communicating with brain and vice versa. Most hearing loss can be treated in some form, but if it is actual nerve damage I was told there is not a whole lot that can be done. I have not got the appointment time and date for this test yet. Not sure if he will have to stay or not, because they want the test done with sedation.
Jacob had his first physical therapy visit today. He was NOT happy. His arms are very tight and his shoulders. He does not have full range of motion in his left arm already. I have been working on it with exercise, but have not had alot of success. She gave me some good tips today on helping him with the back arching he does to keep his head more midlined so he can start to develop more. Ugh I am so unmotivated and I have to light a fire under my butt to do lots of range of motion and exercise with him every day.
I feel like this crazy storm is never ending. I'm having a woe-is-me kinda week...and I dislike people that think this way! After everything with Logan, now the 2 boys I have home that I thought were for the most part happy and healthy now they are facing G-tube placement, life long disability and prospects of diagnoses of permanent untreatable deafness! I feel bad for my boys and I feel guilty like it is partly my fault. I have guilt that I was sooo worried about saving Logan before they were born, that I did not consider how it would effect them. I know Logan's life was not in vein, but now that he is gone I can't help but feel shame and guilt for risking the boys lives when Logan did not make it anyway. If I could take it all back, I'm sure I would not. I cherish every moment God gave me with Logan and God! I miss him so much. Yesterday when Ava seen the Winnie Palmer building she screamed over and over again in a fit that she wanted to go see Logan. I tried over and over to explain to her that we had no business there no more. That Logan was not there. She asks, "where did he go" I try to tell her he went to Heaven. Then she proceeds to scream "I WANT TO GO SEE LOGAN." and insisted that he was "in there"
I'm probably overreacting, but the prospect of surgery scares me on either child. I got Logan's death certificates in the mail yesterday. Cause of Death: Respiratory failure, Presumed Sepsis, Severe bronchopulmonary dysplasia, pulmonary hypoplasia. This is just what Dr. Brown wrote. Not from the autopsy. I'm not sure if the autopsy report is in or not, or even if they will automatically send me a copy or not. I suppose I should call the social worker at WPH to ask. All the autopsies are done in house at Arnold Palmer, so I would think it would be done. If so I will get a copy of it on Monday.
I went to my job today to give the benefits lady a copy of Logan's death certificate so he could be removed off my insurance etc. I thought I was going to hyperventilate in there. It took everything in me to maintain my composure. I filed for his life insurance, but it is still unknown if they will pay the policy out or not. The lady their told me she has not seen them not pay a policy out that they "pay out for suicides so why would they not pay for a baby born sick" The insurance company told me a different story, that when they got the claim they would send it to underwriting and request a copy of his medical records from the hospital to see if he "fits" in the parameters of his policy.
Not to worry. GOD has already SHOWN that he ALWAYS provides. I still really need to write thank you notes to every generous person that has been there for us, financially, emotionally, and to the friends and family that spent their time with us. I appreciate everyone that has been there for us. I know God is going to provide and make it possible that Logan's headstone will be paid for with it being added to our debt. The guy emailed me back yesterday and said he was taking the stone to Georgia on Thursday to have the picture etched. So, I am guessing it should be ready in about 3 weeks.
Posted by Jennifer G. at 5:20 PM