So I guess I will post a little update on Jake. He has been going back to his old ways lately. Not tolerating feeds, getting full way too fast, getting super dizzy and passing out...all those fun things. It is a constant battle every single day to make sure that he eats and goes pee. There have been quite a few days lately that he isnt even peeing! But the doctor has reassured me that its only because he is not taking in any fluids. We cant get the required amount of nutrition in to him because he isnt tolerating much of anything. So he has lost sooo much weight! Even after leaving the hospital last month. He is down to 87 lbs. It seems fine...and there are kids who weigh more than him...but he is also 5'4 and 3 months ago he weighed 113 lbs. So seeing all of that weight loss has been really concering on us all.
So we had 2 appts today. Neurology and Pulminology. Neuro was first. I cant even begin to say how much I love his office! I am good friends with his nurse and we talk many times a week on the phone. However, I have never met her. But I saw her talking to someone today and I was so excited to get up and meet her. She asked how Jacob has been and the floodworks came out! She knows that I am very worried about him, and she says the same thing. Its so hard to talk about your child and how they are not doing good. But sometimes holding it in is never a good thing either. So she tells me that I really need to talk to Dr T about the concerns im having and she would help me figure out a good plan. So in to the appt I went. I was a little mad because he was really behind and we still had Pulm to get to. So I only had an hour to talk to him. I know it seems like a lot but our appts are usually 2-3 hours. I guess thats why he was so behind haha. He takes so much time with everyone. I just love how attentive he is. So I start talking about my concerns...all which he agrees with and then he goes to do his assessment on Jacob. And I tell him (like I have in the past) that Jacobs feet are still really tingly and that its starting to get painful now too. So he puts the thing he uses to check reflexes with on his foot. Jacob says he cant feel it. So he does it to the other foot. Again, Jacob says he cant feel it. He goes up his leg and Jacob immediately screams and says its cold! So then he checks his hands...same thing. Jacob could not feel it on either hand but once he put it up his arm...there it was. So Jacob has now been diagnosed with Nuropathy. I had no idea what that was so I told Tom to google it. He did and said that its loss of feeling in hands and feet. Well duh...thats what he has. We were so worried because he has been tripping SO MUCH more, and we have had to use his wheel chair almost everywhere we go because he has a really hard time walking. So its nice to know why. He had some nerve testing done a few months back and it showed there was nerve damage but we never put a diagnosis on it. Now with his new symptoms...he for sure has it. So what is neuropathy? Well the Peripheral nerves carry information to and from the brain. They also carry signals to and from the spinal cord to the rest of the body.
Peripheral neuropathy means these nerves don't work properly. Peripheral neuropathy may be damage to a single nerve. It may be damage to a nerve group. It may also affect nerves in the whole body. Which is what Jacobs does. It effects many nerves in his body. Not just 1.
So on to our pulm appt. I got there and wasnt late...phew! So he read the test results of the sleep study that we did a week ago. It came back "ok" he wasnt thrilled with the results but did say it was better than he expected. So thats good. I guess his body moves 2 times every hour. And he told me that is a neuropathy thing for sure. It doesnt disturb his sleep, so thats good. Then we did a lung function test. His was in the low end of normal, so we are going to keep an eye on that for sure. Then he looked at his throat and nose. And he was fine until he got to his nose. I guess he has major congestion way up and some big fancy word was big and it shouldnt be haha. So he is putting Jacob on flonase and see if that helps. If it doesnt he is going to have to further investigate and see why its too big. He also said that if this med doesnt work we are going to have to look at his vocal cords to see if they are rubbing together. If they are...Jacob can say "I have nodes. I am living with nodes. But I am a survivor, but I have to pull back because I am limited. Because I have nodes." hahahaha...its a pitch perfect quote.
We see the dietitian on Thursday so I will update more when I go to that appt.
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