Mike took Jude to the follow up with the neurologist today. I have not caught the entire conversation between Mike, and the dr, but I do know he gave us a referral to someone about a g button. The doctor seems to think it won't be a permenant solution, but none the less it's a horrible thing for me to hear. I have been very emotional, and angry since I heard that news, and I am unsure why. The doctor said it's imperative Jude gets his medications, and this will make things easier for him. I try to take everything in stride, but hearing they want to put a feeding device into my child sends me in a tail spin. There is a part of me that has always thought that if someone needs a feeding tube, or button then they have a failure to thrive for a reason. Of course, when it's your child you are staring at with the issue, all your prior thoughts, and soap box rants crumble to ashes.
It's amazing how we focus on individual words with disabled children like "aspirate", and we pray that word won't come up. Then all of a sudden a semi hits you and you are told it has nothing to do with aspirating, and just a sensory issue. Sensory? When did that come into play? Someone changed the rules! Even though the doctor said "sensory" he also said he cannot confirm 100% this is due to the sickness, the medication taste, or what. He did say he thinks a lot of this is behavorial, so is that good that Jude gets angry?? First, off I think all the went WAY to far because Jude wasn't treated properly on Saturday. Second, if feeding issues are going to continue I guess we have no other choice but to get the g tube.
So why am I at the end of my rope today? I guess we all go crazy every now and then, and as long as it doesn't last more than a day, then I figure I get a pass. Having a disabled child is very stressful on a marriage, and your family. Plus, you always hold out a bit of hope that your life will return to normal and will include that child. Then when life slaps you in the face to wake you up, it's disheartening. It's like falling asleep to dream that your child can run, jump, talk, and walk, and when you wake up your child needs a G BUTTON. Shouldn't it be the other way around? Shouldn't you have a nightmare, and wake up to everything being ok? My life seems to be reverse, and there are many moms out there walking this road with me. Be thankful if you have healthy babies, is all I have to say! So I am going to hold out hope (like I always do) that changing Jude to depakote sprinkles vs depakote liquid, and once the pneumonia clears up 100%, then Jude will eat again, and we can avoid this surgery. We are going to have to take him to have him evaluated regardless, so I guess we will see what they say.
Thanks for letting me vent, and throw a pity party. I will be hosting a better part tomorrow I promise. Oh and I had to share my experience with an X RAY tech. The other day she came in to take Jude's lung X Ray, and she popped his bed up saying "He needs to sit up". This all before I could yell he cannot sit up, and his little head flopped forward. Poor girl, I know she felt bad.
Also, Jocalyn just emailed me, and said we might try pediasure. I think I will pick some up tonight! I will try anything right now!
FYI ~ Don't call Mike right now he is in a horrible mood! He wants some peace. I know everyone wants to offer words of comfort to him, but he is a bit of a recluse when he is upset.