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. 
6 comments:
Jenn, Mike, Em and Jude,
I know the thoughts that are going through your head about the g-tube. I fought Finnian's for almost a year. I know where Mike is comming from the frustration and helplessness about trying to get some form of food in the child. I used to syringe peidasure into Finnian when he wouldn't eat. He was always congested due to aspiration.At the peds suggestion I took him to a pulmologist he suggest the g-tube then I had to take him to the GI and he suggested the the tube so here I was I had 4 doctors telling me to get a g-tube it would give him a better quality of life and it would save my sanity. I finally gave in and he got his g-tube. Now I know he is getting all of his meds. Because of his g-tube we were able to do the keto diet because he needed the formula verision as he was not taking in enough solid food by mouth. Now when he is sick I can still give him fluids and he doesn't need to get IV fluids. Its scary but worth it in the end.You can just use it for his meds and for for when he doesn't want to eat but keep feeding him by mouth. Go for the consulation and ask all about it.
Ger and the Cats in the Bronx
I know this is one of the last things Jude has that is "normal" and it seems to be slipping away. I understand. With Caleigh, she has never been able to eat due to her intestines, but I do understand.
You will have to look at this positively. Jude's brain needs nutrients to thrive and grow. When he is refusing to eat, he is starving his body of those nutrients. From your posts, I can tell you and Mike struggle with feeding and fluids daily. Just imagine what Jude's body will be able to do if properly hydrated and nourished?
After Caleigh's last surgery she developed compartment syndrome. Her body was retaining fluid, her kidneys stopped working, lungs stopped and her heart was shutting down. Her body, instinctively took all the circulation and blood to her head. Her head was bright red while the rest of her body was blue, then purple, then grey. Her body knew what was important...the brain.
Get the analogy?
I know it's hard, but don't look at this like an end all to feeding. Make sure Jude is in a good feeding program...don't stop feeding by mouth and he could very well out grow this phase.
Good Luck and I hope tomorrow is a better day!
NO one ever understands, not even doctors, until it's their own child. Sometimes these things are so hard to wrap our minds around... a child who won't eat? It just defies logic. I still can't explain it. Still praying for you and for Jude...
what a roller coaster ride. you can vent anytime you want, about anything! i wish there were words to comfort you, just know we all care about your family.
Hi Jenn,
I am so sorry that you have to endure this. It is a very difficult situation to be in.
One of our friends has a daughter with Turner Syndrome. She had a G-button until she was 3. They still fed her at the table with the rest of the family and then tubed the rest of what she needed to eat. Eventually, she was able to take everything by mouth and the G-button has been a thing of the past for over a year now.
Even though it isn't permanent, I'm sure you feel it is a step backwards. I sure hope things will settle and he begins eating again.
My thoughts are with you and Mike during this stressful time.
Love to Jude and Emily!
Parker & Amy Hendrix
PS - When we were at Duke for Parker's second infusion, we met a lovely family from Philadelphia who had a 3 year old daughter that had a stroke in utero. I couldn't tell anything was wrong until they pointed out that she has problems with her right side.
oh Jenn, I'm so sorry you are dealing with this. I will be praying for sweet Jude. Have you tried adding Duocal to his food. May not solve the issue but has helped Grace gain weight.
xoxo
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